Last week’s neurologist appointment really got in my and Master’s heads. As I mentioned before, we don’t know that I have Lupus for sure (85% chance, though) however we do definitely know beyond the shadow of a doubt that I have some kind of auto-immune disease on top of my Ehlers-Danlos and POTS.
So many things have been swimming in my mind. When I collapsed a few of years ago, doctors drew my blood and checked for electrolytes. Seeing none of my electrolytes off at the time (well, I was anemic and have been dealing with hypokalemia for a while too) they brushed off my problems as having to be a massive POTS attack. Looking back on things though, I’m not so sure that I haven’t been dealing with the auto-immune disorder these past three years. Neither is Master. The neurologist even mentioned it’s possible that since the symptoms can overlap that probably no one checked and that’s a part of why I’m not getting better. Florinef is a pretty “baby” type of steroid. I will probably need “heavier” ones in order to really feel better. Infusions always help with POTS, but they don’t cure it, so all the treatments I’ve gotten in the past few years haven’t addressed the root of my problems, which is why I’ve only been declining slowly with very small breaks from illness here and there.
Over the weekend Master and me were both in a funk. We were sad and upset at this new diagnosis. We knew nothing about Lupus, so we did a lot of research. The research lead us both to be pretty sad about the whole thing. Even if it is not Lupus, many auto-immune diseases share similar treatments. Many of the treatments are scary, but without treatment, Lupus will kill me. There’s no debate. Do the treatments or die.
Thinking about all of that had us both upset. We were scared. We were trying to see if there’s anything we could do in the meantime to try to help. Supplements, etc. It wasn’t an easy weekend on either one of us, but by the end of it, we definitely knew the basics of what we were dealing with, and if you know what’s coming, it helps prepare you a bit more emotionally.
On Monday, I woke up with a sort of epiphany. A weird type of joy. I realized something. Before someone decided they were going to do more in-depth blood work, my future wasn’t looking very good at all. I had accepted the life I’m living which is pretty crappy. I don’t blog all that goes on with my health (If you can believe that! Truly, I only blog the most major of things that happen, because I don’t want to dwell on things or worry people!) and my quality of life is just terrible. For a long time I’ve struggled to do things on my bad days with no help, including getting dressed or showering. That’s not everyday, but at least a few days per week. That’s not a good track record. Things had come to a really horrible place, and I just kind of accepted that. I’ve seen a lot of doctors. A LOT of doctors. I’ve been pushing through because with POTS you’re supposed to keep as active as humanly possible, so that eventually you can rebuild leg muscles and hopefully help the symptoms. I’ve been pushing incredibly hard and have very little to show for it. My epiphany? This has treatments.
Treatments! Are the treatments pleasant? No, for the most part, they are horrible, and only get more horrible with severity of the disease. However, there is treatment, and there is a chance that I can get my auto-immune disease into remission. That would mean less (but not no) medicines, and it would also mean that I could get bits of my life back. Treatment should help every aspect of my life. I’m not saying there’s no drawbacks, but with Ehlers-Danlos Syndrome, there’s no medicine for it. You treat the symptoms of the disease (for example, you can treat gastroparesis, or a dislocated wrist) but you can’t treat the EDS itself so gastroparesis is incurable, and the dislocated wrist has a high chance of reoccurring. With auto-immune disease, I can actually treat the disease itself. Auto-immune diseases are incurable and progressive, however I should still have good days a lot more often once we get it to remission. That’s the hard part but it should be doable. We hope.
So while I’m still not happy about my new disease, I do feel a bit better about it. Treatment is everything. Treatment will show me a better life than the one I’m in right now. It took me four days but, I’ve accepted this. Fuck you, auto-immune disease. You think you can win, but you can’t. I’m gonna kick your ass!