Friday, July 17, 2009

Just more updates and another, umm... surgery

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.


yanub said...

I'm in a happy place, happy place, happy place.... Oh, crap. You brought up Pete Singer. Good-bye happy place. These people who are so bent on reducing the lives of anyone who isn't them to an intellectual problem fail completely to understand why utilitarianism can only be a method and never a goal. If utility and cost/benefit analysis were to be generally applied to the human race, we would all have been smothered at birth. Yet, I don't see Singer volunteering to personally remove himself from the economic burden we humans inflict on the ecosphere or even just each other. This business that we can't afford to be egalitarian and generous and decent when economic times are tight is an argument based on hidden lies and viciousness. It is precisely when times are hard that we all need to be the kindest. To be kind only when it is easy is not to be kind at all. And if we are not kind, then, truly, we have lost ourselves as people. Singer's rationalizing of rationing is just more of the same from him.

Happy place, happy place, happy place....

Boo hiss to unexpected surgery. I know there are people who jump into any surgery that anyone wearing a stethoscope suggests, but, like you, I can see little benefit to having a gaping wound added to my other problems when there is no guarantee of a decent outcome. So, for you to be agreeing to this now, I know it must really be needed and that it will be a benefit. May your medical team be well rested and on the ball.

Medical transcription sounds like a pretty good idea. Would you be contracting with a company that handles that sort of thing, and getting your work through the mail or FedEx or whatnot? I've often wondered how that part works.

Thanks for the update, Frida. I appreciate your taking the time to keep your online friends informed as to how you are.

FridaWrites said...

You're up late, too!

He is moving to a Nazi kind of agenda and the concern is that he will attempt to get others to follow him.

Yes, it's ironic for someone so opposed to surgeries and procedures (me) to be having so many of them. This one I have no question about right now, no question. I really trust this particular doctor a lot!

Not sure how they send out the files--I've heard some places send voice files over, and yes, it would be getting work from a company. I'll be finding out more detail this week.

Thanks for saying that--it's difficult to write about personal medical issues on a blog, though all regular readers I know about are friends.

yanub said...

I don't think there is any doubt that others will follow him. In fact, I think he is the one doing the following, providing cover as governments and businesses slash monies set aside for social needs. In every state, disability assistance has been first on the chopping block. Oh, the politicos cry crocodile tears about how much they don't want to do this and have no choice, but they aren't chopping their own salaries and benefits, they aren't cutting funds for roadwork or vanity projects or even closing down offices one day a week to save on fuel and maintenance costs. In other words, they are lying. They never cared to begin with, and the first chance they get to be the bastards they always were, they take. And Singer comes along after them and spins a tale of how hard their decisions are and what a sad lot they have what with having do make the hard choices for all us little silly heads out here in silly head land and aren't we glad that we have such courageous leaders and doctors and what? But, you know, Frida, if Singer wasn't the one playing the violin at the gates of the gas chamber, they'd just hire a different virtuoso.

Yeah, I'm up late. I should probably have been good and made an effort at going to sleep, but when else do I get to be on the internet unmolested by robo-phone calls, bible pounding door-to-door solicitors, or the guilty siren call of Things Which Must Be Attended?

Please, always say how things are going for you, to the extent that you feel comfortable. If you want to talk privately, well, that works too.

FridaWrites said...

I think you're very right. A lot of states are cutting transportation, people can't get wheelchairs or in-home care (the compassion argument doesn't work for a lot of people, but it's also less expensive)... In his heart, he's not a liberal but a conservative concerned that someone's getting something he's not or taking from his pockets, directly or indirectly. I also wonder if he doesn't have medical/disability phobias.

The call of the internet is indeed most clear late at night, when one can read without interruption...I'm an inveterate night owl, especially with early morning arthritis pain, but society and the school year generally pushes me to an earlier bedtime.

Lene Andersen said...

I hear you on the surgery avoidance. I'd rather eat nails than go there again. I'll be thinking of you - hope everything goes well.

Hadn't heard of Peter Singer, but now I feel compelled to read the piece. I'll let you know if it gives me an apoplexy.

FridaWrites said...

Thank you, Lene--yeah, me too!