It turns out that DC has THREE KINDS of Medicaid, not one (and no, I'm not confusing this with Medicare). Generally, a person starts with regular Medicaid, then is switched to one of two companies or 'Managed Health Care Systems' that make all the payments. The initial Medicaid is the good one, like a PPO, while the managed systems are like shitty HMOs. Now I started on DC Alliance, which was not Medicaid, it was a city-run program that later turned into Medicaid. The reason it morphed is that under Obamacare, Medicaid is a federal program run by the state but paid for by the federal government, while Alliance had been paid for out of the state's coffers. DC switched early so they could save money... while losing none of their horrible inefficiency.
Now I am on 'Unison Medicaid' (the other is called Charter Medicaid). Turns out the acupuncture treatments I started are only covered by 'real' Medicaid and not the one I have. The clinic made a mistake when they booked my appointment (one which they have thankfully agreed to pay for, considering I've already had two treatments). This is also why the one drug I haven't tried for my condition wasn't approved even though it's on the Medicaid website as something I could take if I didn't respond to other drugs.
The end result is there is one medication which might help -- only I can't get it -- and these acupuncture treatments might help -- only I don't qualify for them either... unless I get put on 'straight Medicaid'. Had a long discussion with public benefits today and there are two ways I can get on Medicaid, which is a) to contract HIV, or b) to be declared permanently disabled. What the fuck? The only way to get treatments to make me better, so that I can possibly go back to work, is to be declared permanently unable to work?!
My doctor had a cancellation so I'm going to talk with her about it tomorrow. But she's not going to go for it. I'm in a low-income clinic with people in wheelchairs with missing legs etc.... no one is going to declare me disabled. I'm young; I don't look disabled. The problem is, I can't work. The polyneuropathy makes it extremely painful to stand for long periods of time, so that takes out a bunch of jobs. And my hands hurt if I spend more than an hour typing, which takes out many of the sit-down jobs I could do. Theoretically, I could find some sort of call-center job, some sit-down job with only minimal typing, but that is about all I'm capable of doing. And that's not accounting for the periodic bouts of horrible fatigue, or the fact I'm constantly pulling muscles out of whack.
I'm still hanging onto the volunteer work, the idea I can be a productive member of society. It's only occasional work, so I've been managing so far to keep on top of things. I feel like this is giving up, but I don't see what other choice I have. I don't FEEL disabled, but then again I don't know what/if disabled is supposed to feel any different. I mean, it certainly seems harder for me to do things that other people can manage without pain, fatigue, and discomfort. Is that disabled? If you have to pee every hour because your bladder nerves are damaged, can't stand up too fast because it makes you dizzy, find standing (and sometimes sitting up) for periods of time painful, and can't stare at a computer screen for any length of time because it makes your eyes hurt (I developed dry eyes after I got sick)... are those things being disabled? Is tingling/numbness in your hands and legs, with throbbing pain when you lay down to sleep, hallmarks of a disability? I feel like a disability should equal pain CONSTANTLY, not just whenever you try to accomplish tasks. When I'm just laying on the couch watching movies, I'm fine (and laying, because even sitting on the couch can become uncomfortable).
I've also got the wheels churning at the behavioral health clinic for my depression and new compulsive behaviors. I have a much better chance of being declared 'crazy, depressed and disabled' (and for those who don't believe me, check out my last post -- I sound nuts even to myself). I feel like I can't live with this anymore.
It speaks volumes how upset I am. I wrote this long post, typed rather, with my back screaming and my hands throbbing. And now it's time to go back to the couch. :(