16 june 2009
scramble for an md: urgent care nightmare.
the first bit here (down to the thank you) is what i had prepared when i went to urgent care. the second (down to my ride) is what i typed while there. the third (down to what is) is both what i hand wrote there and further thoughts the next day or so.
hello, i'm ken oster. recently, both my partner (laura) and my case supervisor at mrdd (dori) have called on my behalf, seeking an md to fill out a med evaluation for me, so we can get rolling with my waiver for assistants. we're soon running out of time, with a june 25 deadline.
my md passed away just over a year ago, and i'm now happily seeing an amish healer, but this form requires an md. i brought my records from my previous doctor, in case that helps. i will, however, need those back before i leave today.
laura mentioned to me a $95 fee for this, but dori did not. i have both medicare and medicaid, and i'm prepared to pay. either way is fine with me.
thank you!
i can write and hear and understand fine, just can't talk. brain injury (ataxia) 26 years ago, makes me like someone with cerebral palsy. all that should be required is a little patience. i'm very pleasant.
my return ride comes between 1-1:30.
dr. morgan asked if i had a barium swallow study done. i nodded, then wrote him the following.
my last barium swallow study was probably 20 years ago. they wanted to do another in fall 2006 when i got pneumonia, but i refused because i had just spent over $3k getting rid of such heavy metals. now, however, i'm not so opposed to the test: whatever helps.
i cringed with my newfound compliance, as i wrote that last sentence. was it too much information? would he use it against me and demand that i play hardball also? well, that's just what he did. he handed my med eval back and said he'd sign it only after he sees the beryum swallow results.
i don't know what he hopes to prove by this. perhaps so he can recommend i get a g-tube. that won't happen until i've exhausted every natural means of getting nutrients. soft food and juicing. i've already tried the ensure route (1992-96). sure, eating was easier when all i had to do was down a can or two of ensure plus. medicaid even paid for two cases per month throughout 1992. but it filled me with chemicals, from which i later had to detox. i've seen what g-tube patients get fed and am not anxious to repeat that detox process again,
bottom line is that i know what's going on with my body, and i'm comfortable keeping such knowledge to myself, out of reach of "professionals" who want to medicalize me. i was proud of my feat in 2006, until i saw the report from that hospital about a year ago. evidently, my silence gave the staff there reason to treat me as an inferior: something, again, i didn't see at the time, but laura did. no wonder she was always livid when there.
thinking back, i wish i would've done the test in 2006. that way, dr. bharwaj could've dismissed all this g-tube nonsense, and we'd be set. but, deal with what is.
24 june 2009
a barium tinted failure.
the barium swallow study was very artificial. first, i was fed a small spoonful of barium applesauce, and the first alarm came when i had trouble closing my mouth around it. after about 30 seconds or so of me just sitting agape, the speech pathologist feeding me said, "i'm just going to put it on your tongue." still, i had trouble getting it down because the amount was so small--i take big bites and am never fed. next the third artificiality occurred when i was told to sip the watery barium. i did, and again had trouble getting it down, because the amount was so small. in at least 25 years, i never sip, i chug. that's what works for me.
the doctor performing the barium test asked me if i cough a lot when i eat/drink. i just do what i do and had never really thought about it, so i said "sometimes." during the test i suppressed my cough as long as i could, thinking that was expected, but when i finally did, the barium had already been going down the wrong tube for a few seconds, so he said "you're aspirating, and just now, you cough? such a delay is an invitation to pneumonia." that felt like a set up. afterwards, i observed my meals with new eyes, and yes, i cough a lot, unless i'm trying to be polite.
anyway, at that point he said i need a g tube. i said no way, not until i've exhausted every natural means of dealing with this. he quipped that i probably had, and then asked for my partner's number right away. he left the room again and i had no idea what was going on, even when he came back and said, "alright, i think we're done." like an idiot, i left there beaming, with no shortage of "thank you" signs. relieved to be done with a year long process, i was happy until i got home and checked i.m. there, laura told me that he'd be recommending a g tube. i was crushed. what i thought was the last step to get the waiver, was actually the first step to get medicalized.
during their phone conversation laura told me that "I told the doc at good sam that the assistant is our solution to your nutritional deficiency, not a g tube. I told him you have difficulty swallowing that makes you uncomfortable, but not sick." i'm very thankful she had the presence of mind to say what i couldn't. nonetheless, had i seen there what was happening, i would have said, "think about what you're condemning me to: with the md who passed away, i spent over $6000 getting a healthy gut flora--he made it so my body could actually metabolize over 120 foods that i had been allergic to--and you want to invasively introduce a foreign object to this gut and just hope my body won't reject it, all based on an artificial test and what you think my body weight should be? i've never ever been more than a tall drink of water. all my life. even before my accident, 26 years ago. this is quite appalling, especially when there are many natural therapies to get my tongue working."
after reading about the procedure, all the maintenance, cleaning, risk of infection and all the highly processed chemicals to be dumped into my body through it, i was abysmally depressed. i got the feeling like i did in 2002, when a doctor at drake prescribed me antidepressants to help me sleep, "they're not really for that, but in low doses, i think they'll help." i read up on them and figured i need all the brain cells i can keep: my mind was all i could truly call my own, so no thanks. it felt then, as it does now, that if i go with what the doctor says, i'd be opening a door that i couldn't get back through, that i'd enter a much darker world.
experientially, i know mouth massage helps and i know a turbo-sonic (whole body vibration therapy) helps. perhaps i could try and combine them, intensively, over the next 6 months. if i'm not better by then, i'll consider the g tube.
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