Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Apr 30, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Kholmes, how are you lately?

    I wanted to thank you again for the picture games. It was fun guessing where the shots were taken, and they were very beautiful pictures.

    (( )) Shannon :)
  2. Shannonsparkles

    Shannonsparkles New Member

  3. rockgor

    rockgor Well-Known Member

    break in the daily routine.
  4. kholmes

    kholmes New Member

    I've got a nasty headache tonight, always a sign that I've overdone a bit, but I'm doing okay, thanks.

    Your posts have been a lot of fun, lately, too.

    Hey, I had an idea last night. What do you think of starting a CFS/Fibro book club? I don't mean a club in which board members read books about CFS, but each month or so, we'd choose a book that's readily available on Amazon or at the library, read it, and we discuss it on this site. The chat makes me too tired, so I was thinking of just doing posts on it. We could read short, easy books like the ones you read, or one like the book you read on the Holocaust, or mysteries or nonfiction, too. Nothing gargantuan or mentally taxing like Anna Karenina...
    I was thinking about posting about this some time this week.

    By the way, how are you doing?
    With your great spirit, you've been one of my heroes lately.

  5. Shannonsparkles

    Shannonsparkles New Member

    Something funny happened today. Actually, it made me pretty mad.

    Yesterday I told dad that I can't walk much anymore, and sometimes I can't walk at all (had to get little brother to carry me to the bathroom) and he got really sad and looked like he was gonna cry. Then he jumped up like he'd been sitting on a hot poker and dialed up my old doctor from the clinic I started out with in Oregon.

    The doc said it sounds like I have Wilson's thyroid syndrome. Says it's fixable, but it will get worse if I don't start taking cytomel, a T3 suppliment, and something else. My old doc from Kelowna should be able to help me get started, as I understand it. My brain is completely mush now, and I'm trying to become an overnight expert on everything thyroid, because I always have to make informed decisions.

    I had some thyroid-affecting amino acids left over in the Box of No Returns (the place where I keep partly used bottles of pills that I can't get a refund on), so the doc advised me to start taking a lot of them twice a day till I can get cytomel. I've been anxious and angry and getting palpitations shortly after I take the dose, but then I'm okay later At least I know it's doing something. ;)

    I still don't believe I can get better!!!!!!!!! Good doctors have cried wolf on me so many times and told me to 'pick up my cot and walk' because 'I'm healed!' so many times that I just don't believe them anymore. It's not a matter of hope or possibilities. It's a matter of how much of a chump I'm going to be and how much stress I'm going to feel through the ups and downs of the treatments I try. Caution and forethought are where I work from now. Show me results, and I'll show you a lady who knows how to work with what she's got.

    Anyway, dad got me a pity present today: an ice cream machine. I couldn't possibly tell him that it was about the dumbest thing anyone could give me. (Well, once he gave me one of those foot-high fancy dolls that had the creepiest vacant glass stare. It gave me the willies so bad that I couldn't be in the same room with it.) I shouldn't eat ice cream or sweets or a lot of fruit even, I'm sensitive to cold and get a chill easilly, I think I can't eat cream, I can't stand up to cook... There's just so many things wrong with this thing.

    I didn't have the heart to ask him to take it back. Wish I did. It's something I dreamed about having back when I wasn't sick, but it's almost an irony to get it now. And the money could have gone to buying me the pajamas I asked for, or paying for pills etc. He gets me the wierdest things when he's feeling sorry for me.

    Sorry for the grouchiness. Any time someone tells me I can get better, I go through the grieving emotions: denial, anger, fear, etc... And I can blame the pills too now for some of the mood stuff. :)

    Thanks for the compliments. I don't know exactly what I did to get them. I respect you and look up to you. And you answered that grammer question for me too! I've been thinking of getting a grammer book to help me iron some things out. I sometimes feel a little self-concious knowing there is at least one Engligh teacher lurking in the cyber-shadows. ;)

    Speaking of books, hmmmm... I wonder how the book club would work out. I agree, nothing too heavy. Did you ever watch the old Batman show with Adam West? Once Batman was attacked in a library by the Bookworm, who was trying to stab him. Batman shielded himself with a thick book, and the knife got stuck in it halfway through. Surprised, Batman looked at the title and quipped, "Nobody gets through War and Peace!" lolol

    My high school librarian told me she would throw a party for me if I ever finished the unabridged Don Quixote. And, dispite a 40 minute bus ride every day, I never did! The Count of Monte Cristo remains a romantic and over-the-top favorite for me though. But I can't read long sentances anymore.

