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!)*