tag:blogger.com,1999:blog-1708078545149470772024-03-21T23:32:23.362-04:00Healing HopefullyMedical Musing's by MegMeggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.comBlogger171125tag:blogger.com,1999:blog-170807854514947077.post-49285479226554070552016-03-13T11:22:00.002-04:002016-03-13T11:22:41.859-04:00Still Running Marathons<div dir="ltr" style="text-align: left;" trbidi="on">
"<span style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 16px; line-height: 22.8571px;">Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us"</span><br />
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<span style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 16px; line-height: 22.8571px;">Those of you that really know me, know that giving up running was one of the hardest, if not the hardest thing that illness has brought to my life. It was my stress reliever, my thinking space, my mode of transportation sometimes, my inner peace, my exercise, a spiritual awakening, running was life. I did track and field and cross country competitively and did half and full marathons for sport. Every day I ran some insane distance or another. I didn't take valium then. I didn't need to, because I had my running. I usually came in first and second every time I did any sort of competition, it was my passion. That and music, which I can't do anymore either. Both were marathon sports. Lots of practice, lots of training, lots of staying in shape, keeping my 'chops' up, just for one day, one race.</span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">I still remember being in the hospital in September of 2011, right after I had lost my job as a special ed teacher due to my health. It was a 13 day stay. It was the stay I started this blog actually. My potassium was dangerously low. I was in and out of consciousness. I almost died. When I was awake I would cry and my nurses would ask me what was wrong and I would say, "I just want to go for a run, I'm tired of just laying here." They would get this sad look in their eye and try to move me to the chair in the room, but it would be too painful for my muscles because of the low potassium, and I would think the sad look in their eye was them commiserating with me wanting to go for a run and them thinking in their heads, "just a couple more days hunny;" but what their eyes were really saying was "I don't have the heart to tell this girl she will never run again."</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">I never did. I never could. I never will. 'Til I'm in Heaven.</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">But God. </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">God is currently using my training as a runner to get me to a goal that I never would have dreamed possible! He is using my skills of flexibility, hard work, endurance, determination, planning, training, and passion to run a different kind of marathon. One that I'm running pretty much 24/7 but while sitting on my booty on my computer. </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">In just 13 months with the company, Thirty-One Gifts, I met all the qualifications needed to DIQ which means Director in Qualification, so this month (my 14th month--which is rare, but not unheard of and some have done it much faster, but I'm betting they were not terminally ill) I am DIQ'ing. That means I need to have 4 PEQA's (Personally Enrolled Qualified and Active) consultants under me, which I do; sell $1000 personally which I have, and my team needs to sell $4000 or more (and we are halfway there on the 13th, so we are on track (but my peace of mind could still use some mega big orders to come my way!! :) </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Throughout my entire 31 journey, and especially the past couple of weeks, I have not been able to not think of not comparing it to running a marathon. And for me, that makes it easier. </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 1--get that first customer and order that is not your own...because let's face it...the first order is always your own ;)</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 2--have your first party!! YAY!!</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">the miles go on from there...</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 5 or so-- Your first recruit, your building your team, your building your pace!! Way to go!</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 7--Attend national conference!! Here's how it went for me...had one recruit on my team. Got my ribbons. One of those ribbons is a goal ribbon for next national conference and we are told to write a goal for national conference I'm terminally ill with 1 recruit with a rocky business and I write director on my goal ribbon for what I want to have accomplished by next national conference. If you are a marathoner you have to have big goals! </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">more miles, more pace building, more recruits, more customers, more parties!</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 10--Senior Consultant!!!!! YOU ROCK!! And you get a personal phone call from Home Office telling you so!!</span></span></span><br />
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<span style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; line-height: 22.8571px;">more miles, more pace building, more recruits, more customers, more parties!</span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 20 or there about--Qualify for DIQ!!! Yeah you did it!!</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 21-23--DIQ This is a long 2 months so it's a long 2 miles, but you can do it. This is where pacing, endurance, hard work, flexibility, and passion come in handy the most! Keep at it, you will survive.</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 24-25--The next 2 months of your 1st 4 months as director meeting qualifications so you get that $1K bonus!! You can do it!!! </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Mile 26--Walking the stage at National Conference!!! YOU DID IT!! You finished your marathon as planned! Everything went of without a hiccup!! </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">I really hope my miles 21-26 look as good as my miles 1-20 did, stay tuned to find out! I believe they will because God has my back. And if they don't there is always next year, but hopefully, in 27 days you'll start getting mail from me that has this logo on it. :) </span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">Because sometimes God has a different race marked out for us than the one we thought was marked out for us in the beginning. And sometimes, that race is so much more fun and pink! And you even get paid to run it! :)</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="line-height: 22.8571px;">**This is the opinion of myself, an independent senior consultant with Thirty-One, and not the opinion of Thirty-One Gifts itself. This is not intended to sell or recruit.**</span></span></span></div>
Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-61165908283664183012015-12-20T12:33:00.000-05:002015-12-22T09:02:57.703-05:00Mission Accomplished: A Year of Beautiful Redemption<div dir="ltr" style="text-align: left;" trbidi="on">
***Backstory: Since I was asked to share this, I will give a very brief snipet of my life and why the following words are so significant to me. I am 30 years old and terminally ill. I was healthy for the first 15 years of my life, then at 16, my life started to turn upside down. It was a slow progression at first. I was still active in school, sports, band, and worked at least one job all the time. At 24, I started getting worse, then at 27 it was determined that I have Mitochondrial Disease (along with 26 other diagnoses) and it was terminal. My blog is where I write about the hope through healing, and the fact that I'm ok knowing I will not be healed on earth but in Heaven, with my Jesus! When I graduated undergrad I became a middle school severe and profound autism teacher and loved it, but lost that job due to my health. That's when I started getting way sick. Then I decided I wanted to try to go back to school to be a dietitian. I was doing VERY well with that and even had a job lined up (way part time) for when I graduated. I went into my last semester of classes with a 3.75 GPA and was the only student who had never missed a class, even though I was literally dying and they weren't. My last semester of classes I had a professor that believed I couldn't be a dietitian because of my disabilities and so he failed me, I went down to a 3.04 GPA, and got dismissed not only from the dietetics program, but the school all together. So I set out in January this year to seek Beautiful Redemption. This to me looked like getting my degree done, but take a read below and see what happened! I hope you enjoy, sorry it's so long with the backstory and the blog together, but I wanted everyone to understand.**<br />
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It may not seem like it, but yes, I'm still here!<br />
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I haven't written here since the end of May and I am sorry for that, but a lot has been going on!<br />
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There is no way possible for me to catch y'all up on all the nitty and gritty that I have gone through since June to today, but I wanted to write anyway, and try to get the blog up and going again.<br />
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Honestly, I have been sick, really sick. To the point where I don't want to/can't do anything most days (including today). But I didn't want to leave y'all hanging anymore.<br />
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Whenever I have had energy at all, I've used it to work on my Thirty-One business which is really the best thing that could have ever happened to me!<br />
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If you recall, my word for this year was "Beautiful Redemption" and boy have I been redeemed!<br />
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When I started my journey for this year of Beautiful Redemption it was one thing. Now it's something entirely different! </div>
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When I wanted to seek Beautiful Redemption this year it was to get my way back into the dietetics program, take that god forsaken class again, get an A, go to internship, and prove I would be the best damn dietitian there ever was--despite or because of my health situation. </div>
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And let me tell you something. I am Beautifully Redeemed today! Don't go yelling and cheering because it's not the Beautiful Redemption I sought, or thought was the only way out. </div>
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But this Beautiful Redemption is SO MUCH BETTER!!!</div>
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While I was trying to stay afloat at school something happened. And it turned out to be something pretty big! In January, I became a Thirty-One Independent Consultant. I swore up and down to the person I signed up under that I would never have a party. I was in it for the kit and to to get paid supporting my habit. </div>
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Well, let me tell you, that didn't happen. I started Jan. 9, 2015. To this day I have sold over $10,000 in products, I'm on par to sell $11,000 by the end of the year. I have over 100 customers. I've had 28 parties that qualified (more that didn't). I have had a total of 6 people under me, right now I have 4. 2 of them are qualified. 1 is less than $400 away from being qualified. I made Senior Consultant in September, just 8 months after I signed up. I am 2 qualified consultants away from being director.I have earned every incentive there is to earn. I run a Facebook group for other Thirty-One Consultants that has over 4,000 members. Home office knows my name. And my story.</div>
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If that is not Beautiful Redemption, I don't know what is. </div>
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It's not what I was looking for, but it happened. </div>
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I'm pretty sure it happened when I made the trip to Columbus for the Thirty-One National Conference that took hard work of many people to get me there. But let me tell you, that was the best 3 days of my life! I knew exactly where God wanted me, and it was with Thirty-One! The BEST direct selling company on the land! He helped me get there, so I could be Beautifully Redeemed. And He succeeded!</div>
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I run my own business with over 20 chronic/congenital/progressive/terminal illnesses and I am damn good at it. In fact, when I'm sickest is when my business seems to soar. And no, I don't use sympathy for sales. </div>
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In January, I was dead. No I am alive! So Alive! </div>
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I didn't go back to school, even though I could have. And I don't care. </div>
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I don't spend all my days in health related boards focusing on the fact that I'm sick! </div>
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I spend my days building relationships with my customers. I spend my days making graphics and Facebook scripts to help fellow Thirty-One Sisters. I spend my days living. Because now, I have a reason too. </div>
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Sure my living looks much different than most peoples living. But it is still living for me. </div>
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I don't want to get into where my health is at this point, because it's bad, and that is not what this blog is about.</div>
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I just wanted to tell you all that I miss writing so much. I miss my readers so much! </div>
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But I don't miss not living. </div>
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And I love knowing that even though it's not how I thought it would look, but that I, in fact, have become Beautifully Redeemed!</div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com3tag:blogger.com,1999:blog-170807854514947077.post-20164869779727326402015-05-31T12:28:00.003-04:002015-05-31T12:29:01.548-04:00Chronic Illness by the Numbers<div dir="ltr" style="text-align: left;" trbidi="on">
Chronic/progressive/terminal illness is incredibly hard to understand if you're not the one living it out day after day. Heck, it's hard to understand even if you are the one that is living it out everyday.<br />
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It is so hard to explain to people the process. The ins. The outs. The ups. The downs. The bureaucracy. The advocacy. The pain. The healing. The sorrow. The joy. No one gets it. Not even me.<br />
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We try to use the amazingly composed by Christine Miserandino <a href="http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">"Spoon Theory"</a> wherein each activity incredibly small or large is compared to costing one spoon and depending on how our disease is acting that day we are only slotted a certain number of spoons. Once we are out of spoons we cannot do anything else that day. This is by far the best illustration in which we (those of us with chronic illnesses) can explain to those without chronic illnesses what it is sort of like to live daily life 24/7 with out enough spoons to get through our days and accomplish our goals and dreams and plans for our lives. This is why we call ourselves spoonies, if you've seen that term thrown around here and there. This is also why I <i style="font-weight: bold;">always</i> have a spoon bracelet and spoon ring on, so I always have extra spoons on me to help me get by and keep on going on low spoon days. They are a visual reminder that I am a chronic illness fighter and warrior and I can achieve my dreams, I use the visual reminder of extra spoons to help keep me driven and passionate.<br />
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But I digress...<br />
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So since beyond the Spoon Theory it is incredibly difficult to understand the daily life and living life with a chronic/progressive/terminal illness, I thought that it might be helpful to help those without chronic illnesses understand us better if they were introduced to chronic illness by the numbers.<br />
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I got this idea from a friends Facebook status she posted several weeks ago. When I read her (much shorter, but very emphatic) list I thought in my head 'man, that sure does put it out there for you doesn't it' and thought it was very effective. So I made a more extensive list, and it pertains to me and not her of course. I'm sure I could come up with some more numbers associated with chronic illness but this list is definitely pretty detailed and puts it out there for you. Honestly, while I was looking back through bills and records to make sure there was nothing in here exaggerated at all (in fact I went with months with the lowest costs because I don't always have a high cost month and don't want to) I was <b>blown away </b>myself. Who knew there were so many resources being poured in to little 'ole me. I have <b>always </b>said how grateful I am to have insurance and disability and now I am even more so when I see what I could be having to deal with. So thank you insurance. I know I wish you paid for my TPN, but I think you maxed out on me for other things.<br />
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So sit back, relax, and read some statistics of my life of living with chronic/progressive/terminal illnesses and see if you are blown away with how chronic illness affects my life...by the numbers.<br />
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<ul style="text-align: left;">
<li><b>Diagnoses: </b>23</li>
<ul>
<li>Mitral Valve Prolapse, Atrial Septial Defect, Heart Murmur, endometriosis, PCOS, Celiac Disease, Ulcerative Colitis, Dysautonomia (OH, NCS, POTS, and PAF), Ehlers-Danlos Syndrome-Hypermobility Type, Fibromyalgia, Feeding Dysfunction, Gastroparesis, Unspecified Neuromuscular Disorder, Colonic Inertia, Intestinal Dysmotility, Erosive Esophagitis, GERD, Migraines, Autonomic Neuropathy, Asperger's Syndrome, Anxiety/Medical PTSD, Anemia of Chronic Disease, and Mitochondrial Disease (complex I, III, and IV)</li>
</ul>
<li><b>The amount of time it takes me to get ready if I want to leave the house:</b> Between 1 and 1,5 hours.</li>
<ul>
<li> It takes a long time to unhook from my TPN and/or my tube feeding, put hydroseal over my PICC line, get in the shower, get clean with the water at just the right temperature so it's not too cold or hot to trigger me passing out, getting out and getting dressed, doing my hair without passing out, cleaning my tube site, fixing my PICC line site up, hooking back up to my tube feed and/or my TPN, administering any meds I may have to take, getting all the emergency supplies together I may need while I'm out and packing the meds I may need while I'm out up.</li>
</ul>
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<ul style="text-align: left;">
<li><b>The number of doctors I have: </b>22</li>
<ul>
<li>PCP, GYN, 2 Neurologists, Neurosurgeon, General Surgeon, Anesthesiologist, Interventional Radiologist, 2 GI's, Pulmonologist, Rheumatologist, Cardiologist, 2 ENTs, Psychologist, Opthamologist, Wound Care doctor, Dermatologist, Allergist, Pain Management Physician, and a Biochemical Geneticist/Metabolic Specialist, </li>
</ul>
<li><b>The number of 'support staff' health professionals I have:</b> 14</li>
<ul>
<li>2 home health nurses, OT (occupational therapist), PT (physical therapist), counselor, 4 different RD's (registered dietitians), 2 pharmacists (1 for TPN--total parenteral nutrition-- and 1 for compounded medications), a DME (durable medical equipment) provider for my wheelchair needs and any other medical equipment I may need, a case manager, and a social worker. </li>
</ul>
<li><b>Number of doctor's appointments I have had so far this year: </b>16</li>
<li><b>Time spent driving to and from Indianapolis to get to doctor's appointments: </b>32 hours</li>
<li><b>Number of procedures, tests, and surgeries I've had so far this year: </b>5</li>
<ul>
<li>J-tube changed, colonoscopy, MRI, CT scan, sinus/tonsil/adenoid surgery</li>
</ul>
<li><b>Number of OT/PT/counseling appointments I've had so far this year: </b>38</li>
<li><span style="background-color: white;"><b>Cost of medical care/appointments per month: </b>$12,536</span></li>
<li><span style="background-color: white;"><b>Cost of medical care/appointments per year:</b> $150,432</span></li>
<li><b>The number of times I have been admitted to the hospital for more than 48 hours: </b>19</li>
<li><b>The number of times I have been admitted to the hospital this year and the number of days:</b> I have been admitted to the hospital 2 times so far this year for a total of 9 days.</li>
<li><b>The number of years I have either been admitted or had a doctor's appointment on my birthday: </b>7</li>
<li><span style="background-color: white;"><b>The number of procedures I have had done: </b>around 100</span></li>
<ul>
<li><span style="background-color: white;">8 colonoscopies, 5 EGD's, 2 barium swallows, 1 small intestine biopsy, 1 stomach muscle biopsy, 1 thigh muscle biopsy, 3 skin biopsies, 2 NJ tube placements, 6 J tube changes, 4 EMG's and Nerve Conduction studies, 3 EEG's, around 30 or so EKG's (they are never ending and often), around 10 echocardiograms, 8 MRI's, and 16 CT scans.</span></li>
</ul>
<li><span style="background-color: white;"><b>The number of surgeries I have had:</b> 4</span></li>
<ul>
<li><span style="background-color: white;">1 ovarian cyst removal, 1 ovarian cyst removal and endometrial ablation, placement of J tube and port, and tonsilectomy/adenoidectomy/functional endoscopic sinus surgery</span></li>
</ul>
<li><b>The number of implantable devices I have in my body:</b> 3</li>
<ul>
<li>Port in my right chest, PICC line in my right arm. Both of these have catheters that go through my veins towards my heart and sit right next to my heart and release what is pushed through them. That is why it is imperative sterile procedures are used to minimize risk of infection to prevent the blood going straight into the heart from getting infected. </li>
<li>J tube. A feeding tube in my Jejunum that bypasses my stomach because ny stomach only has 4% nerve and muscle functioning so when I eat food doesn't pass through like it is supposed to, so we avoid my stomach all together. </li>
</ul>
<li><b>The number of scars I have from surgery: </b>11</li>
</ul>
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<ul style="text-align: left;">
<li><b>The number of medications I take: </b>26</li>
<li><b>Number of medication doses per day: </b>53 doses per day + 1 patch that is changed weekly, 1 biologic infusion that is done every 5 weeks, and 1 injection that is done every 3 months.</li>
<li><b>Amount of time spent administering/preparing medications per day: </b>at least 3 hours, if it is Sunday (the day I switch all my syringes and supplies out because I use them for one week) it takes around 4.5 hours.</li>
<li><b>Cost of medications per month: </b>$3,726.25</li>
<li><b>Cost of medications per year: </b>$44,715</li>
<li><b>Cost of OTC medications (self purchased) per month: </b>$319</li>
<ul>
<li>I often have to do without some of these because I can't afford to pay this much per month on disability and that isn't that good because most of these OTC meds are part of my 'mito cocktail' the only treatment there is for my mitochondrial disease.</li>
</ul>
<li><b style="font-weight: bold;">Cost of OTC medications (self purchased) per year: </b>$3,828</li>
<li><b>Cost of miscellaneous medical supplies (self purchased) per month: </b>$46</li>
<li><b style="font-weight: bold;">Cost of miscellaneous medical supplies (self purchased) per year: </b>$552</li>
<ul>
<li>This includes syringes for my medications for tube feeding and things like gauze and coban and other dressing type things as well. There are other miscellaneous expenditures randomly but these things are purchased monthly for sure.</li>
</ul>
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<ul style="text-align: left;">
<li><b>Number of Remicade infusions received so far this year: </b>1. but should be 5 if I was allowed to get them because I didn't have a recurrent sinus infection that was messing with my immune system and I was not allowed to receive my Remicade. Hopefully I can again in about 3 more weeks.</li>
<li><span style="background-color: white;"><b>Number of Remicade infusions needed per year: </b>10</span></li>
<li><span style="background-color: white;"><b>Price of Remicade infusions: </b>$6,421</span></li>
<li><span style="background-color: white;"><b>Price of Remicade infusions per year: </b>$64,210</span></li>
<li><b>Number of Normal Saline infusions received per year: </b>104</li>
<li><b>Number of Normal Saline infusions received so far this year:</b> 43</li>
<li><b>Liters of Normal Saline received per week:</b> 4</li>
<li><b>Liters of Normal Saline received per month: </b>16</li>
<li><b>Liters of Normal Saline received per year: </b>208</li>
<li><span style="background-color: white;"><b>Price of Normal Saline infusions: </b>$209</span></li>
<li><span style="background-color: white;"><b>Price of Normal Saline infusions per year: </b>$21,736</span></li>
</ul>
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<ul style="text-align: left;">
<li><b>Daily volume of tube feeding formula consumed: </b>1250 mL or 1.25 Liters</li>
<li><b>Yearly volume of tube feeding formula consumed:</b> 456,250 mL or 456.25 Liters</li>
<li><b>Daily amount of sterile water and Gatorade for hydration: </b>1250 mL or 1.25 Liters</li>
<ul>
<li>1 cap full of powdered Gatorade is mixed with 1250 mL of sterile water to produce the solution that I use to flush my feeding tube with every day for hydration purposes,</li>
</ul>
<li><b style="background-color: white;">Cost of tube feeding per month: </b><span style="background-color: white;">$1,403</span></li>
<li><b style="background-color: white;">Cost of tube feeding per year: </b><span style="background-color: white;">$16,836</span></li>
<li><b>Daily volume of TPN: </b>1560 mL or 1.56 Liters</li>
<li><b>Yearly volume of TPN: </b>569,400 mL or 569.4 Liters</li>
<li><b>Monthly cost of TPN: </b>$1,500</li>
<ul>
<li>Currently paying for this out of pocket. Hopefully me paying out of pocket is temporary or me being on TPN is temporary. This alone exceeds my annual income by around $6,500.</li>
</ul>
<li><b>Yearly cost of TPN: </b>$18,000</li>
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<ul style="text-align: left;">
<li><b>Total estimated annual cost of my medical care: </b>$302,891</li>
<ul>
<li>Medical care appointments per year: $150, 432</li>
<li>Medications per year: $44,715</li>
<li>OTC medications purchased per year: $3,828</li>
<li>Miscellaneous medical supplies purchased per year: $552</li>
<li>Annual cost of Remicade: $64,210</li>
<li>Annual cost of Normal Saline Infusions: $21,736</li>
<li>Averaged price of tube feeding/TPN (on one or the other, not both) annually: $17,418</li>
</ul>
<li><b>Surviving all this on a daily basis:</b> ****<i>PRICELESS****</i></li>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-59045186832918369952015-05-30T19:22:00.001-04:002015-05-30T19:22:07.066-04:00Five Minute Friday: Blue<div dir="ltr" style="text-align: left;" trbidi="on">
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If you are friends with me on Facebook and/or Instagram you know that I LOVE to take pictures of the sky! There is just something about the beauty of a natural blue sky that gets me every time. It is so, so wonderful, calming, relaxing, and makes me feel closer to God for some reason. </div>
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I love to think of blue as the color of the perfect sky on a nice day. Not of some melancholy feeling or mood like some people may think of it. Honestly, when I first saw the word blue, I immediately went to I should find some good quotes with pictures about some kind of blue emotional raw feeling of deep hurt and darkness blue quotes. But then I realized and remembered that I am too happy for that today! I have had an excellent day. I have helped women feel they are beautiful today and yesterday. I have had 2 major incredible blessings happen to me. I have seen beauty happen all around me. I have seen the beauty in myself.<br />
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I feel like I live my life like a happy little bluebird. I constantly am trying to figure out how I can fly further, make a more impossible dream come true, how to get past the rainbow to that pot of gold. I am so passionate and driven and want to live whatever life I have left with passion, perseverance, hope, joy, and beautiful redemption of course. I always want to do the things that people tell me I can't do. I want to meet every goal. Make every incentive level. Succeed at everything. I know I can fly beyond the rainbow. Because I am a chronic illness bad ass. I'm stronger than a happy little bluebird and they can fly beyond the rainbow. So why can't I? I know I can. I know I can get to the other side of the rainbow and achieve every dream that I have in mind for my life. Despite every circumstance standing in my way.</div>
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I never get tired of sitting on the porch, watching my dog play in the courtyard, working on stuff for 31 or school, or just chilling and watching some TV on my computer, blogging, or whatever, and taking a moment every once in a while and just looking up at the beautiful, vast, blue sky above me. When I see the sky, I get a peace about me. And I know it's all going to be ok. So, you see, to me blue isn't about sadness and despair. Blue is about happiness, peace, joy. Because I associate blue with the sky and how gorgeous it is and how I know how amazing it is and was created by God and how His works are purposeful and perfect. And when I'm staring at the big, beautiful, blue sky that He created that day I also get caught up in the beauty of the sun and that reminds me of God's Son, Jesus, and how He sacrificed His life for <b>me</b> and suddenly, no matter how bad I feel that day, everything feels better. I know God is shining down on me from that beautiful blue sky and protecting me through His Son's sacrifice and holding me close and keeping me safe in the palm of His hands. </div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com1tag:blogger.com,1999:blog-170807854514947077.post-307225103354747412015-05-24T18:41:00.001-04:002015-05-24T18:41:13.603-04:00The ULTIMATE Hospital Packing List <div dir="ltr" style="text-align: left;" trbidi="on">
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So I go to the hospital a lot. There is no surprise there. And I'm pretty good at packing for it. I really never <i>want</i> for anything while I'm at the hospital...besides to go home. So I commonly get asked for my packing list. So instead of just emailing it over and over again, I decided to make it into a blog complete with pictures and explanations. Enjoy and please share or feel free to add comments and suggestions if you would like.<br />
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<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>Documents</b></span></div>
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<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->ID<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Insurance Card<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Medical Binder—I highly recommend the <a href="http://www.cominghomeguide.com/CHourproducts.html">ComingHome Medical Binder</a>—I got one at a Mitochondrial Disease Symposium I attended.
