Help?
I have done this so many times on different social media platforms, desperately reaching out for someone to help pull me out of a hole, and it has never once in my life 1) worked or even 2) resulted in any kind of forward progress but why not keep trying? That makes sense.
So I am still super sick. That means: every day I get up (around 6 AM) and by noon I am so nauseated, exhausted, hot but not sweating, terrible headaches, and just generally feeling so awful, that I have to lay down horizontal, and I am useless the rest of the day, and am lucky to be able to get out of bed for dinner. This happens every day, like clockwork. Every 1-2 weeks, it gets worse and I have a day or two in a row where it’s the same deal but I throw up a ton too. It is horrible, unspeakable torture to experience these episodes, and it is miserable every day to feel so awful that I can’t do anything but lay in bed in front of a fan. I feel awful every day. Any kind of activity makes it worse; I go walking at the park every day (to find the bugs!) and as great it is for my mental health I feel like dog shit afterwards. I feel like I am literally being tortured, I don’t say that lightly.
I can’t get anywhere with doctors. My GP sent me out to specialists, but they basically run a normal blood panel and then tell me I’m fine; there’s not much investigation. Obviously I am not fine. There’s also a tendency to focus on particular symptoms and try to treat those individually, but I strongly believe this is one syndrome and all the symptoms are related. I have a short list of things I want to test for but it has been grueling and tiring trying to convince doctors to do these tests. Everybody wants to argue with me about what I think it is, but no one really offers any theories of their own. It’s all on me. I am so tired. I don’t have the energy to advocate for myself. Just going to appointments and tests wipes me out for the entire day—literally, it takes up the entire morning which is the only time I can be upright, and then it makes me even more exhausted and I feel worse the rest of the day.
I strongly suspect some kind of hormone-based daily process is out of wack; I also suspect POTS or some form of dysautonomia but I have not been tested formally and I cannot find a doctor who specializes in it; I have been referred to a doctor in the Raleigh area that has a super long wait list and not great reviews. I did the at-home POTS test and got a positive result.
Anyway, that is where I am. Obviously with a schedule like this, such a small window of time to be upright, I am struggling to even be a person, much less an artist. It is so hard to stay on top of everything that has to be done and I fail at that every day.
I am posting this on the miniscule off chance that someone reads this and actually has a lead that can help me. I described what I am dealing with above. This is the rest of my diagnoses:
Crohn’s disease
Asthma
Venous malformations (I think these are related to whatever is going on/making it worse)
Kidney stones
Hysterectomy at age 30 for fibroids
If you know a doctor familiar with POTS, dysautonomia, or anything that sounds like what I am dealing with, or if you have helpful information that could help point me in the right direction, please send me a message through the contact page. I do have insurance currently (through the ACA) but it will change next year.
