Josi (O-Josi-O) (eris_devotee) wrote,
Josi (O-Josi-O)

I've never been this pissed off in my life. And it's all the time.

Tomorrow I jump through another hoop just to see if insurance will pay for the one and only medication that has even the remotest possibility of preventing the flares that could lead to me waking up blind.

It's fucking ridiculous. I have 2 diseases that would benefit from my being on rituximab, and 3 separate top-of-their-fields specialists have stated they've never encountered anyone with such a damaging, non-stop, every symptom on the extreme end of things, case of Grave's disease. What more do they need? I just found out it might not ever get completely out of trials for Grave's because they've taken the research as far as they need to make credible medical claims and the rest of the process for the FDA to make in an on-label use might not be worth it financially.

And in the meantime, I have minor flares at least monthly. My only option to keep it all under control is prednisone and I've been taking so much for so long that the side effects are building up and causing new medical issues.

I just had so much hope for my last eye surgery and I feel betrayed... by nothing I can point at except all of it.

But tomorrow I see the head of endocrinology who is supposed to have conferenced with my other docs plus the head of rheumatology and he'll let me know if they think they have a strategy that will lead to me getting rituximab. And I have to put aside any anger, because I need these docs to go above and beyond and that's more likely if they like me. But my last several appointments I haven't been able to maintain my usual dark cheer, and instead have been complaining, irritated... a bad patient.

And I'm really over having strings of nightmares and stress dreams every night.

Another surgery in December. Then another 3 months later. Then at least one more after that. This feeling isn't going anywhere. They've all but admitted that they will not, after all, be able to restore my eyesight to non-visually-impaired. Better than it is right now - most probably - but good enough to ride a bike... ehhh, well, let's wait and see (hahaha).

I'll get through this because that's what will happen through no effort or fault of my own.
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