The Unknown- Diagnoses and My Life

After finishing my freshman year of college, living through a blood clot and starting to get my migraines under control, I was feeling pretty great about my life and how different everything was from the last 2 and a half years. Yet when I went to go see my rheumatologist for a follow up when I got back home, I left that visit feeling just as confused and burdened as I had when I first got my diagnoses of chronic migraines. When I started this “journey,” no one knew what was wrong with me. I was poked and prodded by doctors and needles trying to figure out why I wasn’t a textbook case of migraines and why I was having neurological issues. It was confusing, every time we thought that we had found a solution, however temporary it may have been, something happened that then changed the effectiveness. For example, my body gets used to medications very quickly, so every 6 months to a year I’ve had to change dosages or medications in order to attempt to keep me stable.

I’ve thought a lot about the word “stable.” What does it actually mean? To me, it means that I can live my life to the fullest extent. A year ago, “stable” meant that I could walk at my high school graduation. Now, it means that I can live my life despite the migraines, blood clots and various other medical problems that I experience. My idea of what stability is may be completely different from yours, but it is important to think about this and decide what stability means to you.

Coming out of my rheumatologist’s office, I wanted to break down and cry. I couldn’t tell whether it was from relief or from how scared I was. She was hypothesizing that I may have Undifferentiated Connective Tissue Disease, a term that describes certain lab test results that look like a systemic autoimmune disorder or connective tissue disease. However, the characteristics that are used to define auto-immune disorders and connective tissue diseases are not well-defined enough to fall into one well-defined diagnosis like lupus and rheumatoid arthritis.

While my doctor was talking about referrals, possible medications and more labs, my head was swirling around with emotions and questions. At first, I was so shocked that all I could say was, “But I thought that we ruled out Lupus?” We did, but I did have an elevated ANA, so the UCTD could be a precursor to Lupus.

“Oh,” I thought. Well I guess that makes sense, and I had an ER scare a couple months ago that confirmed that I had Reynaud’s, which also fits with this diagnosis. As I started to do more research, I realized that this diagnosis could actually fit with many of my symptoms, like the extreme fatigue, that had stumped so many of my doctors.

As relieved as I was that there was a possible name to the medical insanity that I had been through, I also realized that there was also the possibility that this would not be a correct diagnosis. I was entering into the “unknown,” one of my worst fears. Navigating medical issues that are not textbook is difficult, because it means bearing the burden of information while also trying to keep your emotions at bay.  I’ve learned that I have to be my best advocate, to remind doctors of the specifics, in order to get the best care possible. No matter how much I try to keep myself rational, I need to allow myself to feel my emotions. The “unknown” is scary, especially when you feel like everything has just started to fall into place. I joke with my friends that it’s not my life unless something is going on, which is a sad truth. Luckily, I have my friends and my family who support me. When I’m in these periods where I don’t know what is going on, whether my blood clot was due to my birth control or whether there’s a larger issue at play, or I’ve had multiple migraines and can’t function, I have people who will help me, no questions asked. That’s the only way that I’ve been able to get through this whole ordeal. As I’m about to embark on another journey into the unknown, I like to think of myself as The Starship Enterprise, venturing into unknown territory. Somehow, I’ll always come back to Earth, slightly banged up but okay.

As always, have a lovely, migraine-free week!