You can purchase the downloaded version of all the forms and put your own
binder together for $10 from this website and make your life a whole lot easier
during hospital stays.</span></div>
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<ul style="text-align: left;">
<li><span style="font-family: inherit; font-size: 7pt; font-stretch: normal; text-indent: -0.25in;"> </span><span style="font-family: inherit; text-indent: -0.25in;">If you don’t have a medical binder make sure you
have a detailed medication list, medication schedule, diagnosis list, list of
all specialists, past procedures, any special dietary needs, nutrition plan,
feeding schedule, a list of allergies, emergency plan, any protocols
(anesthesia, surgery, etc.), </span><span style="font-family: inherit; text-indent: -0.25in;"> </span><span style="font-family: inherit; text-indent: -0.25in;">medical
equipment you use, and anything else that applies to you.</span></li>
</ul>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ33VPEZ1L7NMnjZcg86yL48C4FNQUjNcVBkxLD4KkRcPCMqp0z0z74THRU66aFtM_sjqj_mOT8xx-6_VxIGKKG-IuvtRhUn2-SvNkHRqcDq9EjIa7H_m0eiihn3BSOu8zeJEwoYMxGw/s1600/IMG_1183.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ33VPEZ1L7NMnjZcg86yL48C4FNQUjNcVBkxLD4KkRcPCMqp0z0z74THRU66aFtM_sjqj_mOT8xx-6_VxIGKKG-IuvtRhUn2-SvNkHRqcDq9EjIa7H_m0eiihn3BSOu8zeJEwoYMxGw/s320/IMG_1183.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The <a href="http://www.cominghomeguide.com/CHourproducts.html">Coming Home Medical Binder</a></td></tr>
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</span><!--[endif]--><b>Oversized
Travel Bag</b>—Something big enough to pack all your belongings<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigGeUVUfayB11xj6Z4NwxKzKyJ4W_JgUKdDLrkuyQeg_N43oNk6EblV8Vj9fTAReW00dVFOVvFaao8Tz4bM02ADu6u1JKl8oUKa4ILbbHH-lpJTYsueFOxa-rneiOxoGEEvB7PpW3zKQ/s1600/IMG_1161.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigGeUVUfayB11xj6Z4NwxKzKyJ4W_JgUKdDLrkuyQeg_N43oNk6EblV8Vj9fTAReW00dVFOVvFaao8Tz4bM02ADu6u1JKl8oUKa4ILbbHH-lpJTYsueFOxa-rneiOxoGEEvB7PpW3zKQ/s320/IMG_1161.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://www.mythirtyone.com/629909/shop/Catalog/ItemDetail/3780?refCategory=S109&isSummary=False">Thirty One Retro Metro Weekender</a></td></tr>
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</span><!--[endif]--><b>What to
Wear</b><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Flip Flops/Slippers/Slipper Socks—Something you
can wear when you are out of bed (walking around the room, mandatory hallway
walking after surgery, going to the bathroom)<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1qyEePNAvKsc7rhdyeDhYJ1-4aNJWIOPvxm_0HXoUXf2K8n3o8dS-Z6jg75NA5lbiZqD4nXtuI4bVtGIQ2ANa1QX1T26OM8L8j5Iy2znz_ZPUjXVWJTBkJmta5JvLWq3fKe_KrpF2A/s1600/IMG_1162.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1qyEePNAvKsc7rhdyeDhYJ1-4aNJWIOPvxm_0HXoUXf2K8n3o8dS-Z6jg75NA5lbiZqD4nXtuI4bVtGIQ2ANa1QX1T26OM8L8j5Iy2znz_ZPUjXVWJTBkJmta5JvLWq3fKe_KrpF2A/s320/IMG_1162.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Slippers and Slipper Socks</td></tr>
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</span><!--[endif]-->A button down or full zipper comfy jacket-- you
can put it on even though there are IVs attached to you and all that. Mine is a
really thin cotton fleece Under Armour zipper down and it’s slightly large so
all the lines fit in it and it’s still comfy and cuddly.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihuInViVCr18bynm8jodkPfxP4kUs5gd5UWZHIqiKJ-cf1EhtD4kT9_qLhw8AuDgrjmajnMVRI_hHUfzy4Js1yB8m6lU6jsGpq_eUMKoz7ZYFUUtr8dV7YZX-IfYbZmTuhPKkB_3YxXw/s1600/IMG_1163.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihuInViVCr18bynm8jodkPfxP4kUs5gd5UWZHIqiKJ-cf1EhtD4kT9_qLhw8AuDgrjmajnMVRI_hHUfzy4Js1yB8m6lU6jsGpq_eUMKoz7ZYFUUtr8dV7YZX-IfYbZmTuhPKkB_3YxXw/s320/IMG_1163.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Jacket that zips up so I can slide it on and off over IV's </td></tr>
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</span><!--[endif]-->Fuzzy & Soft socks—I love having fuzzy soft
socks on in the hospital while I’m in bed. Just makes me feel more comfortable
and cozy. Make sure you have enough socks of some kind for at least every
anticipated night of admission.<o:p></o:p></span></div>
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</span><!--[endif]-->2 Long Sleeve Shirts, 1 Short Sleeve Shirt + 2
for each expected day you are to be admitted (i.e. being admitted 3 days pack 5
short sleeve shirts) this allows for extra admission days or accidents, just in
case<o:p></o:p></span></div>
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</span><!--[endif]-->3 pairs of shorts, 2 pairs of pants or capris
(for 3+ nights; 2 pairs and 1 pair respectively for 1-2 nights)—I usually wear
shorts most of the time because I use my heated blanket but sometimes I do like
to wear pants and get a little chilly sometimes, plus it allows more options
for if there are accidents. You don’t need shorts/pants for every day because
they are usually neutral in colors and can be re-worn, the hospital is not
exactly the place for a fashion statement…haha. Why do I bring my own clothes
y’all may be thinking? Because I HATE hospital gowns! I only wear them for
procedures and change back immediately.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->2-3 pairs of underwear for each anticipated
night of admission—this allows for accidents and extra days. You never want to
be without clean underwear at the hospital because you never want to wear the
elastic fake underwear they have at the hospital. Trust me.<o:p></o:p></span></div>
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<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAWT_GMpX4yr7vDAGcHYKf3EHMUS9EJO7RTu7JZO_iIypX-u96VueVtMtvHZDPChn2eaeI_4ij6DrtVFQdpcpYlY0LqGcMuwzcy6VGGpt_B8vqW5N59LJWeC-iI87O_tp2FPYZdzRdDg/s1600/IMG_1164.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAWT_GMpX4yr7vDAGcHYKf3EHMUS9EJO7RTu7JZO_iIypX-u96VueVtMtvHZDPChn2eaeI_4ij6DrtVFQdpcpYlY0LqGcMuwzcy6VGGpt_B8vqW5N59LJWeC-iI87O_tp2FPYZdzRdDg/s320/IMG_1164.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All my clothes ready to go</td></tr>
</tbody></table>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<br /></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>Essentials</b><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Dry shampoo, hair ties, brush, comb, bobby pins,
etc.—for me the most annoying thing is not being able to wash and do my hair
properly every day because of lines. Sometimes you will get lucky and you will
have a nurse that will wash and braid your hair for you if you ask, those are
the best!!! J<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Chapstick—the hospital air is dry. Chapstick is
a must; your lips will dry out fast especially during NPO periods.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Lotion—again the hospital air is dry. Lotion is
a must to make sure your skin doesn’t dry out and feels comfortable during your
stay.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Body wash/soap—so you can clean yourself up with
products you’re used to, those hospital toiletries just don’t cut it.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Peppermint oil—relieves nausea and headaches,
very helpful to help combat symptoms in between med administration times.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Toothbrush and toothpaste—obviously you will
need to brush your teeth. Purchase a cheap toothbrush before you go in and use
it there and toss before you go home so you don’t bring those hospital germs
home in your toothbrush.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Baby wipes—great for cleaning up when you don’t
feel like washing up or to clean up messes if you spill sticky things (like
meds or a drink) or get something else on you. Baby wipes come in handy in a
lot of ways in the hospital. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Hand Sanitizer—hospitals are germy places. Make
sure you have this by your side at all times.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Tissues- The hospital will have some in your
room, but the texture is awful. I MUCH prefer to bring my own, especially the
ones with aloe in them because they feel so soft on my skin. They come in
little travel packs so you don’t have to bring a whole box.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Deodorant—you still want to feel fresh and clean
when you’re in the hospital<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Glasses/Contacts/Contact Lens Solution—Make sure
you have this type of stuff with you because you will have to take your
contacts in and out for procedures.</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi53-ytXw4gKC9vidPYnYgieaEkmeuwrKmhn7p8vroAAaf58154A1f7lNMbi2C0_SWKRm_NCCd-dlMxauUYIFmaKi44vAv4EoiFJIQZUiTDXYenuAhSnoHyiSLBdKGNwM9z5PjSpFO6-g/s1600/IMG_1186.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi53-ytXw4gKC9vidPYnYgieaEkmeuwrKmhn7p8vroAAaf58154A1f7lNMbi2C0_SWKRm_NCCd-dlMxauUYIFmaKi44vAv4EoiFJIQZUiTDXYenuAhSnoHyiSLBdKGNwM9z5PjSpFO6-g/s320/IMG_1186.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All of the Essential Items ready to go in a <a href="https://www.mythirtyone.com/629909/shop/Catalog/ItemDetail/4815">Thirty One Handle It Cosmetic Bag</a></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBav_lUT4Di67kDidbtp_qw-IrT9bYFgkCOpTubG9a9wlxsfZEGIEeDQBniKN7pgqJmEL1LddEZik-GcX8EP7V-rpFdKESQHkJOtIna_QPeQNarh6JQfyOZ_wAJbnpHkJtoEmu_-o5DQ/s1600/IMG_1166.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBav_lUT4Di67kDidbtp_qw-IrT9bYFgkCOpTubG9a9wlxsfZEGIEeDQBniKN7pgqJmEL1LddEZik-GcX8EP7V-rpFdKESQHkJOtIna_QPeQNarh6JQfyOZ_wAJbnpHkJtoEmu_-o5DQ/s320/IMG_1166.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All of the Essential Items laid out for display<br /></td></tr>
</tbody></table>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: inherit;"></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>Medical
Needs</b><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Any medical devices or supplies that you need
for your care that would not be necessarily supplied by the hospital—example: I
bring with me some slip tip syringes for administering my medications because
the hospital usually only has luer lock ones and those don’t connect with my
feeding tube, a 60 cc syringe because the hospital ones are cheap for my
flushes, a towel for putting over my lap for when I’m doing my meds, Vaseline
for helping with my bumper of my tube if it slides up or down, tubie pads, the
steroid cream for my eczema, pain relieving cream called Traumeel (similar to
IcyHot or Biofreeze but homeopathic), tiger balm cream and patches, gauze for
my tube site, splints and braces in case I have dislocations, and stuff like that.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKaQqj61IouMb33utLZI24q0y1VQ17XJKVDw4KE_ys5mAJIk1Qc5f2gPLv3ieIAb-wBKu92AwkecbT0eNr7pTbGcj6Cb4CeZyEpP2U3XZjk-jISv4oZ7H6QCINTmmV9BWavHs1hfyigg/s1600/IMG_1169.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKaQqj61IouMb33utLZI24q0y1VQ17XJKVDw4KE_ys5mAJIk1Qc5f2gPLv3ieIAb-wBKu92AwkecbT0eNr7pTbGcj6Cb4CeZyEpP2U3XZjk-jISv4oZ7H6QCINTmmV9BWavHs1hfyigg/s320/IMG_1169.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All of my necessary medical items laid out for display</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzsqwc1LaXGu3haetPWhIZdEKTBHhC22mTUxO8Tq7QMFvC7NEjJb2sd-wIUkeSRsaG_g4PfMOjpqujnwgaTbANcij7vcmqx5hTiRNJRp75SFDW6N3iNhlB0YXvun1X2n6qgdKE8_NDjA/s1600/IMG_1188.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzsqwc1LaXGu3haetPWhIZdEKTBHhC22mTUxO8Tq7QMFvC7NEjJb2sd-wIUkeSRsaG_g4PfMOjpqujnwgaTbANcij7vcmqx5hTiRNJRp75SFDW6N3iNhlB0YXvun1X2n6qgdKE8_NDjA/s320/IMG_1188.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All of the Medical Items neatly packed up, ready to go in another <a href="https://www.mythirtyone.com/629909/shop/Catalog/ItemDetail/4815">Thirty One Handle It Cosmetic Bag</a></td></tr>
</tbody></table>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>Comforts
from Home</b><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Pillow—I love to bring my own therapeutic
pillow, those hospital pillows suck and they never give you enough and they
aren’t supportive. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Ear Plugs—the hospital is a loud place;
especially at night, right after you just had surgery, you’re in pain, and you
just want to sleep off the anesthesia hangover and through the pain,<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Blankets—I am a blanket snob. I always bring my
heated blanket and another blanket to put on top of it so the heated blanket
doesn’t get anything spilled on it since it’s harder to wash<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Favorite stuffed animal comfort item—I love
having something with me to cuddle with in the bed when I don’t feel good.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->A book or two—if you like to read…<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Nail Polish, Make- Up, Lip Gloss, etc.—if you
are feeling up to it, you may want tto pamper yourself a little bit, it brings
up the morale.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghAVrWtBPh8Ak6A6WTNKpptqVc9O4anHaefYfX_DCr2G2c4inTqj-KvDm_hOiPmcDpX1lQf8bzYnVimHxKjhyF-kCCLAV4JZ1Bx1LIjoVDkrOlAL8oQvTHeC-pygXGuUhhuTE1ezbatQ/s1600/IMG_1177.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghAVrWtBPh8Ak6A6WTNKpptqVc9O4anHaefYfX_DCr2G2c4inTqj-KvDm_hOiPmcDpX1lQf8bzYnVimHxKjhyF-kCCLAV4JZ1Bx1LIjoVDkrOlAL8oQvTHeC-pygXGuUhhuTE1ezbatQ/s320/IMG_1177.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All of my comforts from home packed up in a <a href="https://www.mythirtyone.com/629909/shop/Catalog/ItemDetail/4446">Thirty One Essential Storage Tote</a></td></tr>
</tbody></table>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>Nourishment</b><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Beverages of your choice (water, soda, herbal
teas, hot chocolate)—you can order stuff from the nurses and the cafeteria, but
they don’t always have what you want, when you want it. I always bring my own
stuff. I use the top drawer of the dresser every time as my ‘contraband’ drawer
which includes my next item of…<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Snacks of your choice—again you can get hospital
stuff. But it’s at specific times and sometimes the food isn’t always that
great. I love having a couple of snacks with me that I know I want and keep
them in my ‘contraband’ drawer. I keep applesauce, hard candies, pudding, and
things like that since I can only have soft foods (for pleasure, not supposed
to eat at all but the hospital stresses me out), but you can bring whatever you
want.. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Mints/Gum/Hard Candy/Chocolate—makes your breath
stay fresh for unexpected guests and helps you have something to chew or suck
on that’s yummy, but safe and allowed in almost any admission. Also bring a
little bowl. Put the candy in the bowl and leave it out on one of your tables
so the nurses and other staff can grab some too, nothing is better than
buttering up the people taking care of you. You get much better treatment. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeu69m6hV82R_4ejrC0qVqFHbHl7VOaqhRm94Mz-tuh-kW3ydKdWwnOhkfJi1qs8uFzYGrdnBbsaoj_oIzWvnYL-jbB7lbWnterLbJub8rGYgK3LiEykC5MsPjuFJTczddehtsLHLQrA/s1600/IMG_1179.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeu69m6hV82R_4ejrC0qVqFHbHl7VOaqhRm94Mz-tuh-kW3ydKdWwnOhkfJi1qs8uFzYGrdnBbsaoj_oIzWvnYL-jbB7lbWnterLbJub8rGYgK3LiEykC5MsPjuFJTczddehtsLHLQrA/s320/IMG_1179.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here is a look at the 'contraband' I'm bringing this time around.</td></tr>
</tbody></table>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>Electronics</b><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Phone and phone charger—obviously you don’t want
to go the whole time without your phone. That would majorly stink. I strongly
recommend purchasing a 10’ charger for your phone (can be found cheap on Amazon)
as the plugs are often not near your bed and you won’t be able to reach your
phone if it’s charging.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Tablet—can be used for watching Hulu and
Netflix, playing games, and staying connected on social networks. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Laptop—if you have to do things with more
productivity and more power, or if you are a blogger like me. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Power strip—make sure you have enough plugs for
all the electronics you bring<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq4pOuMvZNe9dxq-_Bs7BqzFrdLTbFUNmTN6vg1WykXUyaWBFx8w6G0778zGQ57XaPOmVdVx49JnMqKZaOBNE8so4D1s2o50DIIBdKA0_ZfWGO8NF7fVUHqDMW-dXZBkKcYFMy4G1hKQ/s1600/IMG_1182.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq4pOuMvZNe9dxq-_Bs7BqzFrdLTbFUNmTN6vg1WykXUyaWBFx8w6G0778zGQ57XaPOmVdVx49JnMqKZaOBNE8so4D1s2o50DIIBdKA0_ZfWGO8NF7fVUHqDMW-dXZBkKcYFMy4G1hKQ/s320/IMG_1182.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You can see most of my electronics, personal items like wallet and keys and such, my medical binder, and my productivity stuff is in this bag that is coming with me. It's my work bag anyway. My office on the go. The <a href="https://www.mythirtyone.com/629909/shop/Catalog/ItemDetail/8000">Thirty One Fashion Editor</a>.</td></tr>
</tbody></table>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>Miscellaneous</b><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Cash—for trips to the vending machine, coffee
shop, etc. Cash comes in handy but make sure it’s in a safe place <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Notebook and Pen—Useful to take notes of what
all the doctors say and to know what is happening with your treatment plan.
