My brain is on overload. I just can’t handle it anymore. There are too many decisions to be made and too many variables to consider. My cognitive function is much better than it was a year ago, but still not where I should be.
Now, never mind the “little” decisions, like whether to visit someone who was with X yesterday, and last night X came down with norovirus, so the person I want to visit may or may not have been infected. Or the fact that my eyeballs hurt, and that could have been from rubbing them too much (the air is so dry here) or it could be a symptom of one of the major eye illnesses I’m that could be a side affect of the Prednisone and/or Plaquenil I’ve taken over the years, so maybe I should see the eye doctor even though I just saw him recently. Let’s ignore those “easier” decisions right now.
The more complicated issue is the medication that my insurance won’t cover. I could pay out of pocket. It’s too much money, but then, everything is too much right now. I could see my doctor, who has an opening today, to discuss other meds. But we’ve already sort of discussed those, and he didn’t think they were good options – that’s why he prescribed this one! I could try one of the supplements from my naturopath, but she admits dosing will be difficult at first, so that could be unpleasant for a while. Doing nothing isn’t an option, thanks to the bad symptoms. Of course, in 3 weeks I find out about the disability insurance appeal. If I win the appeal, then I get my old health insurance back and I lose this insurance, and the old insurance will cover this drug. Then again, if I lose the appeal, I’ll be stuck with this insurance indefinitely (depending on medicaid, but I’ll get to that) and so I’ll need a solution.
And tied into that is state medicaid. I was denied for it, and I appealed that denial. A hearing date for the appeal was set, and it happens to be just a couple of weeks before I’ll find out about the disability insurance appeal. If the disability insurance is instated, then I get my old health insurance back and I’m not eligible for medicaid. But if I lose the appeal, I might need medicaid. Then again, I have no idea if medicaid is better than what I have now, because no one will tell me what it covers. The price can’t be better (I have no premiums now and almost no copays) but maybe it would cover that med or other things that my current insurance won’t cover.
So how do I make this decision? My doctor has an opening in 4 hours. Technically, there’s no cost because insurance covers it. But there’s the emotion toll, especially of having to deal with a doctor who’s derisive towards the other treatments I’m pursuing, not to mention who will probably tell me that the insurance-covered options suck. Then there’s the energy I’d have to expend to get there and back. And the time and gas to drive 30 minutes there and one hour back to get home during rush hour, thanks to the timing of that opening. It probably won’t help. But can I afford to not pursue a potentially viable option?
And what about that medicaid hearing? Should I spend many hours and a lot of cognitive effort to read 150 pages of case notes, including hardly legible HANDWRITTEN (!) notes (do they realize we’re in the 21st century now?) in order to prepare for the hearing, in order to fight for insurance that may not be better than what I have and that I may not be be eligible for in a few weeks? And do I want to put myself through the hell of trying to prove how sick I really am to people who want to insist I should be well enough to work, just because my previous jobs were “sedentary” and they don’t seem to understand that even a “sedentary” job requires being alert, walking to the bathroom, walking to get water or food, and of course getting up early every day, getting dressed, and commuting. Then again, medicaid could be my best option.
I want to tear my hair out (if only my hair wasn’t so thin already from my illness.) These decisions are too hard, especially for someone who is emotionally involved and cognitively not at 100%. It’s too much. It’s just too damn much.
I saw in reading election coverage that there is a problem with “decision fatigue” and it sounds like you have it for sure. Are there people anywhere who act as health navigators? Because it sounds like you need some help.
What a circular route it sounds like you must take. Are there any “patient experts” in your state who can give you some insight? Good luck with all of it
Yes, there are definitely “experts” who can help, mostly through the insurance companies (from what I’ve seen.) After some bad experiences, though, I just don’t trust that they’ll give me the best advice. Thankfully, I have great parents and close friends who let me bounce thoughts and ideas off of them. I still have to be the one to make the final decision, but it definitely helps!
Gosh, maybe you should talk to a legal advisor? There has to be someone who specializes in this stuff. I know there are patient advocacy programs in my area, maybe you could call one around you?
Hmm, I hadn’t thought of that Rachel. I’ll have to look into it – thanks!