Vocational rehab will pay for a course so I can do medical transcription at home--while electronic medical records will eventually make this obsolete, for now there's still some demand and this will work for now (my sister's providing advice and help). This is something I can do to help with money; I can put in as much work as my disability will (or won't) allow without having to worry about losing a job or moving in and out of the workforce. I can take time off and do my other work, do more or less according to whether my husband has work and how much it pays. This also gives me some flexibility in terms of other life decisions, whether we have to move, etc. And it means not changing up our children's lives radically, paying for childcare or having them come home alone (my elementary school child is not mature enough for that). I don't have to worry about missing work because of medical appointments--I will have flexibility. Just as importantly, vocational rehab will also pay the coinsurance on a wheelchair or different wheelchair cushion. So I'm working on getting all of this set up.
Rheumatologist #1 thinks I may have had GB, that the symptoms match up and says that nerve damage to small nerve fibers might not show up, plus yes, people recover. But he also thinks I should give Enbrel a try, so I'm kind of mystified by the phone call the other day, unless he changed his mind because of my level of disability or thinks I really want it. I asked questions but I'm not sure they got answered, and I wasn't feeling well, though he spent a lot of time. Frankly, I'm confused. But regardless, I'll be putting off the Enbrel, because you can't use it presurgery and...
Now I have to have surgery next week. It's not optional, and it scares me witless because I tend to bleed thanks to the connective tissue issues. I called for an appointment Wednesday, had the appointment today, surgery will be set up Monday, sono on Tuesday, all lab work forwarded, surgery on Thursday or Friday, early the next week if there's any impediment, she'll work around our schedule. Not happy about this one at all. The doctor emphasized to my husband it's absolutely not optional but it has to be done even if we have to get a different doctor because of insurance (not sure of coverage). I can't possibly convey how much I hate this and yes, she reminded me I should have had this done years ago. Because of the bone/hip issues/possible labral tear the anesthesiologist won't give me Versed--that means the doctor can position me without harming me, but she warned me the prep is going to awful and since I freak out anyway, I think I'm starting to hyperventilate already and I think we can all see why I've postponed this nine years.
Wednesday I meet with the PM&R doctor and hope that he can help give some advice. The wheelchair provider has changed and I don't think these people know what they're doing, unlike the last woman. The woman on the phone said if I just need a cushion, they can just order that when I asked about fitting. Uh, no, tried that. I don't know the DME market and while I'm an expert on how things need to work for me, I don't know what products are available or how they all fit together. It sounds closer to direct sales with limited providers of wheelchairs and no real PT/OT. I think I need a wheelchair seating expert/clinic as an objective third party.
And so, I'd like to write about bio"ethicist" Peter Singer's lovely little essay in the NYT but haven't been able to bring myself to write about someone who thinks our quality of life is so bad we should just die so other, more healthy people can get surgeries because of their minor inconveniences.
I have written up much of a post on JFK's disability but haven't finished it yet. My body keeps getting in the way of cerebral issues right now. I hate my life right now but *that is temporary* and will be better in a few weeks. I am so angry about Peter Singer that I can't even think straight. My husband asked if Singer's going to have Kevorkian on speed dial when he gets infirm or disabled.