Tuesday, December 30, 2014

Everything Has Beauty

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

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!


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