“We’ll get you figured out.”
This is a phrase I’ve heard quite often over the last of a year and a half. I used to believe it was true. I used to put so much faith into that one sentence. I used to think that my issues were so simple; nothing a medication or two couldn’t solve. After a while though, days turned into a few months, a few months turned into several, and now here were are, over a year later and I’m still not fully “figured out.” More of the puzzle has been determined, but I still don’t have all of the missing pieces and at times, it’s so discouraging.
I was in the ER yesterday. I almost made it two whole months without an emergency visit, which would have been a record for me. Sounds silly, but it was really important to me to not end up in the ER for the rest of the year. *sigh* Oh well.
On my way back to the waiting area, the RN who checked my vitals and drew my blood said, “They’ll call you back shortly. We’ll get you figured out, don’t you worry.” I actually laughed a little. Not a loud, but to myself. Obviously, he meant well. After-all, he has no idea about my health saga. He doesn’t know how intricately complicated my story seems to get by the day. But it was in that moment that I realized how desensitized I’ve become to the medical community and how scary that feeling actually is. I hate going to the ER, but because my symptoms mimic that of various life-threatening problems, the one time I choose not to go will most likely end up being a mistake. I sometimes joke that I’ll never know if I’m having a real heart attack, a blood clot, etc. It’s not funny. It’s as scary as hell, but I have to find a way to make some light of it all.
This time, I went in for intense chest pain, a burning sensation within the right side of my inner chest wall and upper-mid back pain. They did a chest X-Ray. Due to my newest diagnosis of Ehlers-Danlos, the ER doctor (who was surprisingly pretty well-versed on POTS and Ehlers-Danlos) was concerned that my aorta looked slightly larger than what it looked like back in January. She worried that I may have a thoracic aortic aneurysm. Thus, they did an MRA and thankfully, my aorta was normal in size and no aneurysm was present 🙏🏻 She couldn’t figure out the source of my pain, but said it could be musculoskeletal or nerve-related. I was just very happy and relieved to know I didn’t have some potentially life-threatening issue with my heart.
And as usual, I didn’t get “figured out.” I’ve often wondered if 8-10 ER visits per year will be what the rest of my life looks like since no one can seem to source these symptoms. POTS causes some forms of chest pain, but again what’s causing POTS? I guess time will tell, right? As I’ve said many times before though, things could always be worse. That was something that was put even more into perspective for me yesterday.