Sunday, May 17, 2015

Five Minute Friday (on a Sunday): Follow

I'm joining the Five Minute Friday 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.

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...

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 follow.
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It's really interesting, no coincidental, no God's perfect timing that the word this week is follow.

If you know me in real life or through Facebook, you know I've just come through the HARDEST month in my life by far...and let's just say I did not exactly come out gun's a blazin'.

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.

But alas, as you can tell, I made it through just fine, Or so the doctors say.


In reality, my whole life fell apart.


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,


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?"

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 ABYSS. I am DROWNING. And I'm not gonna lie about it, or hold it back, because I feel it's imperative that I tell the truth. 


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 LEAN IN to God when it seems so impossible right now.

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 some income besides my disability). And I think these positive thoughts are coming to my head because I am trying, at least attempting a little to FOLLOW 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.

Tuesday, April 7, 2015

Health Activist Awareness Month Again...Wordless Wednesday

Hey Y'all,

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.

So here we go!

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!







Saturday, March 7, 2015

Broken Halleljuah

***Disclaimer: This blog will contain the lyrics to the song "Broken Hallelujah" by The Afters 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.****

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 my 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.

"I can barely stand right now.
Everything is crashing down,
And I wonder where you are."

I have friends that are going through impossible 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.

"I try to find the words to pray
I don't always know what to say, 
But You're the one that can hear my heart."

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.

"You know the things that have brought me here.
You know the story of every tear.
'Cause You've been here from the very start."

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.

"Even though I don't know what your plan is,
I know you're making beauty from these ashes."

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. 

"I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah."

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 empty self to God. And keep believing He is holding me, wrapped up tight, in the palm of His hand.

"With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah."

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.

"When all is taken away, don't let my heart be changed.
Let me always sing Hallelujah.
When I feel afraid, don't let my hope be erased.
Let me always sing Hallelujah."

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.

"I will always sing.
Here's my Broken hallelujah."






Friday, January 2, 2015

2015: A Year of Beautiful Redemption

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.

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.

Even if i try to live this way for the whole year, it is still not always NEVER 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.

This year though, I need to have two words. It's what I've been feeling. It is clear to me.

You see I never really pick my word, my word picks me.  Every year.

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 BEAUTIFUL REDEMPTION, as best I can that is.


Redemption is defined as: the act of making something better or more acceptable; the act, process, or an instance of redeeming. 

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.

After what happened with school, we all know that I have some things that I want redemption for. 

Enough said.

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. 

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. 


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.  

Lately, I've been stuck on this word beauty.  

What does it mean to have beauty? 

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.  

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 perfect wig that is. 

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. 

But then that is when you I have to remember that the definition of beauty talks more about qualities than aesthetics and it makes it all alright. 

I've realized that again, by sharing my passion and purpose I am beautiful. 

I have since come to love the phrase "Be your own kind of beautiful," because everyone has something beautiful about them.


Each day this year, I resolve, no, intend to remember everyday that I am living a year of BEAUTIFUL REDEMPTION

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. 



Tuesday, December 30, 2014

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

Monday, September 15, 2014

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!


Sunday, September 14, 2014

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="">