Also useful to keep track of your stay and journal to remember and update your
friends and family since you may not be as lucid at all times from medication.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Thank you cards—I write thank you cards to every
nurse I have while I’m admitted and give them to the charge nurse when I am
discharged to pass out when I leave. I make sure to write their names down when
they come on shift and remember at least one special thing they did for me. I’m
sure they don’t get thanked very often and their job is HARD.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->My own tumbler from home—I like to have my own
cup because it fits more, it’s pretty, and you never know when those nurses are
going to get you some more drink or whatever so having your own cup and
beverages on hand is a great lifesaver! <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->An extra bag for dirty clothes—may I recommend a <a href="https://www.mythirtyone.com/629909/shop/Catalog/ItemDetail/4446">Thirty One Essential Storage Tote</a>? (I actually use this to carry the comforts from home in on the way up, then use it as a laundry bag there, then repack it with the comforts from home on the way back since EVERYTHING gets washed upon returning home worn or not. If it was in a hospital it is dirty. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: inherit;">o<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Plastic Baggies—These come in handy for so many
different things you would be so surprised. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNP3fVUYDIZLh6xrC0AkUQuLfqTviaFMWI1tNdLQR2hTTTqroYL6cfINAIwlrKmdZvBSuZIeAYDf2X4617MnPhrqhyphenhyphenppFzCOhan6XSr9XN_ErfRjpt_03sea_VsUInFr6jQe7o4dn5MA/s1600/IMG_1176.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNP3fVUYDIZLh6xrC0AkUQuLfqTviaFMWI1tNdLQR2hTTTqroYL6cfINAIwlrKmdZvBSuZIeAYDf2X4617MnPhrqhyphenhyphenppFzCOhan6XSr9XN_ErfRjpt_03sea_VsUInFr6jQe7o4dn5MA/s320/IMG_1176.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All my Miscellaneous Items<br /><br /></td></tr>
</tbody></table>
***If you can't tell I might be an Independent Sales Consultant with Thirty One Gifts. This is how I help pay my insane medical bills that help keep me alive (specifically for my TPN that is not covered by my insurance and is my sole source of nutrition). If you like what you see or you would like to look at some of our other products, please feel free to visit <a href="http://www.mythirtyone.com/629909">My Thirty One Site</a> and do some ordering. I would so greatly appreciate it!!! Thank you so much!! <div>
<br /></div>
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I hope this blog gave you some useful information!<br /><br /><div class="separator" style="clear: both; text-align: center;">
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<o:p><span style="font-family: inherit;"><br /></span></o:p></div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com1tag:blogger.com,1999:blog-170807854514947077.post-18417814730381576872015-05-24T14:44:00.001-04:002015-05-24T14:44:40.542-04:00Five Minute Friday (on a Sunday, again): Rise<div dir="ltr" style="text-align: left;" trbidi="on">
As soon as I saw the word 'rise' the Chris Tomlin song "I will rise" popped into my head and it's been playing on repeat ever since. I confess the only words that I knew off the top of my head were "I wiill rise when you call my name, no more sorrow, no more pain" but those words were enough to get me to go and look up the lyrics and see if I wanted to write about this song in this blog about the word rise.<br />
<br />
Let me just say. As soon as I started reading the lyrics. I just sat there. I was like. Um, I've never really <b>listened</b> to this song, why not, why has God been trying to get through to me so long and it took until just now to get through to me (P.S. this was started on Friday...so Friday is when this happened not Friday).<br /><br />In my opinion, and you can ask almost anyone, my life is in complete shambles. There is nothing going well and there is no where to go but up...but I do still believe I am going up and I have been completely satisfied, happy, calm, and happy with EVERY road block that has been put in my face. I mean I have been so sick, so, so, so sick and I'm just like ok, we get used to this new way of life right now. I got academically dismissed from my university (don't even ask) and I'm just like ok, I'll go back next year, or not at all. There has to be a reason for all this. I'm having some friend issues, no problem, just move on. Getting harassed on Facebook, just delete the conversation and go about my day. I am telling you, nothing can get me down. I have complete peace when life SUCKS and I couldn't figure it out.<br />
<br />
Then I read these words and wow. Just wow.<br />
<br />
<blockquote class="tr_bq">
<div class="verse" style="box-sizing: border-box; line-height: 16px;">
<span style="font-family: inherit;">"There's a peace I've come to know<br style="box-sizing: border-box;" />Though my heart and flesh may fail<br style="box-sizing: border-box;" />There's an anchor for my soul<br style="box-sizing: border-box;" />I can say, it is well</span></div>
</blockquote>
<blockquote class="tr_bq">
<div class="verse" style="box-sizing: border-box; line-height: 16px;">
</div>
<div class="verse" style="box-sizing: border-box; line-height: 16px;">
<span style="font-family: inherit;">Jesus has overcome<br style="box-sizing: border-box;" />And the grave is overwhelmed<br style="box-sizing: border-box;" />The victory is won<br style="box-sizing: border-box;" />He is risen from the dead</span></div>
</blockquote>
<blockquote class="tr_bq">
<div class="verse" style="box-sizing: border-box; line-height: 16px;">
</div>
<div class="verse" style="box-sizing: border-box; line-height: 16px;">
<span style="font-family: inherit;">And I will rise when He calls my name<br style="box-sizing: border-box;" />No more sorrow, no more pain<br style="box-sizing: border-box;" />I will rise on eagle's wings<br style="box-sizing: border-box;" />Before my God, fall on my knees<br style="box-sizing: border-box;" />And rise, I will rise"</span></div>
<span style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;"><br style="box-sizing: border-box;" /></span></blockquote>
It could also be because I've been channeling my inner Meredith Grey since we are so much alike, as this was the last line of the season finale and it REALLY spoke to me and that was 2-3 weeks ago, long before this word 'rise' was presented to me. I posted it as a Facebook status and everything,,,that must mean it was life altering...haha...<br />
<blockquote class="tr_bq">
<span style="font-family: inherit;"><span style="background-color: white; color: #141823; line-height: 19.3199996948242px;">"Ok we have to dance it out. Let's go...people can be broken, sure. But any surgeon knows what's broken can be mended, what's hurt can be healed, that no matter how dark it gets, the sun is going to rise again." -Meredith Grey</span> </span></blockquote>
All I know is that this year I made my word for the year (the thing I do instead of doing resolutions I pick a word to hone in on for the entire year and work on developing) 'Beautiful Redemption'. And I really don't think you can have a 'Beautiful Redemption' without the ability to rise. I know I am strong enough to fight the battles put in front of me. I know I right now I am broken, I know I am hurt, I know it's dark. But I also know that I will be mended, I will be healed, and the sun will rise again.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiELKMPS_R-R1_VQ31Ypy-a7pjiwyVUB4M_AMnhabQyee4ZXCGZBWRvZp5UCsox5QS4EaYh2XwLAJEVPzVsFLXQUSbfee8BmuwFCyU6jwgooGDsFjVWU5TEGM_1de9G7b0loEYkdSf8gg/s1600/c2d4bc91f0a5a8c169f16bcdc6db29b2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiELKMPS_R-R1_VQ31Ypy-a7pjiwyVUB4M_AMnhabQyee4ZXCGZBWRvZp5UCsox5QS4EaYh2XwLAJEVPzVsFLXQUSbfee8BmuwFCyU6jwgooGDsFjVWU5TEGM_1de9G7b0loEYkdSf8gg/s320/c2d4bc91f0a5a8c169f16bcdc6db29b2.jpg" width="240" /></a></div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-89454892185582052912015-05-17T12:11:00.001-04:002015-05-17T12:11:41.210-04:00Five Minute Friday (on a Sunday): Follow<div dir="ltr" style="text-align: left;" trbidi="on">
I'm joining the <a href="http://katemotaung.com/five-minute-friday/">Five Minute Friday</a> revolution as of now and really meant to write on Friday (and earlier today) but for some reason my heart always wants to blog in the middle of the night or at random times not on schedule.<br />
<br />
If you are unsure of how Five Minute Friday works or what the heck I'm talking about head to the link above and there will be complete information explaining how it works but basically it goes a little something like this...<br />
<br />
Every Thursday night a one word prompt is posted then on Friday you write for five uninterrupted, unedited minutes about what that word means to you right now, I think this will help keep me more faithful in my blogging and in my spiritual journey as I've not been blogging much lately (which will be explained more in depth this upcoming week, I promise...but for now let's get this FMF project underway with this week's word of <b>follow</b>.<br />
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~<br />
It's really interesting, no coincidental, no God's perfect timing that the word this week is follow.<br />
<br />
If you know me in real life or through Facebook, you know I've just come through the <b>HARDEST</b> month in my life by far...and let's just say I did not exactly come out gun's a blazin'.<br />
<br />
After being sick non-stop since October/November (there will be a more detailed blog post to come in the near future about this) my body finally decided it had had it around April 20th and I almost succumbed to my mitochondrial disease due to a sinus infection, ulcerative colitis flare, C. Diff, almost pneumonia, electrolyte imbalances, normacytic anemia, and my gastroparesis all being butt holes (literally) and landing me in the hospital for a full week with little hope and extreme frustration and a sense of gravity of the situation that led me to believe this was it, My number was up. I was going to die.<br />
<br />
But alas, as you can tell, I made it through just fine, Or so the doctors say.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZNxVjHGMMn5Pp5wy05BQjnCupyy0pzjN629PeGJbc2Fg9YM49R0FxldyLXxwYdUb3nWUk1mi4dnSm85TnPKtTULELhqgx5ixkRdjH2GdtVAtGv0e-SlQfxaXxxaBd0RnyJJ2ifErA4w/s1600/a9abf4d8f099cfc9c6b9d61ac48d25be.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZNxVjHGMMn5Pp5wy05BQjnCupyy0pzjN629PeGJbc2Fg9YM49R0FxldyLXxwYdUb3nWUk1mi4dnSm85TnPKtTULELhqgx5ixkRdjH2GdtVAtGv0e-SlQfxaXxxaBd0RnyJJ2ifErA4w/s320/a9abf4d8f099cfc9c6b9d61ac48d25be.jpg" width="293" /></a></div>
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In reality, my whole life fell apart.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5rv0F4Y3Rhij4miHUKfuJLNcLhaavv_6dRbdr2QbBmpIsnrf2JdFBeRAnT8tcVHc9-JX63SyZZYlcwx9klqq_4oxS1yLu2_5LdLZNK5oyOPCzcliVj91HZQa9dk0rcnaqKNNyOajbYg/s1600/0d20c0a214bfcb3b115fa96015bbf303.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5rv0F4Y3Rhij4miHUKfuJLNcLhaavv_6dRbdr2QbBmpIsnrf2JdFBeRAnT8tcVHc9-JX63SyZZYlcwx9klqq_4oxS1yLu2_5LdLZNK5oyOPCzcliVj91HZQa9dk0rcnaqKNNyOajbYg/s320/0d20c0a214bfcb3b115fa96015bbf303.jpg" width="214" /></a></div>
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I was changed from tube feeds (feeding formula into my small intestine) to TPN (total parenteral nutrition or feeding nutrition through my veins) because my colon and small intestine couldn't take it anymore.Now I'm on even less oral feeding and the oral feeding I do do, because it brings me pleasure is extremely painful and causes a whole host of symptoms no one wants to know about. The discrimination findings came back about *that* professor and it was determined that he was not performing any discriminatory acts because it was he said/she said. And because I was in the hospital the last week of classes I was not allowed to complete my courses and got a 0.0 GPA this semester and was academically dismissed from my university. Because all the sudden after having a 3.85 GPA for the whole time in the program, I deal with this one professor who states to my professors this semester that I have a "history of not completing work on time" and do not need an extension even though I'm in the hospital. ME. A person who has never received a project back because it was always kept to be used as examples for the next classes coming up. ME. Who with 25 chronic illnesses never missed a day of school unless I was forced to,<br />
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So, my dear readers, when I saw that this weeks word was follow. I was like, "ha, that's funny. What the heck am I supposed to follow? Everything in my life has just been taken from me. All my goals, dreams, plans, my health, my social community, my friends, my money. What is the point of following anything?"</div>
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I'm telling you, I don't usually openly discuss my anxiety and depression on this board. But everyone with chronic illness has it and if they tell you they don't your lying. And I'm telling you, right now. I am at the bottom of the <b>ABYSS. </b>I am <b>DROWNING</b>.<b> </b>And I'm not gonna lie about it, or hold it back, because I feel it's imperative that I tell the truth. </div>
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<br />
Luckily I'm a Christian and I soon realized that all I needed to follow was God's plan for my life and that is all that mattered and sometimes His plans are not what we want, but what we need, and always are in His perfect timing. Right now I am leaning on Him, trying to follow him into the uncharted territories that I am treading in ever so overwhelmingly. Trying to live out the Bible verse above from Ruth 1: 16 that states, "Where you go I will go, and where you stay I will stay." I am trying my hardest to trust, follow, and <b>LEAN IN</b> to God when it seems so impossible right now.<br />
<br />
But I think I am on the right track, Things keep getting brought to mind of what I can do with where I am right now (help in support groups with my already learned medical knowledge, appeal to the school to get back in, become a patient advocate, rock out with my 31 business so I have <i>some income </i>besides my disability). And I think these positive thoughts are coming to my head because I am trying, at least attempting a little to <b>FOLLOW</b> God's plan for my life. I'm trying to be still and listen. I'm trying to see where this leads, I'm trying not to do this on my own. And when we have the support of not only our earthly friends (which I have a ton of--thanks guys) but the support of God and we follow His will for our life, nothing will go wrong, and He will create beauty from the ashes.</div>
Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-82768831197827988242015-04-07T23:59:00.004-04:002015-04-07T23:59:55.434-04:00Health Activist Awareness Month Again...Wordless Wednesday<div dir="ltr" style="text-align: left;" trbidi="on">
Hey Y'all,<br />
<br />
So I totally forgot it was April. So I totally forgot that it was Health Activist Awareness Month. So it's April 7th (basically 8th because it is 9 minutes until midnight), so I am getting ready to try to catch up because I LOVE health activist awareness month challenge! It brings so much awareness and it brings me so much discipline. So I apologize in advance for the multiple blogs back to back.<br />
<br />
So here we go!<br />
<br />April 1st: Wordless Wednesday: Since this is the start of HAWMC, post a picture
that shows how excited you are for the next 30
days. We always love a good Health Activist
selfie!<br />
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-77313801466811702532015-03-07T23:58:00.002-05:002015-03-07T23:58:28.523-05:00Broken Halleljuah<div dir="ltr" style="text-align: left;" trbidi="on">
***Disclaimer: This blog will contain the lyrics to the song "Broken Hallelujah" by <a href="http://theafters.com/">The Afters</a> centered, quoted, and italicized throughout this post. These are not my words, but they are the words of brilliant people who know exactly my heart at this time. I take no credit in what they have written and I encourage you to go to their website, listen to their music and perhaps download a song or two, this one for sure is highly recommended.****<br />
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In the past four months my life has completely been turned up, down, sideways, forwards, backwards, and everywhere in between. I have literally been sick with a sinus infection for four straight months. I have been on antibiotics for two months. Because I have an infection and I'm on antibiotics I can't get my Remicade infusion that helps with my Ulcerative Colitis so in addition mito the already bad effects of antibiotics on a typical body, add in a flaring UC body, a failing GI tract on a feeding tube, and just general persistent nausea and a miserable person you have. And I can't get the Remicade again until my infection is gone and I've been off antibiotics for two weeks. We know now that the infection isn't going away without surgery and it could still be another 2 months before we can do that and have the 2 week recovery period be over. I am miserable. I am SO sick and am getting so depressed because I just cannot get better. And I am SO upset that all of this progression of my disease is happening because of a sinus infection, which would usually barely phase a typical person but for a week or two and it's literally got <i>my</i> entire body shutting down for months on end. I literally cannot find the strength to stand or get out of bed every day, but I have to. Because I have so many responsibilities in life for someone who is on disability and isn't necessarily supposed to have a large amount of responsibility to begin with. but responsibilities don't disappear just because energy and health do.<br />
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<i>"I can barely stand right now.</i></div>
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<i>Everything is crashing down,</i></div>
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<i>And I wonder where you are."</i></div>
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I have friends that are going through <b>impossible</b> circumstances right now. Friends that I love dearly and deeply. Friends that live all over the country so I can't run to them, hug them, and hold them and let them cry with me, to me because that's what happens when you're chronically ill. You don't have any friends in your "real" life. In your everyday life. No one wants to be around you because you are sick, so they dump you and run away. So my friends are in my Facebook support groups and they are seriously some of the best friends I could ever ask for. Such good friends that I can almost thank God for giving me illness because otherwise I would have never met these truly genuine friends. But dear goodness it's hard to be there for them. To sit there on the phone with them. To listen to them cry and scream and shout 'Why me again?' when they are dealing with these impossible situations. And then there is silence...because I have no idea what to say.</div>
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<i>"I try to find the words to pray</i></div>
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<i>I don't always know what to say, </i></div>
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<i>But You're the one that can hear my heart."</i></div>
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Would you know what to say when you are on the phone talking to a friend who is dealing with the possibility of losing their child to Child Protective Services because they have been accused of medical child abuse and Munchhausen's by proxy...again. Or that they may lose their child because they have so many bruises the doctor thinks they are being abused when, in fact, it's because they have a child with a condition that causes easy bruising but the doctor has never heard of it so it must be child abuse instead. Or that they are going to lose their child because they are too unwell due to their chronic illness to take care of their child and their ex tries to take their child from their custody because of that. Or their current relationship is in a constant state of flux due to the fact that one of the members in the relationship is sober on and off and on then off again. And when they're not sober they are extremely emotionally abusive and get very close to becoming physically abusive, but when they are sober they love them so much and just can't leave the relationship. Or they have a child that is having their 3rd brain surgery in 3 months. Or on and on and on....What would you say? What would you do? My only answer is to pray and wait and listen and see what God wants me to say and pray some more and then find out from God that I should probably not be saying anything at all...and then I just listen to them...and cry with them.</div>
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<i>"You know the things that have brought me here.</i></div>
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<i>You know the story of every tear.</i></div>
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<i>'Cause You've been here from the very start."</i></div>
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I've also started having more of the all to unfortunate realization that I live in a terminal world. A world with a deadline. I won't say an expiration date because we all know that I believe that death is not the end, but the beginning of a much better totally healed life. But a deadline. I'm meeting more and more friends that have the word terminal on their name tag like me. But with the meeting of these people, is the obvious saying goodbye to them far, far, far too soon. A 16 year old girl, an 8 year old boy, a 42 year old mother, a 35 year old father, etc, etc, etc. Just this week I personally know of a middle aged father, a 5 year old boy, and an 18 year old girl all succumbing to their illnesses. Wonderful, amazing people all of them. All gone far too soon. For I realize the longer I live in the terminal world the truer the statement is that 'only the good die young.' And I wonder why. I try to figure out God's plan. Then I wonder when.</div>
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<i>"Even though I don't know what your plan is,</i></div>
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<i>I know you're making beauty from these ashes."</i></div>
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Don't get me wrong. Living in the chronic/terminal illness world has been some of the best living I have ever done. In fact, I almost wanna say I wouldn't have not known how to live had I not been told I was going to die. I live with hope, passion, gratefulness, joy, thanksgiving, love, and an ability to see beauty in things others cannot see. I have learned to live for the day and not for tomorrow. I have learned to find extreme awe in weensy things. I have found my passion in life and have had the courage to go after my passions and achieve them no matter what is standing in my way. But as seen above I have also seen an insurmountable amount of pain, and this post doesn't even cover the half of it. But with God's help, I still am able to maintain that He is there. He is holding me in the palm of his hand and is wrapping me up tight. And He has this journey that I'm on. And I will continue to call his name. </div>
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<i>"I've seen joy and I've seen pain.</i></div>
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<i>On my knees, I call Your name.</i></div>
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<i>Here's my broken hallelujah."</i></div>
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At the present moment however. I feel like I'm drowning. I feel like I'm in a room that is just a square room with no windows, no doors, no grooves on the walls or anything and it's shrinking faster and faster and I can't get out. Nothing to hold myself up. Nothing to tell me what to do. Nothing is left. I am tired. My body is tired. I have been fighting for so long. I did have school and my passion to become a dietitian and help others with chronic illnesses to hold onto but right now even that is slipping away from me, and I can't make it stop. I'm trying to make it stop, but the ultimate decision isn't mine. I'm empty. I'm weary. All I can do is literally give my <i>empty</i> self to God. And keep believing He is holding me, wrapped up tight, in the palm of His hand.</div>
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<i>"With nothing left to hold onto,</i></div>
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<i>I raise these empty hands to You.</i></div>
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<i>Here's my broken hallelujah."</i></div>
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I'm not there yet, but I am progressing quickly. I am losing my ability to do things that I really enjoy. I can no longer drive longer than about 20 minutes without falling asleep at the wheel. I can't do any type of physical activity/exercise which used to be my life. I can no longer even focus on my schoolwork very well anymore. This will get to a place where I will literally lose everything. And it will be a painful-physically and emotionally-journey. I will deal with more issues daily like all those listed above. I will deal with injustices of insurance companies and not getting the treatment I deserve. I will be scared. I will be tempted to lose my hope, my joy, my gratefulness, thanksgiving, my passion, my love, and my ability to see beauty.</div>
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<i>"When all is taken away, don't let my heart be changed.</i></div>
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<i>Let me always sing Hallelujah.</i></div>
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<i>When I feel afraid, don't let my hope be erased.</i></div>
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<i>Let me always sing Hallelujah."</i></div>
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If I could have just ask for 3 things in my chronic/terminal illness life at this point, it would be the knowledge of knowing that I am strong enough to not lose my hope, passion, joy, love, gratefulness, thanksgiving, and ability to see beauty. That I will continue to believe with all my might in the quote: "I'm realistic, I expect miracles." And that I will never stop singing my broken Hallelujah.</div>
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<i>"I will always sing.</i></div>
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<i>Here's my Broken hallelujah."</i></div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-23269463194060924732015-01-02T20:46:00.000-05:002015-01-02T20:46:29.447-05:002015: A Year of Beautiful Redemption<div dir="ltr" style="text-align: left;" trbidi="on">
Every year at the beginning of the year, I choose one word that I am going to focus on for that year. I got this idea several years ago while listening to the radio in the car. Usually people make New Year's resolutions. But seriously, I can barely keep things constant in my life for one day...heck one hour sometimes I can't keep things on track.<br />
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So the whole premise of what I try to do is keep in mind one word that I focus on throughout the year and try to live with that word in mind intentionally and live my life that way. So far I've used the words: faith, ambition, hope, and joy.<br />
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Even if i <i>try</i> to live this way for the whole year, it is still <strike>not always</strike> <b>NEVER</b> successful for me to live with that 'intention' for the whole year, each day, all the time--hence why I know I will never succeed at a list of resolutions...haha...if I can't even come up and follow living by one word.<br />
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This year though, I need to have two words. It's what I've been feeling. It is clear to me.<br />
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You see I never really pick my word, my word picks me. Every year.<br />
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After the horribly rough year that I had last year--living my first full year knowing I have a terminal illness and dealing with a discrimination situation with school beyond reproach, I need a year of healing. But healing is such an obvious, yet abstract word for someone like me. So this year two words have picked me. This year, I will live a life of <b>BEAUTIFUL REDEMPTION</b>, as best I can that is.<br />
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Redemption is defined as: the act of making something better or more acceptable; the act, process, or an instance of redeeming. </div>
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Redeeming is defined as: making a bad or unpleasant thing or person better or more acceptable. And to redeem is to make (something that is bad, unpleasant, etc) better or more acceptable; to free from what distresses or harms; to change for the better; repair/restore; to atone for.</div>
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After what happened with school, we all know that I have some things that I want redemption for. </div>
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Enough said.</div>
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I know God's got the redemption in the bag, but it's not bad to be reminded of that, and to use my life, my story, my passion, my drive and ambition to get redemption for myself also. Or at least make me feel like I am redeemed, even if i do not get it to the level that I want it to be attained. </div>
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I can rise above. Even if it never gets back to those involved, I will know that I did the best that I could do with what I had and maybe helped some people along the way. </div>
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Beauty is defined as: the quality or aggregate of qualities in a person or thing that gives pleasure to the senses or pleasurably exalts the mind or spirit; a beautiful person or thing; a particularly graceful, ornamental, or excellent quality. </div>
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Lately, I've been stuck on this word <i>beauty</i>. </div>
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What does it mean to have beauty? </div>
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It's so hard to feel beautiful when you spend so much of your life curled up in bed and feeling so bad and on the days you feel your worst you end up dressing up because you are sure if people see how you truly feel (if they could see an invisible illness) they would be horrified and turn and run the other way. </div>
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It's hard to feel beautiful when you are 29 years old and basically go completely bald and have to deal with that--until you find the <i>perfect</i> wig that is. </div>
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It's hard to feel beautiful when you're in a wheelchair or walking around with a tube hanging out of your abdomen and a line hanging out of your chest, even if they are all helping you have a better quality of life and keeping you alive. </div>
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But then that is when <strike>you </strike>I have to remember that the definition of beauty talks more about qualities than aesthetics and it makes it all alright. </div>
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I've realized that again, by sharing my passion and purpose I am beautiful. </div>
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I have since come to love the phrase "Be your own kind of beautiful," because everyone has something beautiful about them.</div>
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Each day this year, I resolve, no, intend to remember everyday that I am living a year of <b>BEAUTIFUL REDEMPTION</b>. </div>
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I will find a word, a picture, a thought, a deed, something everyday that makes me feel as if I have satisfied my intention of beautiful redemption that day and I will document it somehow. Instagram, Facebook, blog, journal, somewhere. Then at the end of the year, I can look back throughout the past 365 days and see that because I have an awesome life and serve an awesome God that I have, in fact, been beautifully redeemed. </div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com1tag:blogger.com,1999:blog-170807854514947077.post-2330407586403768762014-12-30T02:13:00.000-05:002014-12-30T11:10:39.514-05:00Everything Has Beauty <div dir="ltr" style="text-align: left;" trbidi="on">
