Everything Has Beauty

"Everything has beauty, but not everyone can see."

 ~Confucius

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. :)

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. 

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,

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.

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!

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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.

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 DOES 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 HAPPY as a dietetic student, no matter what the situation was, just take a look for yourself.

If we all remember back to last year I got sick during the 3rd semester, so I got the awesome 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.

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). 

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."

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 THIRD time (1 time because of the hospital semester, 2 times this semester, and time 3 IF 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.

I never missed 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 TUBE! 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 20-30 pages 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 every word, while also recording the class to listen to while studying. I made over 650 note cards for just that one class. For every disease I made a flowchart 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 game 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.

 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!" 

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 NO ONE 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 WHOLE person because no one took 2 seconds to stop and ask me WHY 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."

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 everyone else had no trouble finishing,  I'm DIFFERENT...but that would just lead back to the using my disability as a crutch debate so I just said thank you and left. 

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 WANT to succeed without any adaptations or accommodations made for me and just be comfortable knowing that they're there if I need them.  

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 192 symptoms if you compile the symptoms of all the diseases together and I suffer from 135 of them on an at least weekly if not daily basis! Since the time that I re-enrolled in school and started attending January 20, 2012 I have had 45 in town doctors appointments, averaging 1.5 hours, totaling 62.5 hours or 2.6 days. 46 out of town appointments, averaging  5 hours each, totaling 253 hours or 10.54 days. 41 procedures, totaling 331.3 hours or 13.83 days. And 101 infusions, averaging 3.25 hours, totaling 328.25 or 13.68 days.  I have been inpatient 672 hours or 28 days. This totals 1674.05 hours or 68.63 total days spent doing medical things 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 TONS 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 WELL! 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.  

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 NO WAY I could pass the class I kept going and still never missed a day. That takes not only beauty, but integrity.

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. 

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...EVERYTHING HAS BEAUTY!!

And remember: "God made us the WAY HE WANTS US to be. There could NEVER be a more BEAUTIFUL YOU!!! Psalm 139:14

Just One Word Can Change Your Life

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.

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),

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.

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.

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.

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.

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. 

During this week think about some of the stuff I mentioned about mitochondrial disease. Visit the /United Mitochondrial Disease Foundation website or Mito Action's 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!

2014 Edition of 30 Things About My Invisible Illness You May Not Konw

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.

1. The illness(es) I live with is (are) & 2. I was diagnosed with it (them) in the year(s): 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 illnesses--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)
3. But I had symptoms since: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.
4. The biggest adjustment I’ve had to make is: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
5. Most people assume: That I over exaggerate 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.
6. The hardest part about mornings are: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.
7. My favorite medical TV show is: Grey's Anatomy, duh! And House when it's on reruns
8. A gadget I couldn’t live without is: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.
9. The hardest part about nights are: 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.
10. Each day I take 26 medications & vitamins. (No comments, please)
11. Regarding alternative treatments 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.
12. If I had to choose between an invisible illness or visible I would choose: 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. 
13. Regarding working and career: 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. 
14. People would be surprised to know: that sometimes I really am scared of what my life has in store for me...I'm not always positive all the time.
15. The hardest thing to accept about my new reality has been: the isolation, the temptation of food, and the laying in bed all the time because that is all I feel like doing.
16. Something I never thought I could do with my illness that I did was:go hiking on walking trails with my wheelchair for several miles
17. The commercials about my illness: 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.
18. Something I really miss doing since I was diagnosed is: running
19. It was really hard to have to give up: eating real food as my primary source of nutrition
20. A new hobby I have taken up since my diagnosis is:blogging and sewing 
21. If I could have one day of feeling normal again 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
22. My illness has taught me: 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.
23. Want to know a secret? One thing people say that gets under my skin is: '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.
24. But I love it when people: ask me questions about my disease and seem genuinely interested in learning more to understand where I am coming from. 
25. My favorite motto, scripture, quote that gets me through tough times is: "All I need today is a little bit of coffee and a whole lot of Jesus."
26. When someone is diagnosed I’d like to tell them: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. 
27. Something that has surprised me about living with an illness is: 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.
28. The nicest thing someone did for me when I wasn’t feeling well was: 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.
29. I’m involved with Invisible Illness Week because: 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.
30. The fact that you read this list makes me feel: loved :) <3 font="">

Advanced Chronic Illness Seminar: Syllabus, Topics, and Terms

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!.

 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.

Wait, what?

Can I really do that?

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?

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.

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,
debilitating disabilities, let alone add anything else.

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. 

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.

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.

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. 

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. 

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. 

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! 

I hope you enjoyed your crash course in chronic illness living. I also hope you never have to use it! :)

Encouraging Others, Encourages Ourselves

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

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.

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.

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...

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.

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. 

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. 

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. 

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. 

Reflecting on my Roller coaster of a Year!

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.

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.

Basically, this whole year, I learned one really huge lesson with several small lessons kind of branched off from the one big lesson.

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!

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. 

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.

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. 

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). 

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!!

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.

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?

Wards Are Power!

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 It Just Takes One

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:

"The grass withers, the flowers fade, but the Word of tour God will stand forever"
Isaiah 40:8, ESV

"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."
Hebrews 4:12, ESV

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.

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. 

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. 

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. 

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. :)

I love to display the cards in my room, I have 2 special places I display cards right now: 

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. 

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.

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. 

And when I say I keep every card, let me just show you what I mean. I keep every card! 

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. 

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.

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. 

There is only one logical solution to this, it is to: 

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?

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. 

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!