School with POTS & EDS

After writing my first blog post, I felt so great. Finally having an outlet and a place to keep everyone I love informed on my life is fantastic. After giving that post (probably way too much) time to seep in, I’m back and ready to share more. This time I thought I would bring everyone up to speed on my schooling- how I personally am dealing with going to school with chronic illnesses. If you haven’t read my first post- please check it out here!


 

I have always been very driven when it comes to school; I took as many honors classes as I could as soon as I got into middle school, and my sophomore year was no different. Taking away my symptoms, the class load I signed up for was one that I could handle with ease. I’m good with time management, I use every opportunity I can to finish my work- there should’ve been no problem. Unfortunately, my symptoms were very much present, and this load was killing me. I pushed through the year with late nights and lots of stress, and grades that- to me- didn’t show how much energy I was putting into things.  The class load I had signed myself up for my junior year was even worse than the one I had pushed so much to get through- with predictable results: this school year has been harder than any previous school year.

I think the hardest thing I’ve dealt with since being sick is not the pain or fatigue, but it’s trying to deal with the fact that my life is forever changed because of these illnesses. Despite the amazing technology that doctors have access to, and the wonderful advancements they’ve made, finding a cure- or even a reliable treatment- for either of the chronic illnesses I have has just not happened yet. That doesn’t mean I’m not hopeful that they will find one, of course. It just means that right now, this moment, my reality is that I will have these two chronic illnesses and their fun symptoms indefinitely. Dealing with this reality has not been easy, and I’m not sure that even a year after being diagnosed that my mind has fully wrapped around the idea of being “sick forever”. I’m never going to stop looking for answers or ways to find relief, but I am trying to make peace with the way things are now, so I don’t feel stressed and depressed until that day comes that I find more answers.

The main way I have dealt with trying to get myself to adjust to my diagnosis until recently has been to….not deal with it at all.  Up until the past month or so,  I’ve just been ignoring my worsening symptoms and the cries that my body has made for me to make a change. I knew that I could make it through this year, I could pass my difficult classes, I could balance school and theatre and my health. I mean, I COULD do all those things, but I’d sacrifice happiness, and any chance of better health. I have a  great boyfriend, great friends,  a great family, a great artistic outlet. I’m learning to drive, I worked for a while, I’m looking into college…but for things I’ve been excited about since elementary school, I sure wasn’t having any fun. I was torturing myself- trying to live life as if I’m not sick.

Thus, the changes started. After closing our all school musical that I had the privilege of assistant stage managing, the theatre department at my school goes into rehearsal time for our competition play of the year. I was also supposed to be stage managing this show, and I was so excited and ready for diving into more of this amazing position that I have discovered a passion for. But, two weeks ago I stepped down from stage managing this show. I loved every minute of the rehearsals I attended, but I was falling behind on my school work, and I was not taking care of my health, or really myself in general.This  change, although I’m still not happy that it had to happen, has really helped me a lot. I wish that I could be continuing like normal, but I know this was the best decision.

After this, my parents met with my assistant principal at my school to discuss my options as a student with chronic illnesses. Unfortunately, there aren’t many. I can really only control my course load; I can’t take half days of school or get any major extensions on assignments in my harder classes. My parents and I re-evaluated after this meeting, and decided that not only do I need to free up time to do homework, I needed to free up time to work on my health; to delve into taking care of myself and doing everything that I can to make it easier to get through the day. We spoke to my assistant principal again, as well as my counselor, and have changed my schedule to take me out of AP physics, and to put me into Pre-AP, just a level change to save me  some stress. Although not totally thrilled with this change either, I have noticed a significant difference in how I’ve been feeling physically, as well as mentally.

Having time to keep my room clean, to lay around and watch shows, to invest into my relationships, to really be present and enjoying my life as I’m experiencing it is just not worth sacrificing for a class credit on my transcript or a play on my resume. I’m proud of myself for finally having these important realizations about what I need, and  for taking action to make the changes to meet my individual needs. Changes won’t stop here, and hopefully with this extra time I’ll be able to update more on things going on in my life! Thanks so much for reading!

Staying strong, Spoonie Cutie.

 

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The Diagnosis

Hi there! This is my first time writing any sort of blog post in general, and definitely my first time putting out something this long & detailed about my health. I feel it is important to let everyone around me in on this part of my life because of how much it has affected me, and how it is literally constantly on my mind. It has made such a change and such a huge impact on my life, and I hope to shed some light on the very confusing story that is my health.