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"Everything has beauty, but not everyone can see."</div>
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~Confucius</div>
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For those of you that know me from the outside world, yes, this is *THE* blog. The blog about why I cannot continue onto internship in the dietetics program at school and how I have dealt with it and what I think about it. P.S. For me to properly convey how I feel it *will* be long, so cuddle up with some hot cocoa, and I promise to break it up with some pics. :)</div>
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You may be confused by the title. You may be wondering why it's not more vengeful, more about the topic that will be discussed. More about, well, something negative. Not something so beautiful, as, um, beauty. </div>
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But those of you that have been around. Those of you that know me. Those of you that get me and have read my blog before....know that I could go no other way than to take such a horrible experience in my life and turn it into a thing of beauty. I mean, that's kind of my MO. This blog has been about turning crappy situations into beautiful outcomes from the beginning,</div>
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So I am going to tell the story. The truth. The good, the bad, and the ugly. But I'm going to show the beauty that cane from it also. Because everything has beauty. Even if you (*I*) can't see it yet.<br />
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First, some inspirational quotes that got me through the semester. These are the kind of things that I was clinging to over and over and over again!<br />
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Everything I learned this past semester, what was supposed to be my last semester in lecture classes, was so interesting, and most importantly applied to me, so kept my interest and made me want to learn. It didn't matter to me that I felt like crap, all I wanted to do was learn. All I want to do is become a Registered Dietitian. The number one thing I want on my bucket list of this life that I have left to live that no one knows how long it will be anymore is to have my name be 'Meggers', MS, RD, CD, CNSS. And at this point that doesn't look like it's going to happen for while, if it happens at all at this point. But there is still beauty in the story.<br />
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Basically, what happened is this. Our program works like this (and no I'm not gonna name it and no I'm not gonna name the hospital that I was at doing supervised practice...and if you know please do not leave the information in the comments. I'm not looking to slander and liable here. I'm looking to tell my story so others can know this still <span style="font-weight: bold;">DOES</span> happen...and it is not okay!) we do 4 semesters of classes. 1st semester is food service. Some other classes thrown in there but primarily food service classes with food service "supervised practice time (aka clinical). The second semester is the same general way but with community heavy classes. The third semester is for food systems management class (5 credit hours), medical nutrition therapy (5 credit hours), and 2 credit hours of supervised practice I of Medical Nutrition Therapy. The 4th semester is "Internship" but is technically 2-6 credit hour classes of Food Systems Management Supervised Practice and Medical Nutrition Therapy (MNT) Supervised Practice II. If we complete all the program successfully we at a graduate level we get an MS and are registration eligible. Then we can take the national licensing exam and if we pass that we become a Registered Dietitian and depending on what state we are we would become also LD (licensed dietitian) or CD (certified dietitian) and unfortunately Indiana is one of the last 4 or 5 to be CD so I would become a CD. Then I want(ed) to continue to get another certification called the Certified Nutrition Support Specialist (CNSS) which basically means I would be a tube feeding and TPN (peripheral and IV feeding guru) :). And dang, did I look good, and <b>HAPPY</b> as a dietetic student, no matter what the situation was, just take a look for yourself.<br />
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If we all remember back to last year I got sick during the 3rd semester, so I got the <strike>awesome</strike> degrading pleasure of retaking that semester this year. The one class, the food systems management one, wasn't that bad. It was just a waste of my time basically. This other class was taught by a PhD student who had done his undergrad and masters at the same university, was younger than me, and male. Basically, long story short I was discriminated against because of my disabilities multiple times a day, hour, minute, second every day for the entire 4 month semester in ways that I never believed imaginable. The only thing I could do is remember some of the brighter times and happier times and more beautiful moments of my life to get me through the days.<br />
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I had known the professor previously as a peer and we didn't get along, but I thought we would be able to put that aside and act in an appropriate superior-student relationship...apparently I was wrong. It all started with a rash, The rash to end all rashes--there is a picture in the health collage below. I wore a skirt to school, went to supervised practice, then the the next day (while wearing a skirt to class again or capris, but your could see my rash) got pulled into the main conference room in the office with the professor, the coordinator of the program, and the associate dean of the college and the person over the applied health sciences department. They mentioned that I could be a "public health risk" not only because of my rash but because of some "behaviors" that I have with my tube, I was told I could not return to supervised practice (clinicals) until these matters were resolved, it was determined I had no infectious diseases, it was determined by my specialists I was physically able to complete my assignments and supervised practice, I was informed of and abided by certain conditions with my feeding tube, and signed a contract to ensure I would adhere to these requirements, or I would be removed from the hospital immediately and then would therefore be removed from the program because if I am not at the hospital I cannot complete my supervised practice which is required, and thus would not be able to complete the program. The contract contained such stipulations such as: will not show stoma (the place where the tube actually goes into my body--why on earth would I do that?), will not mess with feeding tube at all--even if it beeps (I have to excuse myself and go someplace secret to fix it when all I have to do is simply hit one button), will not have any part of feeding tube visible (including the 4 foot part that goes from the formula bag to the pump--it was a real doozy figuring out how to hide that), will not administer medication or change formula outside of bathroom where no one can see me (what a great place to get an infection), will make sure that there is no odor coming from me (how flattering), will not speak of any of my medical conditions, it had to be documented if I needed a wheelchair or did not need a wheelchair--there could be no in between (like if I had a bad day I could use it and if I was having a good day I didn't have to use it) it had to be one or the other, I had to make sure on Thursdays (the day I had supervised practice) I had energy and was all in because I couldn't be tired and look sickly while I was there....ummm....do they even know what mitochondrial disease is?....it's not like I can just turn on my ATP production, if so, I would have done that a long time ago....and there were several other things I believe but those were the heavy hitters. And I was on a one strike you're out basis so if I messed up once it was over. And I didn't even know I had messed up a first time, so I was terrified to go back because I had no idea how on earth I was going to live to these standards when I wasn't aware I had broken them in the first place (and I was told everything was on the list because it is something that I had done the first day and was inappropriate...but I still don't remember doing any of these things...honestly). </div>
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But go back I did. With my head held high. Like nothing had happened at all. Ever. Following all the rules. For the entire rest of the semester. And never spoke of the contract. And did the best job that I could do. And did so with the best attitude I could have. The only time I spoke of anything slightly related was when I mentioned how to make up hours because before it was all said and done it took me being away from supervised practice for 3 full weeks to fulfill all the requirements, which was 12 hours I needed to make up. I repeatedly asked multiple people how to make up the hours, but they never replied so I ended up figuring out how to make up the hours on my own. Which I did, and I ended up finding better and more applicable opportunities to what I wanted to do than what I would have done just doing the typical hours involved if I had gone the original 3 weeks. Things ALWAYS work towards good. Always. You just have to remember that. That's one of those quotes up there at the top. "Sometimes it ends up different and it's better that way."</div>
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But it didn't just stop there. In the interest of your time (and my protection)....here's the quick rundown of some of the other things that occurred throughout the semester that led to my failing grade in the lecture class and my grade "below a B-" in supervised practice which means that I cannot go on to my internship next semester. I am not technically kicked out of the program, I just cannot continue on to the next portion until I redo those 2 classes for a <b>THIRD</b> time (1 time because of the hospital semester, 2 times this semester, and time 3 <b>IF </b>I go back). We just aren't allowed to make below a B- in any content class and move on and for some reason despite getting all meets expectations on my evaluations, attending all hours, and writing a banging case study for supervised practice I got a C and despite all the crazy preparation I did for the lecture class, feeling like I made an A on every test (but getting them back and seeing I made far from that), living with most of the diseases we covered in class, and writing an even more banging 20 page paper on multiple system organ failure for my final paper I got an F.</div>
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I <b>never missed </b>a class period--don't even remind me of the girl that sat behind me that missed an entire class because she had an abdominal ultrasound, came the next class period, was asked where she was and said "I had to get an abdominal ultrasound, it was the most painful test I ever had, I didn't feel like coming in, they think I have severe stomach issues now,"...as she was stuffing a slice of pizza and a bagel down her throat at 9 AM. Severe stomach problems my ass, says the girl in front of her...eating from a <b>TUBE!</b> I was never late. I volunteered to stay late. I was the only one who answered questions in class, so I know I knew the content. I followed my contract and never broke it. For every single chapter I made a study guide that ranged from<b> 20-30 pages </b>that included diagrams and then I highlighted every single part that he mentioned in class. I voraciously took notes in class, never looking up, just writing <b>every word</b>, while also recording the class to listen to while studying. I made over <b>650</b> note cards for just that one class. For every disease I made a <b>flowchart </b>of what the medical information I needed to know (definition, epidemiology, etiology, pathophysiology, treatment, etc) and nutrition information I needed to know (assessment process, diagnoses, interventions, monitoring and evaluation). I made a <b>game</b> for how to write PES statements when I was told with only 4 weeks of the semester left that he had heard I was having difficulty writing PES statements (which are basically the whole foundation of our profession and VERY important) so it was like I had no time to correct myself. So I made a game and practiced every night with my game to try to match the problems with the etiologies and signs and symptoms and then determine what intervention I would use. And he would still tell me I was not getting it right.</div>
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It was not until my last day at supervised practice (hypothetically--no confidentiality is broken, this is a typical patient scenario), when my role model (the only CNSS in town) asked me "Why on earth I was writing that PES statement?" I told her, "because I looked up the choices from the book and I didn't know about the patient's intake because they were sedated and trached (we worked in the ICU together for 6 weeks) and we had no previous food history so I picked malnourished." She said, "well you don't know if they are malnourished either." I said "well, that's the only other choice." She said, "What do you mean, what is their nutritional problem right now. Why are we here?" I said, "they can't eat, tube consult." She said, "so what is that?" I said, "inadequate oral intake related to NPO status as evidenced by sedation and intubation." She said, "PERFECT! We don't care about their nutrition diagnosis before they came here, we care about what we can fix now, today, why we are here in their room NOW!" </div>
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Ya know. We start learning PES statements the spring before this MNT semester I just had. So I had been introduced to them for over a full year because of my break. And <b>NO ONE</b> had taken the time to stop and say that we are talking about right now. While they are in front of us. Admitted. In our care. And here I am, someone with a list of 23 working diagnoses who wants to fix the person as a whole and is thinking of the big picture and is getting points marked off for trying to fix the <b>WHOLE </b>person because no one took 2 seconds to stop and ask me <b>WHY</b> I was writing the PES statement the way I was writing it. For shame. This could have changed the entire outcome in itself. Anyway. That's the stuff I did to avoid being in this mess. Below are some pics of the "evidence."</div>
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Speaking of these 23 'working diagnoses' I have, another thing that was commonly mentioned to me by my very loosely titled 'professor' was that I tended to use my disability to skate by on my work and to get out of requirements that were necessary for others and that I thought I was better than everyone else, didn't need to be as in depth in my learning as others because of my disability and that I would never get anywhere in life if I didn't quit using my disabilities as a crutch. This conversation stemmed from when I went to the professors office and mentioned that I was not doing as well on tests because I had extended time through the disability services and he was not allowing me to finish my testing and I was therefore failing my exams because I could not finish even though I should have been allowed to by the legally abiding ADA laws since I had documentation on file of being a student with a disability and having accommodations. For example, most of the tests that I took last semester before I had to take a sabbatical due to my health are the only ones we got to this semester and I out performed majorly last year, from the hospital, while having painful and invasive procedures every other day, if not every day, on very high doses of strong medications, and not having the benefit of being in lecture. Just as one example the first test for both classes (Ch. 6- the documentation process/Ch. 7- fluid and electrolyte balance), I made an 88% last year, and this year I made a 55%...solely because I missed 35 points because I wasn't allowed to finish those 35 points...but I have extended time on file at the disabilities office. During another test, it was a particularly cold day and the classroom was warm and toasty. The fire alarm--which has extremely loud sirens and flashing lights-- went off during our test, not once, but twice. So we had to stop our train of thought,go stand outside in the cold, not talk to anyone, wait for the building to be cleared, come back in, and start taking the test again. Then about 30 minutes before the end of the class period the professor comes over and says, "Have you started the case study yet?" and I say no and he says you better get started because I doubt you'll have time to finish. So I freak, my stress hormones freak out and I finish, but don't do as well as I would have (I'm conjecturing) than if I had not been told that I will not finish...this too could have been avoided. I have a watch. Let me use it and be my own judge. When I was trying to explain why this was not okay for me, he said, "well, no one else had trouble finishing on time (which is not true, there were 3 of us there until the last minute and the other 2 did not finish) and I started to explain that it doesn't matter if <i>everyone else had no trouble finishing, </i>I'm <b>DIFFERENT</b>...but that would just lead back to the using my disability as a crutch debate so I just said thank you and left. </div>
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I constantly asked how I was 'using' my disability as a crutch and yet no one could ever give me an answer besides the fact that they thought I was trying to use it to gain sympathy to get my grades manipulated or to gain attention and 'look cool' since I had a feeding tube and that is what we were learning about in school, plus other conditions that were being learned about in class. Well, let me tell you what. I think I was doing the exact opposite....sort of...I may have been 'using my disability, but it's because I was using it to help develop my passion for what I wanted to do with my future, and I want to be able to help people who are in my same chronic illness situation. Despite my health situation, I almost did 'use' my health situation...as I way to propel me through and make my drive more passionate and make me more cognizant of the fact that I <b>WANT </b>to succeed without any adaptations or accommodations made for me and just be comfortable knowing that they're there if I need them. </div>
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The diagnoses that I officially have on record as of today that were congenital and have resolved or are still present, are chronic, and/or are terminal are: Mitral Valve Prolapse, heart murmur, atrial septial defect, endometriosis, PCOS, Celiac Diseases, Ulcerative Colitis, Orthostatic Hypotension/POTS/NCS/PAF (been all at one point or another but currently PAF), EDS-III, fibromyalgia, feeding dysfunction, gastroparesis, colonic inertia, mitochondrial disease, an unspecified neuromuscular disorder, Asperger's, anxiety, intestinal dysmotility, erosive esophagitis, GERD, respiratory failure (initial stages), and migraines. There is a list of <b>192 symptoms</b> if you compile the symptoms of all the diseases together and<b> I suffer from 135</b> of them on an at least <b>weekly if not daily</b> basis! Since the time that I re-enrolled in school and started attending January 20, 2012 I have had <b>45 in town doctors appointments</b>, averaging 1.5 hours,<b> totaling 62.5 hours or 2.6 days</b>. <b>46 out of town appointments</b>, averaging 5 hours each, totaling <b>253 hours or 10.54 days</b>. <b>41 procedures</b>, totaling <b>331.3 hours or 13.83 days</b>. And <b>101 infusions</b>, averaging 3.25 hours, <b>totaling 328.25 or 13.68 days</b>. I have been<b> inpatient 672 hours or 28 days</b>. This totals <b>1674.05 hours or 68.63 total days</b> spent doing <b>medical things</b> since being a student and have missed less than 10 hours of class minus my sabbatical!!! How insane is that? How can they say I use my disability when there are numbers like that?! I find <b>TONS </b>of personal beauty in the fact that I am able to overcome all of that, not focus on it, focus on the task at hand (school and thesis) and still get things done....and not only get them done, but get them done <b>WELL! </b>I came to school every single day, not missing once, never acting as if anything was off in between us. And that takes in itself, internal beauty beyond words can explain, because I knew in my heart that it was an uphill battle...but battle I did...and even though I failed. I won. </div>
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I won because he wanted me to quit. That first week. I still showed up. Every day. I did my best. I studied my ass off. I did what I could. I worked with a friend so that we could quiz each other. I did all my assignments. I kept a smile on my face. When it was pretty much made known that there was <b>NO WAY</b> I could pass the class I kept going and still never missed a day. That takes not only beauty, but integrity.</div>
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Right now, I do not know what is next for my life. I do not know if I will ever get to defend my thesis. I do not know if I will ever get to become a registered dietitian. I do not know if I will even go back to school. I do not know what my future holds health wise. I do not even know what tomorrow even brings for me as I continue to decline health wise monthly, weekly, and daily. </div>
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What I do know that whether I am having a good day, a bad day, out of bed, on the couch, in my recliner, in the hospital as a patient, in the hospital not as a patient but working with patients, dressing up, getting an infusion, going bald, or whatever is happening that day, that minute, that second...is everything has beauty....even if I can't see it yet, even if my beautiful is different from everyone else's...even if my beauty in life is this, here, now, writing, and not being a dietitian that is okay....because...<b>EVERYTHING HAS BEAUTY!!</b><br />
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And remember: "God made us the <b>WAY HE WANTS US</b> to be<b>. </b>There could <b>NEVER </b>be a more <b>BEAUTIFUL YOU!!! </b>Psalm 139:14</div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com1tag:blogger.com,1999:blog-170807854514947077.post-17182127981571019162014-09-15T01:06:00.001-04:002014-09-15T01:06:16.147-04:00Just One Word Can Change Your Life<div dir="ltr" style="text-align: left;" trbidi="on">
This post is kind of a combination post of both the ending of Invisible Illness Awareness Week--who's theme this year was Just One--and the beginning of Mitochondrial Disease Awareness Week.<br />
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You would think someone with as many chronic illnesses as I have and how long I have been dealing with them for that nothing could phase me anymore medically. I thought I was handling and pretty well adjusted considering the laundry list of illnesses, going to school, and working several jobs at a time (before everything went really downhill at around age 27),<br />
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But on December 30th, 2013 my whole life changed with one diagnosis, one lab report handed to me,,one appointment of being told what was possibly to come problems (on top of already intense medical problems), one sentence with the answer I've been looking for. Finally, just one diagnosis that explained why I had so many diagnoses at such a young age. Just one word: Mito.<br />
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That is the day I was diagnosed with mitochondrial disease. I found out I have deficiencies in complex I, III, and IV along with a problem where my cells can't convert carbon dioxide to oxygen, and I had red ragged fibers which meant I also had some type of unidentified neuromuscular disease. The thing about mitochondrial disease is--as it's name implies--affects the mitochondria of the cell, and cells are everywhere in your body, and if the cells aren't producing enough energy to operate or are dying than that part of your body will die too. We already knew that my GI system was pretty much completely shut down--as I was on tube feeds already--, I had neurological problems, cardiology problems, sensory issues, etc. After talking to the doctor we knew that it was going to be progressive. and we knew that it is terminal. In the course of one doctor's appointment, one hour, and one explanation I went from walking into the appointment with a not terminal illness and walked out with one. It just takes one thing to change your life. Mitochondrial disease has definitely changed mine.<br />
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It's amazing when you have 16 chronic illnesses already, that one could make such a big difference and impact on your life. Mitochondrial disease affects so many people and in so many different ways. Since being diagnosed my respiratory system, muscuoskeletal system, and immune system have become involved and the others that were already involved have progressed more. Mito is a progressive disease for basically everybody, and terminal for almost everybody too. It just depends on how long you stay controlled before you start to pass away. Mito takes the lives of children (more than childhood cancer each year), teens, young adults, and older than young adult adults. Today, one of my friends passed away at the age of 27--stupid mito. Mito also affects so many organ systems and what not you often have too many symptoms to list or even be able to think about. I take so many meds (and so many times a day) I can't even remember them all and have alarms set on my phone. I am pretty much permanently wheelchair bound when I'm out for long periods of time, and I'm tube fed through a tube in my small intestine 24/7. And I have countless specialists, therapists, treatments, infusions, counseling, etc. to be able to deal with all of my issues that mito causes.<br />
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I am so, so happy that I FINALLY know what is wrong with me and that I have a diagnosis and a kick butt doctor that is such a good specialist in mito that takes such good care of me. I'm glad we finally know the truth. But sometimes I think this truth just plain sucks. Incurable, progressive, terminal disease. Takes the lives of children and other ages frequently. Has symptoms that impact sufferers on such a high level that they can barely function. A need to take so many medications and supplements just to be semi-functional part of the time. A disease where you join so many support groups and get to know these people intimately and talk to them daily and then mito takes them far too soon, and their earthly journey is over, and your friend is gone. Yeah, sometimes knowing I have mito pisses me off. Because I know what's coming and I know what's been and it's just not fair.<br />
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Another thing about mito that you have to get used too (or even really any of the chronic illnesses I have) is that once you are chronically ill, your life doesn't turn out like you planned it...at all. Heck your next 2 hours may not be able to be planned and carried through. When you are a type A personality like me, this is the hardest part of chronic illness. The not being able to follow through with things. The possibility of disappointing people because your illness takes over. You never know if you are going to be able to achieve your dreams, to get that degree you want, or score that dream job if you do get the degree. You don't know if a guy will ever want to date you again because you are in a wheelchair and have a feeding tube now. You don't know what kind of health complications you may have. But you have to remember in the back of your mind, that things always happen for a reason, and they work toward good always. So even if you think that things aren't going the way you planned them, they are probably going the way God sees fit for them to be planned. You just need to sit back, relax, listen to direction, not make as many plans that will penalize you if you do not complete them exactly when they are on your calendar. After you do all that, then you need to thank God for the challenges in your life, because you know that by having constant challenges in your life you will grow into an immensely strong, encouraging, and inspiring person. I promise. That's just how it works. Having a chronic illness of any kind, helps you find your purpose fast, in areas that you never thought your purpose would be in. </div>
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During this week think about some of the stuff I mentioned about mitochondrial disease. Visit the <a href="http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7929671/k.BDF0/Home.htm">/United Mitochondrial Disease Foundation</a> website or <a href="http://www.mitoaction.org/">Mito Action's</a> website to learn more about mito as well. There are so many people affected by mito, and it's a nasty disease. Once you know you have it picks you up, turns you upside down, and shakes you all around trying to see if you can handle it. All of us with mito though (and my other chronic and invisible illness friends) are warriors. We fight the battle hard. We do not let the disease win, ever, even if we are losing our earthly battle. We always come up on top. Everyone knows us mito warriors are strong and courageous. But all of us also know it just took one word to change our lives forever. The word mito changed my life forever. I'm trying really, really hard to cope with the negative changes and throw some positive in there and help others with mito know that they can make a difference, they can accomplish their dreams. Yes mito changed my life forever, but that's not necessarily a bad thing. Because the other one word that I rely on the most in my life is hope. And we always win when we have hope!<br />
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-48707918845320275592014-09-14T18:01:00.000-04:002014-09-14T18:01:14.783-04:002014 Edition of 30 Things About My Invisible Illness You May Not Konw<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: inherit;">Every year during Invisible Illness Awareness Week, the 30 things you may not know about my invisible illness meme is posted to have people respond to it. This is the 3rd or 4th year I have participated. It's always interesting to look back at them and compare. So here are my current 30 things you may not know about my invisible illness.</span><br />
