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About jimells

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    Northern Maine
  1. Thankyou for the link. I will definitely study that info. I like your approach. I realize of course how easy it is to damage their delicate egos. It's a shame, really, that an informed patient is perceived as a threat. But when all they want to do is try to sell me colonoscopies and PSA tests while ignoring the fact that my life is wrecked, well, it's hard to bite my tongue.
  2. Two weeks ago I saw a rheumatologist. It was a seven-hour round trip drive to watch the doctor spend 20 minutes typing into his computer. Then he handed me a stack of lab orders and practically pushed me out the door. The physical exam lasted about two minutes: he watched me raise my arms. I had to check to see if I was in a doctor's office or on an assembly line. Still not sure which one it was. So anyway I finally talked to the doctor's assistant today. None of the tests show anything. I was told to see a neurologist -- it was a neuro who sent me to the rheumatologist ("I can't help you ...
  3. I recall trying some homeopathic something or other a few years ago. It was a waste of money. Recently I heard a report that homeopathic only works on people who believe in it. That leaves me out. Is there any truth to the rebound headache stuff? A few years ago a 'specialist' wrote in her report that I had rebound headaches. And the evidence? I had denied having rebound headaches, so that proved that I had them. Nice logic. Her recommendation was that I should take nothing for the migraines. Real useful.
  4. Fictitious, I grew up in Derry. I don't go there anymore - it's a bit crowded for me... You have every reason to be grouchy. The medical industry in this country is completely dysfunctional. It occurs to me that when someone with a serious chronic illness actually gets better, it's an accident! I tried to get help at UMass Worcester. It's likely the neuro I saw once might have actually helped me, but the institution is absolutely impossible to deal with. After a year I am still fighting to get charity care to cover all the bill. I needed my records, it took a month to get them, and they came w
  5. Thanks for the help, Toddm. The answer I'm looking for right now is, "Where the Heck is the neuro referral you promised me??" Erik, is it ever not hot in Hawaii?
  6. Well I did the test last night and the meter said 83. This was after fasting about 10 hours. According to Wikipedia, it's supposed to be 70 - 100 after 12 hours. I ate a banana right after the test - it sure tasted good. The technology of those little meters is amazing. I don't understand why they don't use them in the doctor's office instead of ordering an expensive blood draw and expensive hospital lab tests. I probably just saved the State of Maine $150 by doing it myself. If the doctors keep after me about my blood sugar, I will get one of those machines. They used to lecture me about my
  7. I too spend hours a day laying down with my eyes closed. I listen to the radio. Fortunately, I live next to Canada, so I can receive CBC Radio One - with no ads (yea!) and no ads from non-profits telling us they still haven't found "the causes of homelessness" (double yea!)
  8. Hi Todd, How does one get a diagnosis of mitochondrial dysfunction? What kind of doctor does that, what kind of tests might they do? Overwhelming fatigue, as in, "I'm too worn out to work anymore today", is my worst complaint. As opposed to overwhelming drowsiness, which I have some days, but not every day. And course, how could I forget the migraines. But the constant fatigue, never feeling rested, is the worst. Your post was very helpful. Thanks for writing it.
  9. Bending over really gets me too, especially when I have to clean the bathrooms at work. I use a broom as little as possible. I prefer old-fashioned style cannister vacuums to those ridiculous clunky uprights all the stores are pushing. Some of the Sears models have a foot-operated quick-release so I can remove the carpet head without bending over. It's a really nice feature. I agree with the other folks here that a 10 year old is plenty old enough to help his poor sick ma keep the house clean. I remember washing dishes when I was so little I had to stand on a stool to reach the sink. He shoul
  10. This is a real interesting thread. I've never thought about blood sugar at all until the PCP told me last week that recent blood tests showed slightly high blood sugar and I'm supposed to get a fasting glucose test. But I have to drive 100 miles round trip to get the test, and I don't have gas money to drive that far. I can barely get up in the morning, even with coffee and a light breakfast, so I don't see how I can go all night without eating, then safely drive more than an hour to get blood drawn. It sounds like most POTS people have low blood sugar - am I reading this right? Or is it more
  11. I tried Provigil once. It didn't help the faitgue, but it did give me insomnia!
  12. I have my own "family" now, one that is not related by blood. It's a few friends that understand when I have to back out of gigs at the last minute. It's hard to find people like that, but they are worth their weight in gold when I do. The worst family member to deal with is my own former partner of seven years, who walked out a week before Christmas last year. When she left, I had no money, little fuel oil, and the electricity was about to be shut off. The Salvation Army bought me some oil, and after six weeks the state sent me a food stamp card. For part of the winter I was dumpster-diving f
  13. I suffered through a "mostly sleepless" study two weeks ago and finally got the results yesterday. I shouldn't have bothered, since they didn't tell me anything I didn't already know. My "diagnosis" is "primary snoring" even though the observation was "occasional to intermittent mild snoring". A diagnosis of non-restorative sleep would have been useful, since that would be medical evidence that I'm sick, and not just a slacker, which of course is what Social Security Disability alleges. I only slept 203 minutes that night, since they made me get up at 6:00 AM, two hours before my normal risin
  14. "Basically I go through life just scraping by. I don't have energy any more." Boy does that sound familiar. Most of the stuff I used to do, I can't do anymore, or I can just barely do, like holding down a 10 - 15 hour per week church janitor job. It's not enough to pay the bills, so they'll not getting paid. I went to the food stamp office on Dec 16th and applied. The nice lady said the computer won't let them make changes after the middle of the month (I was already in the computer), so I couldn't get food stamps. I guess we don't need to eat after the 15th. Now that it's the third of the mo
  15. I used Imitrex for a few years, but I've given up on it. It only helped about half the time. When I have a bad migraine, I'm down for the count for the day anyway, so what's the point of a twenty-dollar pill that I can no longer afford? Even when the Imitrex would work for the head pain, I still felt awful, so no, I can't say that it helped any other symptoms.
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