I started experiencing pretty major fatigue during the summer of 2015. This was the first of many symptoms, but was the most major shift in my health, and still is. I am an extremely motivated student and love a challenge, I’ve always kept all A’s and have taken Pre-AP and AP classes. Once the school year started, the fatigue started to take it’s toll, and was placed at the forefront of my mind. The beginning of coming to terms with this mysterious fatigue was an extremely frustrating process. I didn’t have a diagnosis, and my PCP didn’t seem too concerned at first, so I just put it as “I’m a high school student and high school students are always tired” in my mind and continued to push myself like usual.

The next symptom I encountered was unusual shortness of breath. I had a class on the third floor, which usually wasn’t a problem- I was 15 and in shape-but walking up the stairs and keeping up with my friends suddenly became a major chore. This led to my doctor exploring an asthma diagnosis, despite me not having a tight chest or “attacks” of my shortness of breath. The lack of attacks combined with a good looking lung function test pushed this diagnosis to be thrown out, and I was sent back to the drawing board. My doctor then played with me having Walking Pneumonia, a much more temporary problem, but after being treated for it for a month with no result, that too was thrown out.

It took over 6 months of bouncing around from my PCP to various specialists (Pulmonologist, Cardiologist, Hematologist) to finally land on a diagnosis. I am very lucky to have gotten a diagnosis in this amount of time, though. My mom had been searching for an answer to her (scarily similar) health issues for 10 years previously to mine, motivated by her constant fatigue, and unfortunately has been experiencing symptoms for these syndromes dating back to middle school. Her mom experiences similar symptoms as well, but has gone her whole life without a diagnosis. My sister (age 9) is lucky because she has already started with a diagnosis before her symptoms really start to hit hard, so hopefully through life management she will have even better quality of life.  My hematologist was very helpful, and within about the first 5 minutes of my first appointment, he had diagnosed me and was convinced my mom had the same issues I did, giving us both the answers we had been searching for.

The first of the diagnoses I have been given is Postural Orthostatic Tachycardia Syndrome, an autonomic disorder that causes my heart to freak out any time I decide to move, basically. The transition from laying down to sitting, and from sitting to standing is extremely hard on my body. My heart has to work hard constantly; my hematologist compared the activity of my heart to a person who ran a marathon…just, you know, everyday. This started explaining the fatigue I had previously experienced, and the reason why I got out of breath easily. Another fun trick with POTS is low blood pressure. I can’t stand for extended periods of time without starting to black out, and sometimes it’s so bad I can’t even sit up without feeling lightheaded. Although I had brushed it off previously, this too I was very familiar with. You know when you stand up too fast and you kind of black out for a second? It’s that feeling. Just, every time I move. Or stand still for too long. Or whenever my body feels like killing me a little.

The next diagnosis is Ehlers-Danlos Syndrome Type III, the hyper-mobility type. I always explain this part of things to people like this: All those kids in school who you thought were really cool because they were double jointed? I’m actually cooler than all of them because I’m basically double jointed in EVERY SINGLE ONE OF MY JOINTS. Being this cool comes with a price unfortunately, and that price is extremely debilitating pain. Since I was little I had experienced what my doctors had told me was “growing pains”, which to be fair, I’m sure some of it was, just not now that I’m 17 and have been the same height for the past four years. My joints ache pretty much constantly, I bruise extremely easily because my skin is bendy (stretchy) as well (Take that kid-who-could-dislocate-his-thumb-in-some-strange-way-in-middle-school), and various joints shift and cause even more pain. I’m just full of fun.

As of right now, I go to school full time. I’m in two AP classes, I’m learning to drive, I’m in the varsity theatre class at my school and stay after school until 5:30 or later everyday, and I feel pretty much like I’m dying. I’ve made it through a lot and am still looking for treatment from new doctors, something to give me relief each day. I’ll continue updating with new diagnoses if I begin to add any more fun ones to my collection, and I’ll update with my school habits and treatment as well.

Hope this helped you understand a little more about what the heck is going on with my health!

Staying strong, Spoonie Cutie.

*(For why I call myself “Spoonie Cutie”, visit my “About” Page!)*