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<span style="background-color: white; color: #3f3f3f; font-family: inherit;"><span style="font-size: small;"><span style="line-height: 26px;"><b>1. The illness(es) I live with is (are) & 2. I was diagnosed with it (them) in the year(s): </b>Mitral Valve Prolapse (from birth), Heart Murmur (from birth), endometriosis (age 16), PCOS (age 16), ulcerative colitis (age 24), celiac disease (age 24), fibromyalgia (age 25), dysuatonomia-pure autonomic failure (1st suspected diagnosis was age 25 of POTS--postural orthostatic tachycardia syndrome and NCS--neurocardiogenic syncope, confirmed diagnosis of PAF came at age 27), ehlers danlos syndrome (age 28), gastroparesis (age 28), feeding dysfunction (age 28), intestinal dismotility (age 28), unspecified neuromuscular disorder (age 28), mitochondrial disease--positive muscle biopsy for complex I, III, and IV deficiencies along with an inability for my cells to turn carbon dioxide into oxygen (age 28), colonic inertia (age 28), and anxiety/sensory issues due to multiple chronic </span></span><span style="line-height: 26px;">illnesses</span><span style="font-size: small;"><span style="line-height: 26px;">--especially ones that wreak havoc on the sympathetic and parasympathetic nervous system so it heightens my nervous system and therefore causes me more intense levels of anxiety-- (age 28)</span></span></span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>3. But I had symptoms since:</b>Forever, from one disease or another. The more serious ones like dysautonomia and mito, I started noticing mild symptoms at around 16 (well mito earlier than that actually now that we know what it is and I can look back and notice it, but dysautonomia around 16), and started with the more moderate symptoms at the age of 24/25. I have had extreme debilitating symptoms since I was about the age of 27.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>4. The biggest adjustment I’ve had to make is:</b>not being able to do things whenever I want to, having to schedule my life for lots of breaks, and realizing that sometimes I may have to cancel my plans at the last minute</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit;"><span style="font-size: small;"><span style="line-height: 26px;"><b>5. Most people assume:</b> That I </span></span><span style="line-height: 26px;">over exaggerate</span><span style="font-size: small;"><span style="line-height: 26px;"> how sick I am because I don't look sick and I do so much, there is no way I could do so much school/advocacy wise plus be as sick as I say I am. No one understands my sense of determination.</span></span></span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>6. The hardest part about mornings are:</b>Waking up if I am having a morning where I just can't get up and out of bed. Or getting everything ready to go to school if I do get out of bed. Packing my feeding backpack with my pump and bags, the doses of meds that I will need while I am out, flushing syringes, my school books, laptop, Ipad, pens, chapstick, wallet, etc. stuff for my bookbag. And taking all my meds and getting my dog out and getting me dressed to leave on time. It takes me between 1.5 and 2 hours to get ready every single morning.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>7. My favorite medical TV show is:</b> Grey's Anatomy, duh! And House when it's on reruns</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>8. A gadget I couldn’t live without is:</b>my IPad/Iphone. It's got so many apps to help me out with life, boredom with games, relevant apps for dietetics school, tv apps, school office like apps, email, messenger, and my portal to keeping in touch with all my chronically ill friends.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>9. The hardest part about nights are:</b> staying asleep long enough to get my last dose of meds in, or falling asleep and staying asleep if I'm having an insomnia night.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>10. Each day I take 26 medications & vitamins. </b>(No comments, please)</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>11. Regarding alternative treatments </b>I: have tried them all. I loved acupuncture, but she refused to see me after I got my feeding tube, I still do chiropractic and massage therapy, I also do physical therapy. I had tried diet therapy before I was on my tube, but can't do that now.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>12. If I had to choose between an invisible illness or visible I would choose: </b>I've kind of got both going on right now since I have a feeding tube and use a wheelchair. The visible part makes parking in the handicap spaces easier, but the invisible illness part is easier to hide if you know someone is judgmental of you. </span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>13. Regarding working and career:</b> I was a special ed teacher for middle schoolers with autism and I loved it and I miss it. I am in school to become a registered dietitian currently. But I am also on full and permanent disability. With my disabilities I know I will never be able to work full time. But I do want to work part time up to the amount I am allowed to and still keep my disability because I really love dietetics. </span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>14. People would be surprised to know:</b> that sometimes I really am scared of what my life has in store for me...I'm not always positive all the time.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>15. The hardest thing to accept about my new reality has been: </b>the isolation, the temptation of food, and the laying in bed all the time because that is all I feel like doing.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>16. Something I never thought I could do with my illness that I did was:</b>go hiking on walking trails with my wheelchair for several miles</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>17. The commercials about my illness: </b>There really aren't any, except for fibro. And those are lyrica commercials and they make me laugh because lyrica does not make me walk down the beach holding hands with someone all pain free...it just doesn't.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>18. Something I really miss doing since I was diagnosed is: </b>running</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>19. It was really hard to have to give up:</b> eating real food as my primary source of nutrition</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;">20. A new hobby I have taken up since my diagnosis is:blogging and sewing </span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>21. If I could have one day of feeling normal again </b>I would:go for a run, eat whatever i wanted, go camping, and walk through the mall without the fear of passing out or being in pain</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>22. My illness has taught me: </b>that there is beauty in the small things in life and we should never take for granted one single day we have here on earth, because we are never guaranteed another one and far too many people lose the battle far too early.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>23. Want to know a secret? One thing people say that gets under my skin is</b>: 'Get well soon.' I have chronic illnesses. I may have less symptom free days...but I'm not going to get well...or be healed.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit;"><span style="font-size: small;"><span style="line-height: 26px;"><b>24. But I love it when people:</b> ask me questions about my disease and seem </span></span><span style="line-height: 26px;">genuinely</span><span style="font-size: small;"><span style="line-height: 26px;"> interested in learning more to understand where I am coming from. </span></span></span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>25. My favorite motto, scripture, quote that gets me through tough times is: </b>"All I need today is a little bit of coffee and a whole lot of Jesus."</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>26. When someone is diagnosed I’d like to tell them:</b>Don't get discouraged, do research, understand your illness so that you can advocate for yourself, never give up. Also, never spend a day where you do not get out of bed at all because the day you don't get out of bed at all is the day you stay in bed forever. </span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>27. Something that has surprised me about living with an illness is: </b>how much support, love, encouragement, and inspiration you get from the awesome people you meet in the support groups of those who have the same illnesses as you.</span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>28. The nicest thing someone did for me when I wasn’t feeling well was:</b> went to the store and bought me some ginger ale, then went to my favorite coffee shop and bought my favorite coffee drink and came over to give both to me and told me i could drink the ginger ale after I had my coffee to calm my stomach down from the nausea the coffee would probably cause...and then stayed and chatted for a bit.</span><br />
<span style="font-family: inherit;"><b><span style="background-color: white; color: #3f3f3f; line-height: 26px;">29. I’m involved with </span><a href="http://invisibleillnessweek.com/" style="-webkit-transition: all 0.1s ease-in-out; background-color: white; box-sizing: border-box; color: #408633; line-height: 26px; text-decoration: none; transition: all 0.1s ease-in-out;" title="Invisible Illness Week">Invisible Illness Week</a></b><span style="background-color: white; color: #3f3f3f; line-height: 26px;"><b> because:</b> I think it is super important that awareness be put out there about these chronic, invisible, orphan diseases so that more people are aware of them, know how to act when they meet people with them, and are more willing to donate research money to their research funds.</span></span><br />
<span style="background-color: white; color: #3f3f3f; font-family: inherit; line-height: 26px;"><b>30. The fact that you read this list makes me feel:</b> loved :) <3 font=""></3></span></div>
Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com1tag:blogger.com,1999:blog-170807854514947077.post-44492636619938223862014-09-13T22:52:00.002-04:002014-09-13T22:52:26.606-04:00Advanced Chronic Illness Seminar: Syllabus, Topics, and Terms<div dir="ltr" style="text-align: left;" trbidi="on">
Just as a little joke/play on words, I thought I would do an academically themed blog post of everything you have to know and understand if you are diagnosed with one, a couple, or several chronic illnesses since school just started back for me on June 20th!.<br />
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I have made it a full 3.5 weeks of school without being absent, I was tardy once and it severely upset me more than the teacher but it was because the neurological portion of my diseases made it so I could not find my keys and I was late to a hospital orientation. But I've made it to 2.5 whole weeks of school without being absent...did you hear that people? After 331 days of bed rest, I am really doing this. I am throwing my list of 17 chronic, congenital, genetic, debilitating disabilities out the window and I'm turning a new leaf and going back to school, carefree, and the living is easy and I don't have to worry about being sick anymore...because I'm all better..because I'm back in school.<br />
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Wait, what?<br />
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Can I really do that?<br />
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Can I really just wake up one day and decide that the chronic illness life isn't for me anymore and I want to have a different life, a different story, a different career, a different schedule. Does it work like that?<br />
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Last time I checked the definition of CHRONIC ILLNESS...that would be a big HELL NO! The definition of chronic illness itself is an illness or disease lasting 3 months or more, by the US National Center for Health Statistics. Chronic illnesses generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.<br />
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So if you want a life parallel to the life of chronic illness you needed to know and work and understand how to make the two lives work TOGETHER. A job that is seemingly impossible most days. Because most days...I can't even make my basic life of wake up, take a shower, get dressed, do something productive, work with my 17 chronic, congenital,<br />
debilitating disabilities, let alone add anything else.<br />
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The hardest part about living a "parallel life" in addition to living your chronic illness life, is that if you try to live a parallel life you are going to run into SO many people that just SO do not understand at all. And it's majorly frustrating. This week has been the epitome of that in so many ways. I do not care how educated you are and how much you think you are aware of different cultures and people and minorities and situations. Or if you even hold a degree in a health care profession. That does not mean that you understand what it's like to live and function and achieve when you live a life of chronic illnesses. </div>
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You are not aware that when you are showing up to class that you are showing up, every day, on time, and not complaining with a smile on your face and a good attitude. This is despite the fact that your leg muscles may hurt because of putting pressure on them and standing on them for a long time when you have significant muscle damage. You feel as if you are about to pass out because you aren't getting enough energy intake fast enough through your formula or you are standing up too long so your blood pressure dropped too much. Or it's difficult to lift anything or carry your feeding pump backpack because your back hurts so bad. Or you feel so incredibly exhausted you just feel like there is no way you can get out of bed at all...but you know you have to...because you are only allowed to miss 2 days the whole semester and it's still the firs month. Or the fact that it took you 1.5 hours just to pull and take your meds and pack your feeding backpack and make sure you have everything with you that you could possibly need in case of emergency for the day like towels, extra extensions, meds, alcohol swabs, etc. Or you can't even really see because your blurry vision is kicking in. Or you are so nauseous you can barely think about anything else. Your life is not just waking up, rolling out of bed, putting on some clothes, and showing up to class like so many others. You have to fight just to make it out of the door every morning. And I mean fight hard.</div>
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In addition, to those around you in the non-chronic illness world you have to deal with the mental and emotional thoughts that you are going through at the same time. You have to come to terms with yourself of why this is happening to you? How much in your life will change? You feel like no one understands you, like no one could possibly know how difficult it is just to do simple tasks.You probably throw around in your head ideas like you can't handle all this,what happens if your family is all gone--then who will take care of you, about how scared you are, and on and on. For me, usually at least, the emotional side of chronic illness is almost way worse than the physical side.</div>
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Now to get on to some of the parts of what are required to actually know how to live and thrive with chronic illness. First, you've got to know what you need to carry with you at all times in case of emergencies and keep supplies in mind that need to be ordered and kept up on for maintenance. For dysautonomia, you've always got to have water, salt, compression stockings, fold up chairs, and those towels that you can soak in water to make them cool in the summer with you so you don't pass out. For Ehlers-Danlos, you've always got to have braces for every part of your body available in case you dislocate something. For celiac, you need to always know where the nearest gluten free snacks are. For ulcerative colitis, you need to know where the closest bathrooms are. For mito, you've gotta have your wheelchair, access to some muscle relaxers, and have stuff in your car to set up for a quick nap. For gastroparesis/tube feeding, you've gotta have your feeding backpack all loaded with formula and water/gatorade, syringes for meds, meds, flushing syringes, towels, extensions, tubie pads, and changes of clothes. You always have to plan ahead for what you might need. And even over plan and have more stuff than you will ever need. But you'll get used to it once you are sick for a while. </div>
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The most important thing about getting a chronic illness diagnosis is that in some ways it's a relief because you are finally finding out what has been debilitating you for so many years and causing you so much grief. But at the same time you realize that the rest of your life is going to be ruled by your illness, or illnesses, and instead of buying cruises and dream houses and having kids and getting married, your life looks completely different. Now, instead, you are buying blood pressure machines, supplements, syringes, gauze, tape, saline, creams to prevent itching and fungal growth, gas to go to and from appointments, more supplements, prescriptions, braces, wheelchair parts, lights for your IV pole, and on and on. </div>
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You will be spending the rest of your life waiting on something. Going somewhere. Trying to figure out the next step. You will go to so many different doctors and therapies and treatments. You will have regular appointments with PCP's (primary care physicians), cardiologists, gastroenterologists, endocrinologists, neurologists, rheumatologists, geneticists and metabolic doctors, orthopedists, electrophysiologists, physical therapists, occupational therapists, speech therapists, chriopractors, massage therapists, accupuncturists.You will learn so much medical terminology and information you could earn a medical degree. I guarantee that you will know more about your medical condition than your doctors will, especially if they are just pretend specialists, or specialists that aren't really all that specialized. You will have every test there ever was known to man and more. You'll get blood drawn all the time, CBC's, CMP's, UA's, pregnancy tests like all the time just because you are of child bearing age but seriously who is sleeping with this mess and how would this mess of a person find the time or energy to sleep with anyone anyway--even if she wasn't infertile already, x-rays of everything multiple times, CT Scans, MRI's, skin biopsies, stomach muscle biopsies, small intestine biopsies, thigh muscle biopsies, organic acid testing, colonoscopies, esophageal studies, swallow studies, stress tests, EKG's, echos, EEG's, sleep studies, and on and on and on. And you will never get all the answers you want. But you will still want to keep trying and waiting. Your schedule will be insane. </div>
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I think the most important thing for those without chronic/invisible illness to realize is that you are lucky, for right now. But you never know when it will be you. It comes without warning and takes over your life and you have no control over it. And you can't give it back. You've just got to learn how to deal with it. I know I've told this story before, but when I was taking adaptive PE in undergrad my professor was describing the difference between those who had disabilities versus people who didn't and the class called them typical or normal people. She said that you can never say someone is typical or normal. You should always describe someone without a disability as temporarily able bodied because you never know when they will be disabled and not normal or typical anymore. Cocky little me, president and captain of everything, straight A's, 3 jobs, running all the time, involved in my church, 21 year old self was saying in my head "nah, that will never be me, I'm way too healthy" and I was on permanent disability 5 years later. Yeah, it totally happened to me. Fast. My whole life was turned upside down and inside out. And I am learning to thrive with it, and use my life now for education, awareness, advocacy, and testimony. But boy was I wrong when I said it couldn't happen to me. It can happen to anyone. At any time. So be on your toes. Enjoy the ride while you can. And treasure every moment you have on this earth as if it is your last. Because it may very well be. We never know what will happen. If chronic illness does happen to you though, learn to be grateful for the little things, get to know some others with chronic illness, I guarantee your life will be better because of it. Those of us with chronic illnesses are pretty kick ass, if I do say so myself! </div>
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I hope you enjoyed your crash course in chronic illness living. I also hope you never have to use it! :)</div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-63201069201954954172014-08-16T00:06:00.003-04:002014-08-16T00:06:49.202-04:00Encouraging Others, Encourages Ourselves<div dir="ltr" style="text-align: left;" trbidi="on">
This has probably been one of the most extremely long, drawn out, stressful, fatiguing, exhausting, emotional, sick feeling, disappointing, and discouraging weeks of my life. I don't know if you can get anymore negative sounding words in there, but there probably are more if I missed some, those can probably be added too<br />
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I had a GI appointment in Indy (2 hours each way) and my mom had to drive me because we didn't know how my eyes would be, how my energy would be, and the systemic staph infection I have had has just been kicking my butt and making my energy way less. We were gone for basically 6 hours for a like 30 minute appointment. We got home and I tried to order my supplies for my feeding tube and was told that I had a HUGE balance on my account and was told I would not be able to get my supplies until I paid off the supplies from last month and pre-paid for this month (keeping in mind this was my 10th month ordering for this comment and had never paid a penny because my insurance--Medicaid from October-April and Medicare and Medicaid since April--covered everything 100%. I asked why I randomly had this ridiculous balance and the lady told me that Medicare was rejecting my supplies now and because Medicare is my primary, Medicaid wasn't paying anything on it anyway. So with the 6 hours travelling, with the infection, after talking to the doctor, and then coming home to find out about my supplies having a balance and not being able to be ordered. Monday night I had a very scary psychotic-like episode that was unexplained. I had a lack of coordination, agitation, slurred speech, confusion, change in speech rhythm and patterns, paranoia, hallucinations, irritability, lack of memory after a certain event, mood change, outbursts of anger, trouble speaking, and unusual behavior. It was definitely scary and lasted for 4-5 hours start to finish.<br />
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Tuesday, I didn't have quite the psychotic episode as the night before, but I was losing chunks of time...and I'm talking big chunks. Like 3-4 hours. It's almost like I had passed out for several hours without realizing it. Wednesday, I went to my saline infusion and my blood pressure was only 86/67 and I felt horrible. Thursday, my mom picked me up to take me to Indy again for pain management, just to get my pain med refill. That trip was about 8 hours and literally all I had to do was show up to get a prescription because they have to be hand written. But it took 2 hours to get there, he was several hours behind, and then the ride home...ugh. I also found out Thursday for some reason the financial aid office hasn't given me any financial aid for this coming up semester or the spring and after I've overcome so much to attempt to go back, if I can't because of a financial aid issue, I'm gonna lose it. Today, I had counseling. Then I had to drive to a town 45 minutes away to go to a new physical therapist because he supposedly had experience in working with those with mitochondrial disease. I make it there, they find out my prescription is expired, but let me go ahead with the evaluation anyway, and then I look up when I was called and the therapist was a therapist that I had already had in town that didn't know how to deal with mito.<br />
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So yes, I've been on the definitely discouraged side of the encouragement scale this week. There have been a lot of heavy blows...and even some that I can't mention on my blog...<br />
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But here is the thing. I love encouraging others and helping them cope with new chronic illness situations when they are in tough situations too! I love being there for them. People messaging me and asking my advice. Just being there for people and letting them vent, cry, complain. (Most of the time, I only enjoy it if they reciprocate the favor sometimes too.) Even when I am discouraged. I get more encouraged by helping other discouraged people become more encouraged. It's like a symbiotic relationship.<br />
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I honestly believe one of the ways to stay encouraged, is to encourage other people. If you are always striving to help others be encouraged, then you are probably going to look at or hear some of the advice and encouragement you are giving to someone else and realize that "Hey, that nugget of encouragement applies to me and my situation as well," and by encouraging others, you are encouraging yourself at the same time. When you are down in the dumps, and just can't get out of the pit, take the time to encourage someone else...because seeing them react to the time that you took to give them a positive thought, a word of affirmation, or a simple smile across the room, and knowing that by whatever small act you just did to that person encouraged them and turned their day around and cheered them up, may be all it takes to get you out of the pit too. </div>
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Living in the chronic illness world, you always get your fair share and exposure to discouragement. Whether it be through your own medical journey, interactions with your medical team, something you just can't get over. Or whether it be from 1 of the hundreds of people that you have formed friendships with in the support groups online and various places. At one point in time there is ALWAYS at least one person and usually a whole lot more than one person that is discouraged. This life is discouraging. There is nothing they can do to make us better, there are people constantly telling you that they know what you should do even though they can't pronounce or spell your disease name, people you've been talking to every day for months and months all the sudden don't post for a couple of days or send you messages for a couple of days and then you find out that's because they have passed away from the exact same thing you have and that one day someone will be waiting on you to message back and they will be finding out it's you that has passed away. There is lots of negativity and discouragement in the chronic illness world. </div>
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But the best part about the chronic illness community is that no matter how bad a day you are having. No matter what is going on. No matter if you agree or disagree with this or that person's political, social, medical view points.The friends that you make in the chronic illness world are friends to the end. They will not judge you. And they will encourage you until they're blue in the face. Even if you are having the most discouraging week there has ever been in your life. Because that is what the chronic illness community does. We support each other, and we encourage each other, and we support each other, and build each other up...when all we feel is down. Because we know that even if we are having a bad week, we can help someone else have a good week with our words of encouragement. It just takes an empathetic "I'm sorry" or a smile. </div>
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If you encourage someone else, you will begin to heal yourself. I so believe that. Encouragement is empowering and it doesn't just affect the person being encouraged. Encouraging words can touch so many people in one fell swoop. The person you are encouraging, yourself, their family and friends, and your family and friends because everyone's attitude will change. This world is so down trodden all the time with so much negativity. Let's just take some time out of our busy lifes where everything is always so critical and cold and take 1 minute to encourage someone who is having a bad day. I guarantee it will not only make the person you are encouraging feel better, but it will make you feel better as well...because our words of encouragement are a gift, and giving equals healing. Who will you encourage today? How do you plan to encourage that person? How do you think that will make you feel? I hope you find it as healing as I have. Because there never can be too much encouragement in the world. </div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-74935752983385215162014-08-09T06:40:00.002-04:002014-08-09T06:40:39.003-04:00Reflecting on my Roller coaster of a Year!<div dir="ltr" style="text-align: left;" trbidi="on">
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Technically, my birthday was yesterday, but people still haven't woken up for today yet, so this blog post can still count as being posted on my birthday, I think.<br />
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I always like to do a blog post on, or near my birthday to reflect on the past year and see what great insights I have had, and what big life decisions I've made and great successes, or great disappointments.<br />
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Basically, this whole year, I learned one really huge lesson with several small lessons kind of branched off from the one big lesson.<br />
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So what is the big lesson you ask? No matter how old you are, what race or ethnicity you are, how much money you have or don't have, how successful you or your parents are in life, your educational level, and on and on chronic illness and possible death from terminal chronic illness is not discriminatory. It can happen to anyone at any time. No one signs up for it. No one definitely signs up for the death sentence part of it. But that does not mean that it doesn't happen to some of the most innocent, cute children, teens, and young adults with their whole lives ahead of themselves. Also it stinks for adults too, but it just seems a little less fair to me when it's the kiddos. Chronic illness sucks!<br />
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We have to realize that no matter how much we think that we still have 60+ years here on this Earth, the truth is that none of us really know. Even if we don't have chronic illnesses that may be terminal, we could still die at an early age due to a car accident or something like that. It doesn't just have to be from a chronic illness. </div>
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However, once we found out what kinds of mitochondrial disease I had, we did get pretty nervous about me living a really long term average life span. Once you are given a diagnosis like that, you just have to start doing things that you want to do, because you never know how much more time you are going to have. Well, no one does really. When we know we may not have that many more birthdays, we start living life to the fullest, and stop making plans to please others, but make plans to please ourselves.</div>
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Eventually, when you get older and more mature, and the more life experiences you have had, especially if those life experiences are in dealing with chronic health conditions and having watched from a very young age very young friends pass away. We have to remember to start living each day to the fullest....even if that looks completely different for each of us. We have to live life now. We can't wait...because if we wait too long, it might be too long. We can't give up on our dreams. If we have things we want to do, the time we need to do them is now. </div>
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Even though it may seem like if you look at your life day by day nothing really seems to change. Everything moves so slow. Changes happen, but they just kind of mutate over time, slowly, forming new parts of you. Not all at once, hitting you like a brick wall (although, at some points this year, that is exactly how I felt.) But my point is at my last birthday, I never even dreamed of getting a permanent feeding tube a month and a half later, having to drop out of my masters program for a year to be on bedrest, getting diagnosed with mitochondrial disease which is most likely going to shorten my lifespan significantly, would actually get work done on my thesis, and decide to go back to work...but all that (and more happened). </div>
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Change happens, it's how you respond to that change that makes you who you are. I know that I have lost a lot this year. But I have gained a lot too. Through both my feeding tube groups and mito groups and some other groups as well, I have met some of my best, most precious friends that I get to love on and encourage. Even though we are all there for sucky reasons. Good things can come out of bad circumstances. Trust me on this. I am an expert!!</div>
