good afternoon, all --
i'm hoping it's not the flu -- don't think it is, because i don't feel *that* bad -- but i woke up with a fever, swollen neck glands, a sore throat, no voice, and a barking cough. bark bark! woof! oddly enough, i feel better emotionally -- and i know why, and the reason is absolutely pitiful:
i have an excuse for taking a "slug" day!
i did manage to get up and do the "morning chores" (doesn't it sound like i live on a farm?), and am back in bed, sipping on a great cup of coffee. i think it is great -- my taste buds are on vacation. whatever -- it is strong, the way i like it. all of the cats are with me, and i am occasionally pressed into play mode by dobby, who has gathered three of his balls on the bed... he likes to play fetch. weird cat. at least i am making headway with his mother -- marmy is decidedly more friendly these days. she must have led a harrowing existence when she lived on the streets. i will never be able to get the picture of her big old dirty pregnant self out of my mind! she is so tiny -- i don't know how she managed. (yes, i do -- hank, her hero, came along!)
have i ever mentioned how stupid and chatty i get with a fever????
i need to say something, and i need someone to hear me. over the weekend, i fell into despair. i spent most of friday and saturday researching the ketamine coma treatment, reading scientific stuff, pseudo-scientific stuff, watching videos, reading blogs, etc. it hit me saturday night that i don't fit the profile for a coma treatment. i have significant health problems that preceded crps/rsd; my immune system sucks; i do not have a real support system; and i am not independently wealthy...
it started as something nagging a corner of my consciousness -- there was something awfully similar about all the case reports (case reports and anecdote are all they have as "data" right now, because so few have done it, and because the fda won't approve the treatment -- they won't approve any coma treatment that goes beyond 2 days. go figure...). anyway. long story, short: i don't qualify for the ketamine protocol.
i will still seek an evaluation, either from dr. kirkpatrick in tampa, or dr. schwartzman in philadelphia. for some reason, over the weekend i came to prefer dr. s. -- he is head of neurology at drexel univ. college of medicine. dr. k. is more properly a pain management doctor -- with a background in anesthesia. he is sometimes over the top in his methods, though -- or so it seems to me. sometimes his passion is a turn-off. it comes through in minor things -- like insisting that patients travel by "air ambulance," stuff like that. he also comes close, i think, to burning some bridges to the more conservative members of academic medicine. blah blah blah.
who has a spare $50,000+ burning a hole in their pocket, anyway? i think that figure is probably on the low side -- *every* story that i read had unforeseen complications that required longer hospitalization, a longer stay for the families, etc. of course, most of the families had "resources" above and beyond their strong love and support.
aw, crap. never mind. jealousy will get me nowhere! the pictures of family standing behind these pretty, healthy-looking, tan, and smiling young girls -- are very touching. and it is clear that people with significant comorbidities, beyond a certain age, and with full body crps, don't qualify! i mean, even these relatively healthy candidates came down with pneumonia on the third or fourth day of coma... and emerged from the experience too weak to talk, unable to sit up (much less, walk!), and terrified from ketamine hallucinations. needless to say, i probably would croak.
okay, i am done!
becky, i am so glad your retreat was fulfilling and fun -- aside from the fruit fiasco. and i hope you get your electrolytes under control. ummmm, have you been doing too much, too soon? hmmm? smooches!
dianah, i have to confess that i don't understand your roomies' mindset at all. why in the world would he hit on your mother for money? are they that desperate? the whole situation must be driving you nuts... there have been a few times when hank and i were looking at pretty empty bank accounts -- and, in addition to going out and making money the old-fashioned way, we absolutely lived within our means. we still do -- sometimes to a frustrating point! it sounds like they don't get the concept! still, i hope you can salvage your friendship -- is that going to be possible? and, hey, how are *you*? does warmer weather help reduce your pain any? my crps has a cold weather and a warm weather "persona" -- in cool/cold weather, my extremities are usually shrunken, blue, ice cold; in warm/hot weather, they are swollen, bright red, hot. the pain doesn't change, though! except that in the warmer months, with all the swelling, it is easier for hands and feet to get bumped or brushed up on stuff -- causing more pain. total weirdness. how is your friend's husband -- who was burned and life-flghted? how terrible...
ms. lashy! i was, like everyone, thrilled to see your post! the changes you mention -- yes, ma'am -- they need to be made, else you are just going to drop from CHF and fatigue. and you know what a vicious cycle that is -- my last big experience with it, i was teaching full time, going to grad school, and still working at the homeless shelter -- even with my lungs gurgling and my ankles the size of texas... you must get lot of rest. as much as you help everyone else, it is time for everyone else to help YOU.
hey, becca! shoot... i am running out of steam! i hope you feel better soon -- oh, and how cool that you are going to see jacob. valentine's day, at long last!
hullos to maggie, debbie, pickles, morgan, karin, laura, melanie... EVERYONE!
and hello to all the newcomers, i hope you will all stick around and share what you know, and just socialize a little, too. if you are out there lurking -- come on in, the water is fine!
love,
prof
love,
