This is not the blog post I thought I’d be writing at all. I thought that as far as my health was going, things were getting better. Yes, I’ve been dealing with electrolyte issues lately, but those are minor compared with the prospect of not treating my autoimmune disorder. I had gone to the neurologist last month and she gave me a heavy dose of Prednisone to start with. She wanted to try me on that until this month, and when I went in she was going to start me on immune suppression meds.
This was just all temporary while we hammered out a rheumatologist to see. Neurologists don’t normally treat autoimmune disease, but my autoimmune disease is giving me neurological symptoms and things were getting so bad for me physically that she told me that she was going to treat me in the meantime and Master Pravus and me have been diligently calling around trying to find me a rheumatologist that takes our insurance.
That’s the problem. None of them seem to want to take my insurance. I have state insurance while Master Pravus is on contract, and while we did manage to find a slim handful of nephrologists that could see me, we did not manage to find a rheumatologist that would. The surgeon who put in Gob told me to try the surgeon who is supposed to remove my colon, because that guy has an in with a rheumatologist at his practice who she says does take my insurance.
She says that person is really good and should be able to get my disorder under control so that we can go ahead with my colectomy. We can’t do my colectomy until we get the autoimmune thing under control, and no one else would see me (though we still are calling everyone we can find!) and in the meantime we were grateful to have someone watching out for me and trying to help.
Today I went in, and my neurologist was in a really bad mood. She has been reprimanded from her boss for treating patients (like me) with autoimmune conditions. I’m not the only one she sees, and she’s been helping them all. She’s not allowed to anymore. I completely understand her position, but this puts me (and obviously the other patients too) in a horrible spot. She’s taking me off my prednisone completely (not even a baby dose!) and I start tapering off tomorrow. Thankfully she put me on a slow taper that will take a couple of weeks, but I know I’m going to feel just awful going off of this.
It’s helping me so much, and while life isn’t perfect on Prednisone, it’s the best help I’ve had so far from any med. I’ll have to go back on my Florinef (fuck nooooooo), and I’m going to have to go back to drinking Pedialyte (the news just keeps getting better, doesn’t it??). I have to go back to the nephrologist soon, and I’m going to see my GP and see if SHE can’t get me a rheumatologist referral (even though the neurologist is trying) because in the neurologists words “It can’t hurt!” True. It can’t. We’ve been trying to get this fucking referral since January though and it’s so hard. As if being sick wasn’t hard enough. Tracking down doctors willing to treat you shouldn’t be this hard.
The neurologist was so mad. Obviously not at me, but like I said, I’m not the only patient she’s had to give this speech to in the last month. It’s terrible. I completely understand both sides, but I’m scared for what my life will be like. I’m going to get even sicker and as it is I’m already not doing too well. I just thought I was on the path to getting things under control, and now the rug has been ripped out from under me, and I’m going to get worse again.
I’m not happy at all. I want to be well so badly and if I can never be completely well I think I still deserve the chance to live a more comfortable life than the one I’m living. I think I deserve the chance to be able to cook for myself, and dress myself, and shower without worrying about whether Master Pravus is home or not. I think I deserve a shot at being able to get off the couch before one or two in the afternoon. I think I should be able to go grocery shopping or to socialize with friends. I think I deserve to be able to stay on this medicine which is clearly helping me. Until we find a rheumatologist I can’t though, and I can’t find one yet because getting this referral is just not happening.
So I’m not a happy girl at all. My neurologist is only allowed to treat the migraines I’m having, and I have meds for those now, which is good I guess. She warns me it could be months before it works though. Great. Sounds wonderful.
I left there feeling so dejected and sad. I just want to be better. Why can’t I just find a doctor who is willing to take my insurance? I haven’t had this problem with any other specialty. Rheumatologists are much harder to come by though. I just wish I didn’t find all this out on the night before our long weekend together. We are both so pissed. I think Master Pravus is even more pissed than me. We’re so tired of this run around. For fuck’s sake.