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We need to stop victimizing ourselves and playing the woe is me card. Another thing I learned this year is that no one likes someone who complains to someone all the time. Especially me, fi you can't find anything happy to say in your conversation, please don't talk to me. There is always something good in life. Your life cannot be all miserable. There is just no frigging way possible. So if you are only gonna message me when you want to complain...you can bet I won't be answering your messages, because for my healing, I need positivity and perseverance. Not negative people dragging me down all the time.</div>
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The last thing I learned is to always live like you're dying. Live like this will be the your last day on Earth. And make sure that you never stop trying, never give up, fight the good fight, don't give up on your battle. Because all we really want for our birthdays, really is another birthday, right? Overall, I think I learned some overall good lessons this past year. At least I have a lot to reflect on for this upcoming year. I wonder what I will learn next year?</div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-31510019617556791152014-08-03T15:38:00.002-04:002014-08-03T15:38:53.323-04:00Wards Are Power!<div dir="ltr" style="text-align: left;" trbidi="on">
I'm participating in a encouraging card exchange group on Facebook right now called #fmfpartysnailmail. You should Google it, or search for it on Facebook because it is a very interesting, and fun, and challenging group/activity/whatever you wanna call it and I highly recommend it if she offers the program again. The person who operates this project, group page, etc. is organizing a link up blog where you can link one of your posts to that person's blog of that post to get more readership, and plus you get to read other cool people's blogs about other people's journeys as well. The link-up going on right now is to challenging you to write anything you want to about the written word and then link it up to this awesome blog <a href="http://onegirl-itjusttakesone.blogspot.com/2014/07/written-word-giveaway.html">It Just Takes One</a><br />
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Personally, for me, the first thing that pops into my head when I see the words "written word" paired together, my brain always goes straight to the Bible, which is also known to some as the written word of God. And my brain fills up with Bible verses like the following:<br />
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"The grass withers, the flowers fade, but the Word of tour God will stand forever"<br />Isaiah 40:8, ESV</blockquote>
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"For the Word of God is living and active, sharper than any two-edged sword, piercing to the division of soul and of spirit, of joints and of marrow, and discerning the thoughts and the intentions of the heart."<br />Hebrews 4:12, ESV</blockquote>
Then I kind of thought about my blog. Like that is a form of written word. I am writing all these words in hopes that someone will read them, someone will feel from them, someone will understand from them, someone will feel better about themselves because of the words that I have written. I believe it is my mission to take my words and help people understand things in a better way. Heck, I want someone to read my blog posts and stories and be able to identify with me and tell me I am not alone. We all need to know that every once in a while. And I use written words to do that. My blog is my purest and simplest and most awesome form of my written words.<br />
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But then I thought about the literal meaning of "written words' as words, that are handwritten. And that struck a chord with me. I love, love, love getting cards in the mail, cards when I'm in the hospital, cards on a holiday, cards on a Tuesday, I love getting cards! And I try to stay caught up and send other people cards too. </div>
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<br />There is just something so different, more personal, more intimate, more of a feeling like the person that wrote you the card is sitting on the sofa right next to you if you get a handwritten card. For some reason, seeing each different person's own way of writing, the curves they make, the way each letter is formed and spaced, the curls and curves of the letters, it tells of each person's personality so well I believe. </div>
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Especially, in the society that we live in now. We live in a society where our phones, laptops, Ipads, and everything else are ALWAYS logged into Facebook, Twitter, Instagram, Facebook Messenger, Pinterest, LinkedIn, and on and on. Or we can text 24 hours a day, call people, leave voicemails, Skype, and FaceTime. We are a digital society. We are a fast society. We are a right now society. We do not slow down at all. Even if we ask somebody how they are doing. We don't really care for the true answer, we just wait long enough for the person we asked to say "ok" or "good" before we scurry away. We send people cute pictures or half caring questions or ((hugs)) or little emoticon hearts, or happy faces, or sad faces, or conflicted faces to let you know that we at least read your status update, but we don't actually want to give you any real encouragement, because that would take time, so here's this red heart, smiley face, and some ((hugs)) which will of course make it all better. </div>
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This is not communicating, people. This is not how you build relationships. Keep relationships. Let people know you truly care. I am a firm believer that sending a hand written card than any one line on a person's wall that says "just stopping by to check in", or a private message, or a card in my email inbox to look at that is animated. Not that those are not wonderful and appreciated things, but, I love to get cards too. :)</div>
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I love to display the cards in my room, I have 2 special places I display cards right now: </div>
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This is my healing corner of my bed bookshelf space and I rotate in and out, cards and notes that I've gotten from people when I was in the hospital, or when I had a procedure, or when I was just not feeling good at home. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLno268s9I7r4twTyKoQANtwoFdVcOZf6l_9bypftzPMwmuyirj-_1Y5Ky7RG4Cb_nDYOMvBz78OHZBIeHGYulT1w7zIGpRLTQBJkS_CfuomXqcSmmPegjx5we4LI_1SlIJhPrJmy82A/s1600/photo+(97).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLno268s9I7r4twTyKoQANtwoFdVcOZf6l_9bypftzPMwmuyirj-_1Y5Ky7RG4Cb_nDYOMvBz78OHZBIeHGYulT1w7zIGpRLTQBJkS_CfuomXqcSmmPegjx5we4LI_1SlIJhPrJmy82A/s1600/photo+(97).JPG" height="320" width="240" /></a></div>
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This is on the wall of the long hallway that goes from my door into my bedroom. It's a card rack thing. I keep cards on it. Some stay forever. Some rotate in and out. It depends what their significance is. It depends what the emotion is behind it. But I can tell you right now, that card on orange (turning drab off orange/brown color) that says "Get well soon, Ms. Fulsom" and has a big heart on the inside of it, that card is staying visible to me for the rest of my life. Because I taught that 13 year old boy with moderate-severe autism that can barely even talk, how to write, and he made me a card when I was in the hospital one time. How sweet is that? I love and miss that kid, even though he was a handful.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2WAVmAvGCAdV-DmxELSB-EpihZoyLq81lHeHHt83hiVa9wIv2oA0T5ZnBp4g-QUofONDnFtLqisMpCA6b9SfINydyLBdmUJvglppd4csWd7wE_sDKBgsGjiDkgSh1NRH1Q-zxZ13zJQ/s1600/photo+(98).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2WAVmAvGCAdV-DmxELSB-EpihZoyLq81lHeHHt83hiVa9wIv2oA0T5ZnBp4g-QUofONDnFtLqisMpCA6b9SfINydyLBdmUJvglppd4csWd7wE_sDKBgsGjiDkgSh1NRH1Q-zxZ13zJQ/s1600/photo+(98).JPG" height="320" width="240" /></a></div>
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Another thing, you should know about me, and you can probably kind of sort of already tell. I keep every card that is ever given me (for about the past 3-5 years or so, that's the time of my life where I truly started learning the value of someone taking the time and picking out the perfect card for you, writing a little something in it and mailing it to you. It's not that easy these days, takes way longer than tagging you in a post of an inspirational quote on Facebook, but much more lovely. </div>
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And when I say I keep every card, let me just show you what I mean. I keep every card! </div>
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These cards birth announcements, congratulations cards, thank you cards, cards for random holidays that you usually wouldn't get cards for like thanksgiving, new years, Easter and things like that, and some handmade and drawn cards made with love that are just encouraging. </div>
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These cards are handmade cards from the girls of the youth group that I helped chaperon trips for at my church when I was in the hospital for the 13 day time trying really hard not to die because of my potassium, get better/don't stay sick cards from people, thinking of you/just a little note cards, Christmas cards, and birthday cards.</div>
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So as you can see, I am a woman of my word. I love receiving handwritten cards. And I will save them. And when I get them out to right blog posts like this one, I will open each one up and read the messages and have a flood of emotions fall over me because I will feel like the people that wrote these cards to me are sitting right next to me because of their words, feelings and emotions being conveyed through the card and then I realize that they are no where near me. And I get sad. </div>
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There is only one logical solution to this, it is to: </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmO4GgY9Vf1evQIqkrfvgv7wzs3E7Kg_OnR1GNF18uyCUWGzbPyP5YxXZX3yy7gtNMZCoBhW3XT0WPTGGzQYzKYyxdO0-YfLFnSmug0QkIrlM0QRdWOm214_cGTIBAx1dMFM8hgbty5w/s1600/words+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmO4GgY9Vf1evQIqkrfvgv7wzs3E7Kg_OnR1GNF18uyCUWGzbPyP5YxXZX3yy7gtNMZCoBhW3XT0WPTGGzQYzKYyxdO0-YfLFnSmug0QkIrlM0QRdWOm214_cGTIBAx1dMFM8hgbty5w/s1600/words+2.jpg" height="320" width="212" /></a></div>
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duh, easy as pie. Just take out a pen and some pretty little stationary paper and every time you wanna comment on somebodies status right it out on a piece of paper and send them a PM for their mailing address and send them a handwritten letter, or a card, or something, that shows that you cared enough to stop your would for 5 minutes to think of them enough to send them a handwritten card. They will be thrilled, I guarantee it. I mean who seriously wants to go out to their mailbox and only find junk mail and bills. Why don't you make sure at least one of your friends a week gets a handwritten card to break up the monotony of their mailbox boredom?</div>
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Or you could do like I did and join the #fmfpartysnailmail if she does it again, or just send letters to people when you can tell they are feeling down, or if you wanna step way out of the box do what I do every year on my birthday. Every year, I write the number of handwritten cards to the number of friends of the age I am turning that year. Friends who have supported me through the year, who have helped make me live a more easy life, who have helped me make it to this birthday alive and happy. So this year I am sending out 29 handwritten cards. So this week I am sending out 30 handwritten cards, last week I sent out 4 handwritten cards. There is just something about handwriting a card to someone that makes me feel like I made you feel better about yourself just for a minute. And that makes me feel better too. </div>
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So I've got my cards out, and I'm ready to make your week special, maybe, if you get a card from me, for sure!!! If there is one thing I hope you have learned, it is that words are powerful. They can build you up or tear you down. They can make you happy or sad. Words can do a lot of things. We should use these powerful words to empower our friends. Come on everybody pick up a card and join in some word writing, too! </div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com5tag:blogger.com,1999:blog-170807854514947077.post-63692373705002982972014-07-30T00:09:00.000-04:002014-07-30T00:09:06.758-04:00Why Didn't I Think of That? Oh Wait, I Did! <div dir="ltr" style="text-align: left;" trbidi="on">
This will not be one of my inspirational, make the world a better place one word at a time, for all those with chronic illnesses. It's going to be more of a venting type of blog.<br />
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I'm in 30 different chronic illness support groups for all my different chronic illnesses. I also have my Facebook page (also named very similarly as this blog, <a href="https://www.facebook.com/pages/Healing-Hopefully-Megans-Chronic-Illness-Journey/1428729344026491?ref=hl&ref_type=bookmark">Healing Hopefully: Megan's Chronic Illness Journey</a>, about my personal journey. I also have people in my life that I have face to face relationships with (or did until I moved away from them but we still stay in regular contact with each other, so they are very up to date on what is going on in my life). These people could be anywhere from friends, to ex-employers, to church members, to professors, to preceptors, to doctors, and on and on and on. I know a lot of my chronic illness warrior friends from the multiple support groups I am in, staying caught up as best I can while being extremely sick myself this summer and having to work on my thesis this summer as well. Basically, all I'm doing this summer is working on my thesis, sleeping, and going to appointments. <br />
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The overarching theme and pet peeve of people in every single support group that I am in for every single health condition I have no matter how long they've been on their chronic illness journey, or if they are brand new to the chronic illness world...The number one thing that is our biggest pet peeve is getting unsolicited advice from friends, family members, random people walking down the street, other doctors with different specialties that don't know about the other diseases you have and all the ins and outs of that particular disease, teachers, colleagues, and even other people with the same chronic illness that you have. This is also can apply to all you non-chronic illness people out there too. Perhaps for their parenting skills, or what job they should accept, or what decision they make for their family or their job or their education. About their spiritual and social groups. (However, this blog will obviously be leaning more close to the chronic illness end of the spectrum, since that is what this blog is about). Everyone get's unconsolidated advice, and everyone hates it!<br />
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Unsolicited advice is horrible and just makes people so incredibly upset because we should all be allowed to make our own decisions, especially if we are adults, maybe kids at certain ages too depending on the gravity of the choice they would be making. And so many times the unsolicited advice offered is by someone that has no idea about what they are offering their advice to you about. For example, someone who doesn't have children offering parenting advice to a mom. Or someone who doesn't have any sort of chronic illness, or at least doesn't have the one that is causing you issues right now and offers advice to make you feel better. It just doesn't work that way. Why would you offer advice to someone if you don't even have any experience with the issue at hand yourself. This is a little bit different if the question being asked could pertain to your career or degree and you may not have had personal experience with it, but you are educated about the subject. For example, I can offer multiple choices for what I would do for my feeding tube based on my personal and professional experience, but the people reading it should definitely take it to their medical teams, because I am not the health professional for any one in the groups.<br />
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This brings me to my next point. Advice can be welcome and appreciated when it is asked for. I will only comment advice on posts that specifically ask for advice. My number one pet peeve is when I post a statement on my status on Facebook or my Healing Hopefully page and I start getting advice and more advice and still more advice. I never asked for advice. I posted a statement, with a period at the end, not a question mark. There are times when I do ask for advice, But if I'm not asking for advice, please let me just vent through my status and take care of myself in the way that I know is correct for me to help me get out of whatever slump I'm in. This especially has happened to me the most with people that have the same chronic illnesses as me. They tell me well we do this, and have you tried that, and on and on. I remind people that I have top notch doctors taking care of me, we have protocols in place, and I'm a highly intelligent person so I don't necessarily need to change things right now. Which basically means, leave me the heck alone people...unless their is a question mark.<br />
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While we are on the subject of doctors taking care of our cases and protocols and making sure that we are being provided with the best possible care, that is the truth. It's not up to you, Suzie, Adam, Jane, or whoever else is on God's green earth that gets to decide how to "fix me". You don't have the right to give me advice on my condition or to tell me of some home remedy that you read about in some random magazine in the checkout line at Kroger that swears this home remedy will cure you of all ailments in the universe. You should not be able to suggest to me what new and different medicine that I should take because it works so well for you, it's just gotta work for me or to tell me to change my dosages of my meds because they work better at a higher or smaller amount. You have absolutely no right whatsoever to discuss my medical bills, that should be NO ONE'S business but mine! And my number one pet peeve, you should not tell me how to alter my diet to make me all better now. First of all, I'm on tube feeding, not much you can change about that. Second, I'm in school to be a dietitian, I'm pretty sure I know how to eat healthy, even better than your comment to me.It is so incredibly painful mentally and physically having to deal with these issues all the time: switching meds, switching diets, trying home remedies, fighting with insurance companies to get bills covered. It's a daily battle. Plus, if there were a home remedy that took away all the symptoms of everyone's chronic illness issues, don't ya think the whole chronic illness community would have jumped on that band wagon long, long ago. Do you really think we want to be laying around all day, unable to do things for ourselves. Ummm...no. We want to be better. If there was a cure, we would have found it by now, because we have researched over and over and over again and tried everything with no luck. </div>
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I hate it when people can't even spell the diseases you have, or text you to see how you spell that one thing that you have with the bendy joints, etc. And then you get emails or messages with all these articles that talk about how to manage your EDS and things like that. Or people think that you are letting your life waste away while you lay in bed all the time and if you just get up and exercise some or move around you will get better and be cured, or if you lose a couple extra pounds. Maybe you shouldn't be on so many medications, I bet the medications are just causing you to have more side effects and making you think you have more diseases than you actually have. Maybe if you changed your diet, did physical therapy, acupuncture, massage, and take some combination of herbs and supplements and do all this every single day or you won't get better. Doctor's think patients using Google is dangerous, I think patients friends using Google is even more dangerous. They find all this information and opinions about something they aren't even educated on and haven't even spoken to a doctor about. When, really, I've got everything under control. I know what I'm doing over here. </div>
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In my opinion, living with a chronic illness and the lifestyle it brings with it, is the worst part. Our country is so judgmental of anything that is different from the way we are "supposed to be living", different from having your dream job, and a husband (or a wife), with a house on a cul-de-sac with 2 stories, 2-3 kids, a couple of dogs and cats for pets and no worries in the world besides buying school supplies...not scheduling 6 doctors appointments a week and things like that.</div>
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No one can accept that those of us who have chronic illnesses, would really rather have the above mentioned character traits instead of living the life of a chronically ill people. Please don't offer your opinion on my lifestyle situation and how I have to make ends meet, when you have no idea how debilitated I actually am. We may "get" to lay in bed all day, but when you're over a year in it gets kind of majorly suckish, I mean even after 2 months I was going batty, we may not have to do certain things because of our disability like vacuuming or cooking, etc., but the disability is worse, trust me. Often we can never get anywhere outside of our appointments and obligations and then it's immediately back to bed. Also, a lot of people think that is unfair because we get "paid" to do no work at all if we are on disability. But most of us would rather be back at work, working full time, fulfilling the purpose of our lives. Plus, I don't know if you've ever had or seen a disability check, but there ain't no living on it. That's why I can't move out of mom's house. It would be impossible. I would almost kill to be able to go back to work again. Tomorrow. If I could. Long, long hours. Having the time of my life. Making a difference in the world. And making a decent wage. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii7zuDRjGrqxK_xdjkoKAFGB0Io4CvJNMRuimDCH0HSbZEgsZ1iQUmgo5KGBPLt0pOA-o6YRpxQSwD6zp7M3WLku8lhocfy7ar7-pqzu-6dcJyBEsFGgArMSYGBiB4iQaabwcr_79f4w/s1600/advice+6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii7zuDRjGrqxK_xdjkoKAFGB0Io4CvJNMRuimDCH0HSbZEgsZ1iQUmgo5KGBPLt0pOA-o6YRpxQSwD6zp7M3WLku8lhocfy7ar7-pqzu-6dcJyBEsFGgArMSYGBiB4iQaabwcr_79f4w/s1600/advice+6.jpg" height="174" width="320" /></a></div>
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So if after reading all this you still want to pass judgement on people with chronic illnesses and think they are over exaggerating and attention seeking and not really as sick as they say they are and want to give them unsolicited advice, boy have I got a solution for you.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwsjaSpcECdLiPD02RmOXMyFnTXvkX3hrT0V8GTFPhsx2O50XsNa3-ypzFGpS6Ot6MknNv3HIK9hr3XFx0eu2-2FxPsdGPs-iz0fG4Rcj1GiJ5XoJnnwAXyx1v2llXQFpwd16xnDtqPg/s1600/advice.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwsjaSpcECdLiPD02RmOXMyFnTXvkX3hrT0V8GTFPhsx2O50XsNa3-ypzFGpS6Ot6MknNv3HIK9hr3XFx0eu2-2FxPsdGPs-iz0fG4Rcj1GiJ5XoJnnwAXyx1v2llXQFpwd16xnDtqPg/s1600/advice.jpg" height="320" width="247" /></a></div>
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If after 24 hours of feeling exactly how I feel every day, being hooked up to a feeding tube, having a port accessed, all my symptoms going on in you for the entire 24 hours you still have an opinion that you want to tell me of how to live MY life with MY chronic illnesses then you're not so bright. Because I bet during those 24 hours you will do what we do our whole lives which is look for information all over the place about how to make our suffering just a little bit better. </div>
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And when you start looking for information to make you feel better during the 24 hours, you will realize there is no cure or treatment or home remedy or complementary alternative medicine type that will make it all go away. </div>
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And then you will realize why we get so mad when we get offered unsolicited advice on our conditions that we know more about than most of our doctors even do. If there is any smidgen of information out there that claims that this treatment may have provided some sort of relief somewhere down the line, we've tried it, and we've tried it again. We have thought of every possible solution on the face of the planet. So when you offer us advice...odds are we've tried it and thrown it out the window hard and fast, or tried it and are currently using it. So anything you can through our way has already been experimented with, and I already thought about it. </div>
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So if there is a period after my ranting on Facebook or twitter or whatever, do not give me advice, I did not ask for it. If there is a question mark, respond with your own risk. :) </div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com2tag:blogger.com,1999:blog-170807854514947077.post-30460492474030084252014-07-22T23:12:00.001-04:002014-07-23T04:50:06.066-04:00I am Beautifully Broken<div dir="ltr" style="text-align: left;" trbidi="on">
I'm sure if you are a woman/girl, and have a Facebook account, you have seen one of the things going around that are like chain posts, but ask you to add something to do for them, share your addition, and publish your response with the original post, and tag a certain number of people (by name) to do it next.<br />
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The chain post I am thinking about right now is this one:<br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #37404e; line-height: 20px;">"I was nominated again for the beautiful woman challenge by ____________.</span><span style="background-color: white; color: #37404e; line-height: 20px;"> Here are 5 more pictures that I feel beautiful in for different reasons! If I tag you, please find 5 pictures that you feel beautiful in, share them if you would like and tag 5 of your friends to do likewise."</span></span></blockquote>
I got nominated to participate in this chain by several people...and I just kept skipping it over.Why you ask?<br />
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I know I can be beautiful. I know that I am fearfully, and wonderfully made...and your works are wonderful. I know that you knit me together in my mother's womb. (Psalm 139:13-14) I know that I have held on tight to these 2 verses throughout the past 12 years of chronic, often unidentified, rare, incurable, possibly terminal diseases. Logically, I know this...and if I am fearfully and wonderfully made by God, then of course I am beautiful because God doesn't make anyone ugly, in his eyes.<br />
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So then I thought did like any Facebook obsessed, want to be compliant, and on the "in crowd" of Facebook; I dug through all my pictures past and present and completed the assignment of finding 5 pictures that I thought made me "beautiful". So here is what I came up with for my "beautiful pictures":<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUzL9MBp6iMUPFC_0RDMdljXec5kBBiTVQpkLBG9rjXUrgXuhNqb8GFXmlTiY21MRioYXZh8V7MOST6jCrxD542tf9FUupJZY1Mj62Lpx0GuTx2EKX_hzW-3IU3NXyxR9G7Bhze7U_eQ/s1600/photo+%252888%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUzL9MBp6iMUPFC_0RDMdljXec5kBBiTVQpkLBG9rjXUrgXuhNqb8GFXmlTiY21MRioYXZh8V7MOST6jCrxD542tf9FUupJZY1Mj62Lpx0GuTx2EKX_hzW-3IU3NXyxR9G7Bhze7U_eQ/s1600/photo+%252888%2529.JPG" height="320" width="320" /></a></div>
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Those pictures are of me with my newly done hair and highlights with my perfectly colored face and eyes against them, sitting on a pier in the Bahamas, standing with a paper flower I found on the ground right after undergraduate graduation in front of the science building, my jumping for joy at the beach in Charleston, and me all dressed up for family pictures. </div>
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BUT...</div>
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While looking at these pictures I realized they are not me. These are beautiful pictures, but they are not who I am anymore. What I am is a 28 year old, female, with 12 chronic illnesses (2 of which have the potential to be fatal), fighting for my life every day, fighting for stamina every day, fighting to graduate with my Masters of Dietetics degree soon. I am simply a fighter. Everything I do, I do because I know God has plans for me, even if I have no idea what they are because God has not hit me over the head with a 2x4 yet to fill me in. Those pictures may be beautiful pictures of a girl I once knew, but they aren't beautiful pictures of me anymore. So I was at a loss...</div>
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Especially because, if you follow me you know, if you don't follow me you will know now. I have had like the worst summer (or time period ever while being chronically ill). I have been incredibly nauseous even with taking the max doses of all 4 of my nausea meds, my pain has increased, my sleep is messed up, I am having dislocations and subluxations one right after the other multiple times a day and especially at night. Every time I stand up for longer than a minute or two I get shaky, nauseated, start sweating all over, and shaking and usually have to lay down on the bathroom floor because it's cool. I haven't been getting all my feeds in because they are making me sick. I've been having increasing vision problems and have gone completely blind multiple times and at least once a day from 45 minutes-2 hours (and Friday it was 9 hours) everything is so blurry I can't read what's on my phone or computer, and can make out the pics on the TV but if they have subtitles I can't read them, and having double vision while out driving and really, really bad photosensitivity. I have also gone from extremely constipated and needing multiple prescription laxatives to being way the opposite of constipated and going to the bathroom 10+ times a day, and sometimes even having accidents because I can't make it to the bathroom in time. My tube keeps popping open and leaking bile and acid all over me and my bed and my clothes. Within the past 3 weeks, the longest my sheets have not needed to be changed from an accident (tube or bathroom) is less than 72 hours. I feel like all I'm doing is washing sheets to put them on the bed, to wash them again the next day. My muscle weakness has gotten so bad it is unreal and I'm using my wheelchair a whole lot more right now. And my lungs have decided to start crapping out and causing me breathing issues and possible sleep issues. I have literally felt like I was going to die multiple times these past few weeks, and have no idea how to shake it, and it just appears to be getting worse, not better.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg4MsSlL2QwjBdXJlISbhyTJgR5iYxSM5XYvrEyudjbmeM2IimwbYbpr99yurf3X4RW8NXDsbQ9kYeLhMBRauN7hDKEhuP8DGpxVqh46Wh2c-K-dUOJZ0cLBNjx33Iq-Am7ieh5_suiA/s1600/beautiful+blog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg4MsSlL2QwjBdXJlISbhyTJgR5iYxSM5XYvrEyudjbmeM2IimwbYbpr99yurf3X4RW8NXDsbQ9kYeLhMBRauN7hDKEhuP8DGpxVqh46Wh2c-K-dUOJZ0cLBNjx33Iq-Am7ieh5_suiA/s1600/beautiful+blog.jpg" height="320" width="320" /></a></div>
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So, long story short, I feel anything other than beautiful right now.I feel so far from beautiful. I honestly have spent the past 3 weeks thinking I could never feel beautiful again. EVER. I can't even have nice things because they all get ruined by accidents or tube mishaps. I am feeling extremely frustrated that I am doing (and my doctors are doing everything) that can be done and I am just getting worse and worse. Not better at all. I've got 11 large scars from surgeries. I have a port in my chest that kind of sticks out somewhat and you can definitely touch it even if you can't see it. And I've got a foot long tube sticking out of my abdomen permanently, that is also primarily 24 hours a day, 7 days a week (minus showers, or quick pauses for something else) attached to a set of bags and a pump that provide me with all my nutrition and fluids for the day into my jejunum.And I frequently have to wear multiple braces to keep my joints stable, and have to use my wheelchair a lot too. And if I am going to be standing up for any period of time, I have to wear compression stockings, to help the blood flow go back up towards my heart and brain instead of settling in my feet (at least I bought pretty colors!! :) ) None of this makes me feel beautiful. In fact, for the past 3 weeks. I have felt ugly, worthless, and a burden on society. No matter how much in the past I've been able to say "God formed me in His image", "I am fearfully, and wonderfully made", and all the 'cliche' verses of God formed you to be perfect and just like his most beautiful and perfect child, I could not go there in my head for the past 3 weeks. I just could not accept that God's perfect will was for me to live like this. Which if you normally read my blog, you know that is totally opposite of how I normally live. I look at being sick as my mission. To bring awareness to others, and to support people with the same diagnoses get through this and realize they are still beautiful, no matter what the disease takes from them. I thought of God as using me as His personal messenger, but somehow for the past 3 weeks the signals were getting crossed. I needed to get closer to Him...and I needed to get closer to Him fast. </div>
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I've needed a lesson from myself the past couple of weeks...but it doesn't exactly work that way. God knew it was going to take a mountain to get me out of this funk...and I can't really give myself lessons if my head isn't on my own shoulders right now...so God had to draw me closer to Him, so I could go back to drawing others close to Him through the dark times, and painful times, and lonely times, and scary times. So since I couldn't teach myself my own lesson God used this instead...</div>
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This song kept coming on the radio. And it sounded relatively new. I really liked the background music (that's what this ex music geek always notices first). I really liked the rhythms and the melodies. It was a solid song. It seemed like every time when I got in my car that song would play, no matter what time of the day it was, or if I went someplace like 5 times that day, it would always play.. So I started learning the words. And man, if that song was not God sending me a message, putting it right in front of my face, then laying it in my lap for me to look it and then flew into my heart. The song is by Ellie Holcomb and it is called "The Broken Beautiful". Here are some of the lyrics. </div>
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<span style="font-family: inherit;">"I'm better off when I begin to remember<br style="box-sizing: border-box;" />How You have met me in my deepest pain<br style="box-sizing: border-box;" />So give me glimpses now of how You have covered<br style="box-sizing: border-box;" />All of my heart ache, oh with all Your grace<br style="box-sizing: border-box;" />Remind me now that You can make a way </span></div>
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<span style="font-family: inherit;">That Your love will never change,<br style="box-sizing: border-box;" />that there's healing in your name<br style="box-sizing: border-box;" />That You can take broken things,<br style="box-sizing: border-box;" />and make them beautiful<br style="box-sizing: border-box;" />You took my shame<br style="box-sizing: border-box;" />And You walked out of the grave<br style="box-sizing: border-box;" />So Your love can take broken things<br style="box-sizing: border-box;" />and make them beautiful </span></div>
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<span style="font-family: inherit;">You say that You'll turn my weeping into dancing<br style="box-sizing: border-box;" />Remove my sadness; cover me with joy<br style="box-sizing: border-box;" />You say your scars are the evidence of healing<br style="box-sizing: border-box;" />That You can make the broken beautiful"</span></div>
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When I finally heard the words, like really *heard* the words, I was reminded *again* that God can do anything with anybody. He formed us perfectly, He knew how we would be for the rest of our lives. He didn't promise us a perfect life. But he promised He would take our broken lives and make them beautiful.<br />
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Did you get that...he takes our brokenness and makes us beautiful. He makes us beautifully broken. And it is no mistake. He chose us to be beautifully broken. He chose us to be on this path. Those of us with chronic illnesses. Being beautifully broken is one of the hardest character traits to have, but I also think that it's one of the most rewarding and most important character traits too. Because if we are not beautifully broken. If no one is ever broken. How can we ever know suffering? How can we no turmoil? We will not be able to understand what Jesus gave up and sacrificed for us. If you are one of those chosen ones to be beautifully broken, you should trust that God knows what He is doing and He is using you to teach others lessons about life.<br />
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So once I finally realized what my true beauty was. What it really looked like for me, a 28 year old, female, with 12 chronic illnesses (2 of which may be terminal), to be beautiful. It is so much more beautiful than the pictures I showed above, in my opinion, because they show the real beauty of me. The beautifully broken side of me. Do you agree:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibRGUv9J_jekb0hTYvSljFVXCBGVfIPtB8t3KS19qMNhHqiQgE-XWks7G08yNS4colJ29VoN8fetMCFYp6pcB8B5Qp-EiecWwnuzAXVkulTFtGIN4Xpe59_eJjWWVbgWvDzvEVIrZ6EQ/s1600/photo+%252887%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibRGUv9J_jekb0hTYvSljFVXCBGVfIPtB8t3KS19qMNhHqiQgE-XWks7G08yNS4colJ29VoN8fetMCFYp6pcB8B5Qp-EiecWwnuzAXVkulTFtGIN4Xpe59_eJjWWVbgWvDzvEVIrZ6EQ/s1600/photo+%252887%2529.JPG" height="320" width="320" /></a></div>
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There are pictures of me wearing braces on the entire right side of my body, the 4" scar on my left thigh from my muscle biopsy, the feeding tube and 5 scars on my stomach from my tube placement, stomach and small intestine biopsies, and endometriosis ablations, and ovarian cyst removal surgeries, me getting my infusion that I get every week at the infusion center, me trying out my new (it was the first day I got it) wheelchair in the kitchen, my scar for my port on my right upper chest, me with my formula and Gatorade bags which is the food and hydration I get on a daily basis, a selfie of me with my new "mito: what the cell" t-shirt on a day where I looked particularly good, and a quote that reminds you that every scar shows some battle that you have survived. Which is very, very helpful advice, because then we can look at our scars as a positive thing, rather than something ugly. </div>
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Although the pictures above are not "glamour shots" by any stretch of the imagination. They are beautiful pictures of me. They are beautiful pictures of who I really am. These are the pictures of me, being beautifully broken, and showing that I am gonna fight back, and overcome whatever situation comes my way. God is using my circumstances to help others. He has this all planned out. I don't feel better physically, but I sure do feel better knowing that I am beautifully broken by God, for God, to do good work for His kingdom. I just have to keep reminding myself I am not broken. I am not trash. I am not worthless. I am beautifully broken by God. And am loving serving him through my beautifully broken journey, as long as it takes, even if I do have some hiccups along the way, we are all allowed to have hiccups every so often, right? Of course we are. </div>
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For today, I'm going to forget about the broken part, and just focus on the beautiful, because you have to admit, I look like I have it all together in this picture. You would never guess how sick I was in this picture. You would not know by looking at it that I was up from 8:30-11:30 nauseous and dizzy, had a 4 hour infusion that I was also nauseous through, had a conference call with a UMDF (united mitochondrial disease foundation) staff person about the walk I'm on the sponsorship committee for because I have mito, or spent all night fighting sleep while my best friend was over here because I really wanted to hang out but could barely stay awake because I had over-exerted myself. And now that it's past my bedtime I can't go back to sleep. Nope that's not what this picture looks like at all. Not like someone who's broken at all. Just someone who is beautiful. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFqUDkPpHnSLApCUbVaJXdqDmo2Pb32_KHUYUGu2Lx5XKWEOqKY3XCJ11yUOT-laggWdX7MThYPDU6Q3RZwBIyesERD2jeXOgfxaLR3tK55Yul3QxJ6Yd8nr83cWEc2BtPS1cnUOxy6w/s1600/photo+%252886%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFqUDkPpHnSLApCUbVaJXdqDmo2Pb32_KHUYUGu2Lx5XKWEOqKY3XCJ11yUOT-laggWdX7MThYPDU6Q3RZwBIyesERD2jeXOgfxaLR3tK55Yul3QxJ6Yd8nr83cWEc2BtPS1cnUOxy6w/s1600/photo+%252886%2529.JPG" height="320" width="320" /></a></div>
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<span style="text-align: left;">But we all know that being beautifully broken is something that we should not be ashamed of, but embrace. </span></div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com2tag:blogger.com,1999:blog-170807854514947077.post-73758532342784163002014-07-13T06:30:00.001-04:002014-07-13T06:31:42.084-04:00Being Sick, Well<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit; font-size: small; font-weight: normal;">If you have been reading anything about me or my condition in any form or fashion for the next 3 or 4 weeks, you will know that this chronically ill gal, has been very ill, even more ill than my normal chronic illness ill feelings. </span></h2>
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<span style="font-family: inherit;">I have been almost passing out, profusely sweating, and tremoring every time I stand up even if it's just like for 30 seconds or more. I've been having worsening vision issues to the point where it is very scary to drive long distances and on main roads because I don't trust myself. My vision is super blurry and I can't read anything up close and far away is getting worse. This is majorly concerning since I start back to school next month, and that's a lot of reading involved. And I've been having weird GI <span style="font-family: inherit;">issues. For the past, 8 months I've had to use lots of laxatives to make me go to the bathroom...and now it seems like I don't have to do anything and it happens many, many times a day. And I can't control it. And it happens NOW, not in 3 minutes it takes to get to the bathroom. NOW. I basically can't go outside at all because it's too hot and that just makes my symptoms magnify so much more and I get even more miserable. I'm still trying to get to most appointments. But I am even canceling many appointments because I just don't feel well enough to get out of bed and drive across town. I am just plain and simple sick.</span></span></div>
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<span style="font-family: inherit;">In addition to just being plain sick. I am still trying to maintain my friendships (on Facebook and in person) but it is super hard because I am so exhausted. And I am doing the data collection for my thesis. And that just takes up all my energy right there and it makes me insanely exhausted on top of everything else. I have *never* felt this sick before as I have felt the past 3 or 4 weeks. But yet, people are still telling me I'm an "inspiration" and how awesome I am at "being sick" and how I am so good at "managing everything"...and I generally laugh at them as I am reading other people's posts in groups and crying in the background because I'm identifying with every post of hurt and shame while I'm getting PM's of how inspirational and strong I am. Don't get me wrong. I like the fact that you think I'm inspirational, and strong, and manage things well, and am good at being sick. But I'm not. Really. I've just come across several coping mechanisms that I use as my mantra, as my rules, my guidelines really...of how to be sick, well. I'm going to share them with you now too, so hopefully you can learn to "be sick, well" as well. So in no particular order here we go.</span></div>
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<span style="font-family: inherit;">1) Have an attitude for successful coping. This does not mean you have to have a positive attitude while you have pain or are exhausted. But there are certain attitudes that those who cope with chronic illnesses would do well to maintain at all times, such as: live for today, one day at a time, not in the past or the future, treat problems as challenges to overcome, accepts you illness and reject "why me" questioning, </span></div>
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<span style="font-family: inherit;">2) Daily Living Tips: Be organized and set realistic goals and prioritize activities so you can cope well daily. Decide what is most important and what can slide. Live your life as fully as possible. Seek help from others when you feel you can't cope, allow flexibility and extra time in your plans, take tasks that require concentration more slowly, get medicines and routines organized and written down, get your most difficult tasks down at the time of day you feel best, realize you may have different abilities one day than you did another day. Learn to listen to your body. Stop and rest as soon as you begin to feel tired and don't do too much just because you start to feel better. </span><br />
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<span style="font-family: inherit;">3) Relationships: For successful relationships during chronic illnesses you need to ask for what you need and be specific. You may feel like a burden on others, but if friends and family offer to give you a break and take some of the pressure off of you in some way, take them up on it. Gen help from all possible resources, educate your friends and family about your illness(es), and try to enjoy being around other people as often as possible. </span><br />
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<span style="font-family: inherit;">4) Develop positive self- talk that can help you overcome your negative thoughts. Some of these self-talk phrases to keep your attitude positive are: don't blame anyone for your illness, judge success as taking care of yourself well, enjoy small pleasures when you see them, know that you are not defined by your illness (or by what you can or cannot do), remember that your value and worth have not declined because of your illness.</span><br />
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<span style="font-family: inherit;">5) Understand your chronic illness- make sure that you are well versed on your condition. All the causes, symptoms, wonky things it does to your body, treatments, all the things like that. The problem with having these chronic, invisible, rare illnesses is that the doctors aren't as well versed in them so we have to be on top of the research ourselves so that we can keep the doctors on track and make sure they are helping us and giving us the right treatments. And just so we are aware of what might be going on in our bodies so we don't freak out when it starts happening because we are aware of what could happen. </span>Make sure you have ALL the information about your chronic illnesses so you can be educated about what is to be expected.<br />
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6) Consult with a doctor after identifying your main symptoms that are unusual. If there is something going on that is out of your typical chronic illness symptom feelings, make sure you contact your doctor. You could be what I call "real person sick" with a virus or other type of infection. It's so hard to tell when you are chronically ill if you are sick or if it's just your illness because you are so used to having so many symptoms all at the same time. Make your doctor a partner in your care, but you should be the main voice and determining factor, you're in your body and know how to feel, not them.<br />
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7) Manage your team of service providers: You need to be your own best advocate and make sure that all your doctors are on the same page with each other.These days your lucky if your specialists even send a report back to your Primary Care Physician (PCP). They definitely don't send reports back to your other 5-10 specialists. So there is no way for everyone to be on the same page, unless you make sure you take good notes or record the appointments so that you can tell your other specialists what the previous specialist said so they can be on the same page. You need to coordinate your care yourself since the specialists don't know how to do it for you.<br />
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8) Use complementary alternative therapies, that's what they are there for. Don't just use medications and hope all your symptoms will go away because we all know meds don't work 100%, even if they do take the edge off somewhat. Consider using, in addition to pharmaceutical prescription, massage, pool therapy, physiotherapy, intravenous therapy, counseling, following good nutrition habits, and following your spiritual path to get healing feelings from your spiritual path as well.<br />
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9) Create an oasis in your home: Make sure these areas in your home are made safe: floors, walls, windows, furniture, closets, the bed, bed linens, pillows, laundry methods, personal habits, filtration system, ventilation system, general maintenance. For me, when I found out I would be moving to the back half of the house which is a rather large space and basically like a little apartment, I spent a lot of money, time, and energy making my room a very relaxing, soothing place to be because I knew I would be spending so much time in bed. I am so happy in my room, and my friends that come over always comment about how relaxing my room is too. <br />
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10) Make sure your whole family is involved and knows what is going on, what the names of your diseases are, what the possible symptoms are, a basic overview of what meds you're on (or at least how to find a list) in case you are unconscious or something and have to go in the ambulance. Things to watch for, etc. Things you may need to watch for and things you might need to be aware of for things I (or you) may not be able to do anymore.<br />
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12) Make a healthy investment in your self (stop smoking, drinking, start exercising more, etc). Those who made healthy investments in themselves statistically had better symptom control of their chronic illness than ones who didn't. Plus, if you make a healthy investment in yourself, you aren't only possibly improving your symptoms for your chronic illness but you are also making some other aspect of your life improved as well. :)<br />
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13) Manage your medications. Remembering to take one pill a day is tough; managing 10 or more is daunting. Knowing about the drugs you take — why you take them, how best to take them, and what problems to watch out for — is as important as learning about your condition. Merely reading a book about prescription drugs sometimes prompts more worries than it allays. Talking with your doctor, nurse, or a pharmacist can put drug information into perspective. I have such a routine down with my meds know that I don't even have to think about which syringes I need, which bottles need to fill which kind of syringe to what line, and all that. They are always in the same order. I barely have to look to pull up my meds now. Neither of the 5 times a day I take them.<br />
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14) Reach out. Doctors, nurses, and other health care professionals aren’t always the best reservoir for information about what it’s like to recover from open-heart surgery or live with heart failure. To get the real scoop, look for a support group in your area and talk with people who have been through what you are facing. The support groups I'm in on Facebook, and the relationships I've developed with some of the people in them are some of the best friendships and relationships I have developed on my chronic illness journey. There is just something so special about someone being able to say, "what, me too!" when dealing with such crazy circumstances. </div>
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15) Plan for end-of-life decisions. If the diagnosis of a chronic condition, or life with one, has you thinking about death, channel those thoughts to the kind of care you want at the end of your life. Spelling out whether you want the most aggressive care until the very end, or whether you’d prefer hospice care and a do-not-resuscitate order, can save you and your loved ones a lot of confusion and anguish later on.<br />
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16) Recognize your limits--When living with any kind of chronic condition, it's important to recognize your limits. It can be tempting to push yourself too hard, especially in a society that praises those who push past the outer limits of endurance, but doing so usually results in more pain, fatigue, and limitation down the road. **This is one of the things that I struggle with, by far, the most. I have had so few 'good' days lately that when i have one, I do everything in one day and it results in the next 2 days. Learn to conserve your energy and recognize your limits, so that you are able to enjoy the tasks you are able to do.<br />
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17) Learn your body--Every chronic illness patient is different, and what works for one might not work for another. Keep track of activities that lead to increased pain or fatigue, as well as activities that help rejuvenate and relax you. Identify any triggers — such as food, environment, or poor sleeping habits — that cause your symptoms to worsen, and try to avoid them. Learning which things help or hurt you, personally, can help lead to more effective management of your chronic condition — and a happier, more fulfilling life.</div>
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18) Remember that even insensitive comments come from a place of love--When you're living with an invisible illness, it’s hard not to feel bombarded by ignorant and insensitive comments. “But you don’t look sick,” people will often say. Some may try to convince you that it's “all in your head” or that you’re just not “trying hard enough." Frequently, friends and family may load you with vitamins, supplements, and other “miracle cures," or encourage you to push yourself harder and forget your pain or fatigue. It's important to remember that, even the most insensitive-sounding comments are coming from a place of love and caring. Usually, it's difficult for friends and family members to understand just what goes on in the life of a chronically ill person, and they're trying to reach out and show their love in the best way they can. When you find yourself on the receiving end of an ignorant or insensitive comment from someone you love, try to accept it in the spirit it was intended, then move on. Remember that only you can know what is best for your lifestyle, and only you can understand your own limitations. Be honest with those around you<br />
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19) Frustration with living with a chronic illness--It can be frustrating when others don't understand what you're going through. When you have an invisible illness, often that's the case. Because others don't see the time and effort that goes into accomplishing even the smallest of tasks, they may focus on the fact that you look normal.While it can be tempting to always put on your best face when around others, it's important to be honest about what you’re experiencing. In a gentle and loving way, try to help those around you understand what you’re facing. If appropriate, explain how pain or fatigue makes your daily life difficult, or describe how everyday tasks such as household chores can become too much for you to handle. Invite friends and family to ask questions in order to better understand your condition. It’s OK to have conflicting feelings When you struggle with chronic illness, sometimes, it can feel like you're at war with yourself. Like everyone, you want to look good and seem “normal.” At the same time, it's frustrating when others don’t understand your limitations. You may feel caught between the need to “prove” to others that you’re really sick, and the desire to present your best self to the world. It's OK to feel conflicted. Navigating life with an invisible illness is tricky, and the desire to look normal along with the desire for your illness to be taken seriously are natural. Be gentle with yourself, and don’t forget to have a little extra compassion for yourself and those around you. </div>
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20) Live your life fully, regardless--Although living with an invisible illness or disability poses many unique challenges, it's still possible to have a wonderful and rewarding life, in spite of pain and fatigue. Always remember to honor your limits, learn what works for you, and be patient with yourself and others.As difficult as it may be, an invisible illness doesn't have to stop you from living a life filled with happiness and satisfaction. Let go of expectations, Find supportive friends, search for the joy in the blessings, use your talents and skills for things you care about, encourage someone else.</div>
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21) Take care of yourself first.-- Because we're brought up to bear the children who will start out life completely dependent on us, this is especially hard for women. I’ve learned that if I want a balanced, productive life, I need to offer care, compassion and respect to myself first. This is what allows me to care for others.</div>
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22)Never, never, never give up--Getting a diagnosis for a poorly understood chronic illness can take years. Many patients give up and settle for a life of bitterness or magical thinking about miracle cures. Disability and medical insurers play on the sick by denying legitimate claims, in the hopes that weary patients will give up their appeals. My experience has been that a determination to access comprehensive and compassionate care, and to receive the benefits to which I am entitled are causes worth fighting for.</div>
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23) Be honest about how you're feeling--People can’t read my mind. Just because they don’t understand doesn't mean they don’t care. I find that if I'm honest and straightforward about my condition and my limitations, without whining or complaining, people are generally very willing to be patient and accommodating toward me.<br />
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24) Enroll in the School of Whatever Works--In managing my health needs, I've utilized and benefited from drug therapies, surgery, dietary changes, physical therapy and exercise coaching, acupuncture, massage therapy, herbal supplements, homeopathy, enforced daily rest and more. As soon as I think I have it all figured out, my symptoms change and I have to enroll all over again in the School of Whatever Works.<br />
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25)Make friends with fatigue.--I rest in bed for several hours every day. This proactive habit prevents the complete collapse that comes from wearing myself out. Instead of fighting the fatigue, I’ve learned to embrace and cherish my rest period, including that little snack and drink I loved in kindergarten.<br />
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26) Live as a child--Kids tell the truth, ask for help when they need it, freely give and receive hugs, laugh easily, fall asleep when they’re tired and cry when it hurts. I try to follow their excellent example.<br />
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27) Step out of the box--To live fully, I occasionally need to push the limits and step out of my little sick box. Whether it is through travel, volunteering, or learning something brand new, stepping out helps me feel more fully alive and learn new things about myself.<br />
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28) Search for silver linings--I believe all of life’s experiences contain value, even the ones that seem bad. Being sick has taught me to be a more kind and sympathetic person, to set reasonable boundaries, to release negative people from my life and to appreciate the beauty in the present moment. These are not small rewards for searching for those silver linings.</div>
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29) Find a way to share your gifts--I’ve come to believe that the reason we're here on Earth is to discover, develop and give our gifts. Illness did not exempt me from that purpose and obligation. I could no longer give the gifts I had been trained to give, but I could, and did, learn some new ones.</div>
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30)Be still.--I am still for a time each day because I must be. I've grown to love the quiet and peace that abides in the stillness. Learning to be still has improved my health, enriched my intellect and opened a spiritual center that used to be swamped by the noise of living. </div>
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So, anyway, these are just my 30 tips on how to be sick, well. Meaning 30 ways to cope with being sick with a chronic or terminal or whatever type of illness and still feel good about yourself. These tips will help you life a more fulfilling life, even though you are sick. And will help you maybe come up with some of your own tips for being sick, well (being good at being sick). Anybody else got some other ideas. Sometimes we just have to hold on for dear life and wait for things to change by waiting for the way the wind blows to change. Sometimes we have to rely on others more than others. But we always need to know how to be sick, well. Because being sick, badly...just really isn't any fun, now is it? </div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-78583261345255752712014-07-04T23:24:00.002-04:002014-07-04T23:24:40.485-04:00A Dependents Thoughts on Independence Day<div dir="ltr" style="text-align: left;" trbidi="on">
Independence Day is the day in America where we celebrate the 'birth of our country'. Where we celebrate our rights as Americans to have life, liberty, and the pursuit of happiness. The day where everyone gets on the bandwagon on Facebook and thanks God and the troops for protecting our freedoms and rights that we gain from living in this great country. Freedoms and rights that are really only afforded to Americans. There are patriotic songs sung, and fireworks going off everywhere (for the week before and after) both making it impossible for me to sleep and for my dog to not have panic attacks every day.<br />
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So we are all on the same page here, let me tell you what the Merriam-Webster definition of 'Independence' is "free from outside control, not depending on another's authority, and not depending on another for livelihood or subsistence." Besides the political debate I could get in about the first portion of the definition (because I think the government is both controlling us and making us use their authority a lot more now), I also realize that I don't really fit into the last part of the definition either. I definitely am dependent on my mother for livelihood and subsistence. With the amount of bills I have coming in and the amount I'm spending on meds and driving to my docs 2 hours each way away and things like that I definitely do not have enough to live on substantially if I were to have to pay rent and utilities.<br />
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So realizing I don't really fit the 'independent' category. I looked up the definition to 'dependence'. That definition is being "contingent on or determined by, or requiring someone or something for financial, emotional, or other support." Now this definition definitely fits me in numerous ways. So I'm going to go over how I'm dependent on certain things and at the end how all that effects me.<br />
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First of all, moving back home to live with my mom at the age of 26 when I swore up and down I would never leave NC and definitely wouldn't leave NC to move to IN. But I have to live with my mom because the doctors won't let me live alone. I was passing out too often, falling down because of muscle weakness, being hospitalized repeatedly, not able to keep up with my meds at some point. So I had to adjust to this very real and extreme life change for me, very fast. If you remember back from my first blogs, you will see I was in the hospital for 13 days and when I was finally released I was told I couldn't live alone anymore. I didn't have a job anymore because I had just quit (which we are pretty sure is why I got so sick because of the stress), so I couldn't pay my bills anyway. But we threw away, sold, or gave away almost everything in my apartment. I moved an entire 850 sq. ft apartment in a minivan and my Honda so we could drive back to IN. That's all that I could bring because there was no more room and we didn't know how to hall it all. That was a very humbling, and Job like experience. I had to learn that stuff is just stuff and it can be replaced, but I can't be.<br />
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I have had to fight extremely hard to work towards my degree completion of Master's in Dietetics which I decided to do basically for fun when I got to IN because I was bored. But it's been a great experience. Minus the fact that the professors don't follow my accommodations all the time. I have definitely physically fought through thick and thin to complete this degree, and I *WILL* finish it this May, no matter what. I'm also working on my thesis which has been fun, but overwhelming for sure. So I'm having to learn pacing techniques, especially since I'm going back to campus based classes in August (as opposed to online). I have tried my hardest, but you can definitely tell that I'm dependent in these situations and not independent. I have friends that take notes for me and a digital recorder that record lectures for me in case I'm foggy and don't hear everything in class. But I won't give up!!<br />
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I also have become dependent on health care aids to make my life a lot easier. Specifically, I have a shower chair because I can't take a shower standing up or I will pass out. I also have grab bars all over my bathroom that help me get up and around in my bathroom. I also have a feeding tube now. A jejunostomy tube (J tube for short) because my stomach only has 13% nerve functioning yet so I'm not supposed to eat very much, only like once or twice a week because it takes a LONG time for the food to get to my small intestine and a LONG time to get it from my small intestine to my colon then out. I'm on my feeding tube 24/7, it's like we are best friends. (haha, joke). I also have a port in my chest because I get so many infusions and lah work done and my veins are just completely shot. I also have braces for just about every joint you can think of because all my joints dislocate or subluxate frequently. And I have a cane that I use for mostly in the house, and a manual custom built wheelchair that I use for when I'm out in public. I'm dependent on all of these devices/equipment/tools to help me stay as functional as possible, for as long as possible. They just kind of delay the inevitable. But I'm definitely dependent on them. I don't know what I would do without my feeding tube or my wheelchair. </div>
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I'm also extremely dependent on my mom because she takes care of me when I get super sick and drives me to my far away appointments if I feel I can't drive that day. Several of my friends are awesome too and let me depend on them for emotional comfort, decreasing my social isolation, letting me tell them my gross war stories, 'walking' with me sometimes (I use my wheelchair, my friend walks), and many more people I'm sure I am dependent on. For me, admitting that I depend on others is a major breakthrough because I have always been an extreme Type A personality and athlete, so I'm used to being able to go above and beyond and pushing myself to the max. I never accepted any criticism or complements very well and would get embarrassed and just run away. Now, if someone complements me or gives me a good review on Facebook, I read it and let it soak in and embrace that I helped someone be a better cook, even if it was 1 person out of 300 surveys. I enjoy being complimented now because I'm still chipping away at it, but as my mito progresses day by day, it's going to get harder and harder to keep up. I appreciate the words of encouragement and praise. It's lovely. But, because of my Type A personality and hard head I still don't enjoy having people "care for me", I like people that try to help but don't fall all over me and circle over top of me making sure I am doing the right thing. If I have to be dependent on some people (which I know I have to at this point), I would like the co-dependent relationship. As in the other person in our dependent relationship acts like this and follows my wishes. I know how to take care of myself, I just need help and support sometimes. And I would really prefer that my relationship with my mother (my caretaker) involved her giving me a bath, etc. That's fine for some people, but I'm not there yet. But I can save myself...even though I can save myself. </div>
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The hardest part for me is the fact that I feel like I'm supposed to be in the prime of my life. All my other friends that are my age are getting married, buying houses, finding dream jobs, having kids. And I'm not really going to ever get the chance to do any of these things. Realistically. I am dependent on far to many things. Where I live right now, how I got here, what degree I'm doing, what thesis I'm writing (and who stays in and drops out), mobility aids, feeding tubes, and other health care adaptive equipment, my mother having to take care of me. I didn't even touch on the meds that I am dependent on, or the Physical Therapy, or chiropractic adjustments, or massages, acupuncture. etc. I've always previously been a free spirited, crazy outgoing personality type and this disease that zaps all your energy has completely made me an almost completely different person. </div>
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So, anyway, on this Independence Day, I've discovered that even if you are dependent on so many things, I am still that free spirited, crazy (not as outgoing) personality type. And also definitely still a Type A personality as well. And even though I must depend on so many variables at all times, that doesn't mean that part of the Independence Day truths cannot be implemented. Because I am definitely in the land of the free and home of the brave. And it's that freedom that often gets me through such bad days sometimes. I just go and sit out there and get close to nature and think and it calms me down. And even though I'm not feeling very independent right now, no one can take away my sense of freedom and bravery which are the main fundamentals this country was founded on. </div>
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So despite all my struggles and all my dependencies and no matter how bad it stinks, this dependent will continue to love Independence Day. Because it gives you something that no friend can do for you by holding your hand or sitting next to you in the hospital. It reminds me that we fought for our rights and I always love to add a little freedom and bravery to my character traits. And Independence Day can provide both of those for me. :)</div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-7819522559328271062014-07-01T22:37:00.000-04:002014-07-01T22:37:16.261-04:00Turning Your Disabilities Into Abilities<div dir="ltr" style="text-align: left;" trbidi="on">
I have several new readers, so I thought I would revisit the topic of how I feel about having so many chronic illnesses, and I've had a particularly rough couple of weeks, so I think I need to be reminded of my mission for myself as well.<br />
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I've always looked at my having so many chronic illnesses as a blessing, a gift from God, a way to give me experiences so that I could help other people with chronic illnesses stay positive and uplifted so that they could get through their times of turmoil, suffering, and uncertainty. Back in November of 2011 (which was only about 3 months into this journey at such a severe level), I wrote this in my blog:<br />
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<span style="font-family: inherit;">"I am so blessed that He chose to make my life fall apart. I am so blessed that He chose me to be sick and He chose me to lose my job. Because I was complacent in my faith, I didn't know it, but I was way complacent in my faith, and now I'm not. Because now I see Him in everything...even the small things. Now I am blessed, my life is a mess, but I am blessed and I am more beautiful because of it."</span></blockquote>
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Some people think I'm crazy and out of my mind when I talk about my crazy life of chronic illness as being a gift from God. But to me it makes perfect sense. The Bible tells us that no matter what we are doing, we should do it as if we are working for God and not for man. And what I happen to be doing right now, is being sick. So I'm using my work of being sick, and working with it with a full heart, because I'm working for God. I'm helping to fulfill his commandments of me. <div class="separator" style="clear: both; text-align: center;">
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We are commanded to use our gifts, in the best way we can, and to help people while using them. So I've sort of seen it as my mission to take my passion of teaching, life long learning, empathy, medical knowledge, and compassion to help others with chronic illnesses understand their illnesses and be able to better cope with their illnesses as well. This is a way where I can use gifts God has given to me, to help others in similar situations cope well and it also benefits me too, because I feel like I'm helping to some extent and I also develop friendships with these people and gaining life long friends. So the relationships are mutually beneficial. </div>
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You don't have to be the world's largest authority on how to deal with chronic illness. Or how to counsel people out of depression. Or how to tell people to live every day like it's your last, because it might be. In order to help people and inspire people with chronic illnesses to live their best chronic illness life well, is to live your chronic illness life well to let others know that you can get through it. It may suck right now (and coincidentally I've been having a horribly symptomatic 3 weeks and I have to keep verbally repeating to my self 'you can get through this, you make it your goal to inspire others, you are not listening to your own advice to everyone else') but you will survive and you will adapt and it will get better. I promise. You can learn how to use your disabilities to help others with their disabilities from your experiences. That empowers you, and makes you feel that your suffering isn't for nothing, and actually has some type of purpose. It's almost like God is using your suffering and bad experiences to do amazing things for other people. </div>
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We also have to remember that God doesn't make ineffective/useless people. He makes everyone with a purpose. He makes everyone with a plan. He makes everyone beautiful in His sight. He makes everyone perfect for Him and that means that you should think that you were made perfectly too. No matter how sick you are or despite what you can't do. No matter how broken you are. No matter how much suffering you've gone through. God made you perfect. You need to never forget that. He made you for a purpose. You need to look past your disability and find out what abilities you have within your disabilities to help others along the way get through some of the same struggles you've already conquered. You are beautiful and perfect to Him! </div>
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There is nothing that says that we have to do the best all the time either. Even if we are seen as the ones that are always seen as the one offering support all the time. We are allowed to feel completely defeated and broken down. Dealing with chronic illnesses is debilitating to everyone at least once in a while. It's a lot to deal with and process. And sometimes we need to admit that we are defeated, we are broken, and that sometimes we tried our best for the day and even though it's not all we wanted to do, it's all that we could do, and that was just enough, and it's ok to get just enough done. We shouldn't have to explain ourselves. </div>
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We have to keep believing that the Lord will heal us one day. Even if that day is after we have left this world. Healing will happen one day. And that is the only way I can personally deal with my chronic illnesses, is to know that my God will heal me one day. And it will be a beautiful healing and everything will be perfect, pain free, no more tears. There will be no more suffering when I'm healed. And I truly believe that. And I try to tell others with disabilities the same thing. </div>
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But the most important piece to turning your disabilities into abilities is to always have a hopeful attitude. Always look on the bright side. See the grass as greener. The glass as half full. Make sure positivity is prevailing in your life. Because if you are going to turn your disabilities into abilities you need to believe with your whole heart that you have something to offer. You have some kind of wisdom or ability or piece of advice that will help others with disabilities improve their quality of life. And the more and more positive that we are, we know that the whole point of having a chronic illness is knowing that we are just supposed to hold on and fight for your life. Because how I mostly turn my disabilities into abilities, is not just by helping people find solutions to their problems or offering nutritional or tube feeding advice. No, I turn disabilities into abilities by always, always knowing that the whole point of life is to know that we are aiming for a chance that maybe we'll find better days. And hanging onto that hope, with all that knowledge...is imperative to the cause of turning disabilities into abilities because you can't have abilities if you don't have good days. </div>
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But I truly believe I was given all these crazy medical conditions, and the passions for healthcare, teaching, advocating, and "fixing" things because God wants to use me for a purpose. He knows that I will fight for the rights of others. He knows I will advocate for the least of these. He knows that I will set things straight. He knows I will educate others. He knows that no matter what hardship or disability He gives to me, I will turn in around and make it an ability. Because I am too positive. And I do not let these diseases win against me. I am stronger than some stupid diseases tryting to kill me. I am an overcomer. I have so many new abilities from being disabled it's not even funny...which is why I am so fond of the phrase 'differently abled'. But for right now, I'm just using my talents and abilities to the best of my abilities and will continue to do so, until there is no fight left. </div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com1tag:blogger.com,1999:blog-170807854514947077.post-40178408626133396542014-06-20T22:29:00.001-04:002014-06-20T22:29:57.361-04:00What We've Got Here is a Failure to Communicate<div dir="ltr" style="text-align: left;" trbidi="on">
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Communication. We all do it. Everybody in the entire world communicates. From the day we are born to the day we die we communicate.</div>
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Everybody communicates in a little bit of a different way and we sometimes don't understand each other at all because of the fact that we may not even be speaking the same language. In fact according to the Ethnologue, which is considered to be the world's most extensive catalog of the world's language reports that as of 2009 there were 6,909 distinct language in the world! </div>
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On top of there being so many different languages that may cause a mis-communication problem. There are also a whole bunch of different types of communication also.</div>
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<li>There is verbal communication which includes sounds, words, language, and speech.</li>
<li>There is also non-verbal communication which convey's the sender's message without having to use words; it involves the use of physical ways of communication such as tone of voice, touch, and expressions, symbols, and sign language.</li>
<li>There is also written communication which helps convey the message of the sender with the help of written words. Letters, personal journals, emails, reports, articles, and memos. This form of communication also features visual communication as well, especially when the messages are conveyed through electronic devices such as laptops, phones, and visual presentations that involve the use of text or words. </li>
<li>There is visual communication that involves the display of information, where the message is understood or expressed with the help of visual aids. For example, topography, photography, signs, symbols, maps, colors, posters, banners, and designs that help the viewer understand the message visually. </li>
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We already know from <a href="http://medicalmusingsbymeg.blogspot.com/2014/05/im-coming-outcause-i-gotta-get-this-off.html">this post</a> that I am not the best at communication to begin with because of my slightly Asperger's brain. Then add on trying to read people's thoughts, emotions, and feelings on a flat, black and white screen with a flashing cursor, and no tone of voice?? Impossible for me most of the time to understand what people are saying. Quite frankly I have no idea how any relationships (friendly, familial, or intimate) are still held together because of the lack of tone of voice and body language in a Facebook status.</div>
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Facebook, Twitter, Instagram, Pinterest, Blogging, Google +, and many other social media/networking pages I swear were invented to cause you to have fights with your friends because you read your friend's status and they're complaining, and you're like well I do that sometimes, oh crap she/he is talking about me. I guess we really aren't friends anymore. Then you send a PM to them or email or whatever and start telling them off and they can't get a word in edgewise to tell you what they posted has nothing to do with them. </div>
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The first rule of social media/text communication where you don't have a ton of voice or the whole story is to private message the person and make sure that you are cool with that person or if they want to "vent" about anything because you should not ruin relationships over a Facebook status for goodness sake. Make sure you know the whole story, don't judge so quickly. Don't get defensive and ready to fight until you understand where your friend is coming from.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjARU_yRtaykU4RYFkVUwD58msbHO_3nCBUr2BA0hMIOTxn31YhgzPQJIvSNpYrlo4k3K8s9xRD7M2vmmqO_IYtLGsHFA5yVsGXETdrqH4it4GRGw8TDB1ETbxGG7B3lGOmuXlS9kcEUA/s1600/photo+(60).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjARU_yRtaykU4RYFkVUwD58msbHO_3nCBUr2BA0hMIOTxn31YhgzPQJIvSNpYrlo4k3K8s9xRD7M2vmmqO_IYtLGsHFA5yVsGXETdrqH4it4GRGw8TDB1ETbxGG7B3lGOmuXlS9kcEUA/s1600/photo+(60).JPG" height="320" width="240" /></a></div>
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Rule # 2 of communication is to not spend your precious, little amount (if you're a spoonie) of energy backing yourself up. Odds are they will hate you and misunderstand you and judge you no matter what damage control comes out of your mouth. If they are going to misunderstand you and they make that very clear, then don't waste your energy, just walk away and don't look back. The conflict is probably doing more damage to you internally than them anyway. I dealt with a situation of harassment and threatening emails being sent repeatedly by someone who saw a facebook status I posted, didn't stop to get the whole story, took offense, and started defaming my character and integrity, harassing me, and threatening me. I just blocked her from all avenues because ain't nobody got time for dat! Seriously. I don't. It's not worth my energy.<br />
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Rule #3 For some reason, when I tell people things, it doesn't always get interpreted the same way that I said it. Just because you don't misinterpreted what I said, does not mean that I am wrong, or unethical, or unprofessional, or don't know what I'm talking about. It just means you weren't listening to what I was actually saying. Understanding is one of the hardest parts of communication to 'get'. Which brings us to rule #4 perfectly.<br />
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Rule #4 As a society we are taught that we are supposed to act interested in people's conversations. And we are expected to have the perfect reply to fit straight into the conversation that will flow and make the person feel validated. The stupidest part of that though is that while we are coming up with our "perfect reply" we aren't listening to the conversation at all and could be missing out on ample information that we could reply to more readily and appropriately, but we didn't hear it. Stupid right? Like why are you "listening" to a conversation, but not hear anything.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjku0YsZAunXJNOwtaEwyYMEKlobth6OQzQJVjxqtmC2CBTwzNyl6mXXNK-3zaqfnvon7_zLiD3BWiVbiCQUzPn5kX6oym744STGeXQx1UspJDADDsDArgN2f7PqjICaKp5rgWySobP7g/s1600/photo+%252857%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjku0YsZAunXJNOwtaEwyYMEKlobth6OQzQJVjxqtmC2CBTwzNyl6mXXNK-3zaqfnvon7_zLiD3BWiVbiCQUzPn5kX6oym744STGeXQx1UspJDADDsDArgN2f7PqjICaKp5rgWySobP7g/s1600/photo+%252857%2529.JPG" height="320" width="320" /></a></div>
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Rule #5 Remember that we all come into a conversation/communication setting with completely different backgrounds and we are all unique in ever way. So the way that I am saying something might be offensive to person X over there. Or person Y saying something else may offend me. We have to remember that everyone has a different perspective being brought to the table. We should embrace the diversity in our perspectives and put them to good use to solve more problems, instead of creating divides. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj5XmKkzW9Tmdw0ALss8AKn_OUlg_op0ByzxmVL8cz2BTjKkM2yCkE3p80z4svAGRRoWGjQi9gDVObQNRXdHyMMlMaw9YjUskbY5MQwMkcreW3xIBPtMLnkwmVSYOOTTAy_IkCJcNfDg/s1600/photo+%252861%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj5XmKkzW9Tmdw0ALss8AKn_OUlg_op0ByzxmVL8cz2BTjKkM2yCkE3p80z4svAGRRoWGjQi9gDVObQNRXdHyMMlMaw9YjUskbY5MQwMkcreW3xIBPtMLnkwmVSYOOTTAy_IkCJcNfDg/s1600/photo+%252861%2529.JPG" height="236" width="320" /></a></div>
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Rule #6 If you did have a communication mishap with somebody...let it go. Get over it. Ask for forgiveness or give it. Life is to short to worry about things that happened yesterday, I've got enough to worry about today without worrying about yesterday too. Don't let someones craziness and intercommunication incident with you control your today, leave it back there. And if it was bad enough, block them from your life. ;)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4QJJ1BfEjC5TXRako7InsMXjrJNFnMV1ymCYa-NTh7ystzJ0yL2kfXk2pqVg7Q5fptH1uzEC5lP7ns42rwTdoxYdnLzEtejnzdWlMe6VHUQnL4ZSLMl6E9P-32_TCZ7mWr2TGQM1tvg/s1600/photo+%252862%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4QJJ1BfEjC5TXRako7InsMXjrJNFnMV1ymCYa-NTh7ystzJ0yL2kfXk2pqVg7Q5fptH1uzEC5lP7ns42rwTdoxYdnLzEtejnzdWlMe6VHUQnL4ZSLMl6E9P-32_TCZ7mWr2TGQM1tvg/s1600/photo+%252862%2529.JPG" height="320" width="215" /></a></div>
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Rule #7 And last but not least, the most important rule to keep in mind when you are communicating with people in any way, or when a intercommunication has happened and you feel a bit deflated. Always, always, always remember that you are who you are, and who you are is beautiful and amazing. You are in charge of your own feelings and thoughts. Don't let other people rule you, you get to choose how awesome you are. And when you communicate with people remember that you are awesome in your head and it will come across in your personality while communicating and it will be contagious and people will fall in love with you for all sorts of different relationships.</div>
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Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-68586428077739577422014-06-13T09:23:00.001-04:002014-06-13T09:23:54.473-04:00Technical DifficultiesDue to some technical difficulties, I'm changing the web address of my blog in the next few days. <div><br></div><div>If you come to my blog by typing in the actual address in your web browser please leave me a comment on this post with your email address and I will make sure you are emailed with the new blog address link. </div><div><br></div><div>If you find my blog by clicking the link through either of my Facebook pages, instagr, or twitter those avenues will be automatically updated with the new blog address when I post them, so no need for you to worry! :) </div><div><br></div><div>Thanks to all my faithful readers!</div><div><br></div><div>Sincerely, </div><div><br></div><div>Meggers</div>Meggershttp://www.blogger.com/profile/17688539987583679389noreply@blogger.com0tag:blogger.com,1999:blog-170807854514947077.post-70277766134018669092014-06-09T11:32:00.001-04:002014-06-09T11:32:17.550-04:0020 Life Lessons and Random Thoughts <div dir="ltr" style="text-align: left;" trbidi="on">
20 Random Life Lessons, Thoughts, and Realizations I've Discovered in this Past Week.<br />
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This will be a primarily pictorial blog. With just a small sentence with each picture talking about how it pertains to my life and why I all the sudden thought it was important this past week. As in June 1st-June 8th.<br />
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So here we go!<br />
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1) Sitting outside on the porch, even it's for only 20 minutes, when you are fair skinned and have a boat load of medications that say do not have large amounts of sun exposure. I guess the disclaimer on the meds were correct...haha!<br />
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2) This one is hitting me hard lately. I chose to go back to school to get my dietetics degree, I chose to write a thesis. I did not fully think out the consequences. But, in the end, I think it will be a very good thing. </div>
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3) One of those choices I made was to do a thesis instead of a cumulative exam after all my classes and internship. I'm thinking that was a wrong decision because I often look like this. </div>
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4) Well, I actually look like this. Because all day I live thesis and all night I dream thesis. I can't wait until data collection is done and the final part is written up and I can present to hopefully graduate on time. </div>
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5) All the hard work pays off when I get messages like this from one of my committee members and it just so happens to be the one that specializes in fibromyalgia (which is what my thesis is about).\</div>
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6) Another thing that I am really working on hardcore right now. I want to not be so fulfilled with material possessions and more focused on what good I can do for others and how to be a better me to myself as well. I feel that my gift of sharing my knowledge and my ability to ration my time and activities helps me "be more" which translates into making me into a better person! </div>
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7) I have discovered that I have 2 of these true friends. One especially. She can come over to my house and hangout together and we will both literally end up taking naps but still have the best time. That is such a special bond. I am so glad I have Crystal as a friend.</div>
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8) I love that I also have friends that have been through the thesis process and realize how much of a pain it really is. </div>
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9) I've learned that "Don't Stop Believin'" is pretty much my life moto. I have so many things I want to accomplish in my life, and no is not an option. I believe that these things will come true one day. God's not done with me yet! </div>
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10) I've learned that you need pain to grow. And without pain we will never really know who we truly are because pain changes us and helps us find our identity. </div>
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11) I've learned that even though I make mistakes on a daily basis. Those mistakes are not what define me. I am more than that. </div>
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12) I've learned, or am starting to learn, not to judge anyone (sick or not sick) because I have no idea where they came from. And when I get judged quickly or have my credibility questioned it really makes me mad. So I'm working on not doing that to others. </div>
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13) I've learned to start accepting that my life will never be like it was before ever again, and it's just going to keep getting worse. But who says how my life was before than how my life is now? Who knows which ones better? </div>
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14) I've learned you never know who you are impacting. These are excerpts from a private message from a person in a group that I am in, but I had never had a conversation with her ever. And she sent me the sweetest message. Here are some portions of it because I don't want her identified if other people reading could figure it out. </div>
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15) I seriously, absolutely have no energy what so ever since I've started working on my thesis and I'm doing all of that from my recliner or bed so far. I have no idea how I'm going to start back to in class classes in August. The thought terrifies me.</div>
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16) When your hair is actually done and you go sit outside on the porch and take a selfie with the sun shining just the right way on your red hair and highlights, you actually don't look sick anymore. </div>
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18) Having an IV pole with light up flowers wrapped all around it is much more satisfying and makes it seem not so medical when you are attached to thing all dang day every day and night, unless you are wearing it in your backpack. Yay for flower lights! </div>
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19) Speaking of feeding pump backpacks. I might have an obsession. I've got all these and I still want way more. I mean you have to match with every outfit, right?</div>
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20) And finally, lately I've just been doing everything I can to live my life to the fullest. I don't know how much longer I have (well, none of us do really). But while I'm here I'm taking advantage of living life. You only live once. You don't get a do over. Life life. Don't just lay in bed and cross days off the calendar waiting for your disease to overtake you. Life your life. End of story.</div>
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