    I might like to give the book club a try. I have difficulty reading, so something with a simpler writing style would be good at present. Did you have a book in mind? Maybe we could have a thread announcing the upcomming book club and asking people to suggest titles. :) Then you can pick one. I don't know if you've tried it before, but the Barnes and Noble website will give a quick thumbnail review to describe any you haven't read.

    I'm getting woozy, so I'd better take a break to consume another hapless sea creature. Do you ever feel a little sorry for the animals you eat? I suppose that fish have had a pretty full life. And my chicken was free-range. What do you think of a thread to suggest book titles?

    Gotta go. (((kholmes & family))) Shannon
  6. Shannonsparkles

    Shannonsparkles New Member

    Sending soothing thoughts... ahhhhhhhhhh! ;) lol

    What were you working on to start the headache?

    Okay, I'm REALLY going to go eat something now! Thanks for refreshing the board with your fun posts!
    (((ahhhhhhhhh!)) Shannon
  7. kholmes

    kholmes New Member

    I think my headache was from calling up The Standard, the insurance company that is reviewing my disability claim. I'm having to gather more evidence in support of my claim. This is very hard, since like most CFSers, my blood tests don't show any major problems. In my rejection letter, The Standard claims that CFS is highly questionable, that it's extremely unlikely that I cannot keep teaching, and that my doctor is basically a quack. They also question why I've never had a psychological evaluation.

    An ice cream machine? Probably not what you need, eh?
    My step-sister, though she loves me and means well, thinks I should be riding daily on an indoor exercise bicycle, in order to clean out my lymph system. This, despite my telling her that I can only walk about thirty feet, sitting up for a long time is near impossible, and I need a wheelchair to go anywhere. Right now, peddling on a bicycle of any kind would probably put me in a hospital. Sometimes people who love us just aren't thinking straight about what we need.

    Have you been tested for any thyroid problems in the past? Dr. Teitlebaum often recommends Armour Thyroid and the like for CFS patients, even if their blood tests show no thyroid problems. I hope they are finding something that will help you. I like to remain cautiously optimistic, but I've been through so many treatments that I have an "I'll believe it when I see it" approach. I've been taking DPowers to task over his glowing claims about the Petrovic protocol lately (if you'v seen any of his posts). It costs around 3 grand, from what I've heard.

    I like your idea about asking what book suggestions people have. I was thinking about listing a few that I plan to read in the next few months. People may be too tired or busy or just not interested and that would be okay. I want to keep this very laid back.

    I hope you're having a good day.


  8. kholmes

    kholmes New Member

  9. Shannonsparkles

    Shannonsparkles New Member

    Oh, K, that's deffinately not for you! If she really means well, ask her to pay for a lymph drainage massage. ;)

    Today's been relatively good. Still taking the aminos, but I haven't gotten palpitations today. Energy the same, but maybe a little less fog? Hard to tell, and I don't want to get excited too quickly.

    I did get some thyroid testing done at FFC, and they advised me to see a specialist. I had to wait six months while getting sicker and sicker, then when the appointment came up I knew I couldn't tollerate the car ride, sitting up in the wheelchair and going through a noisy, fumey hospital.

    So I arranged a phone appointment with the thyroid specialist for starters, figuring the doc would order more tests based on what I told him, so I'd be getting things moving without damaging myself. I sent him all my past lab work, history, everything, and prepared thoroughly what I would say and which tests I would request and what I would ask for.

    The thyroid specialist called my DAD instead of me, several hours later than the appointment was scheduled for. He said that he couldn't tell anything from the lab tests we had given him alone. Duh, he was supposed to interview me, not call my dad! Then he ordered some TSH tests, which are basically worthless for any diagnostic purpose. Worse yet, he sent the test requests to my CFS specialist, who hasn't done anything about it, instead of sending it to mobile lab. Everybody goofed. And I'm not sure what to do next. Thinking is not my forte.

    Sorry about your disability request. Is there any way to make them see reason? If they respect the CDC, they shouldn't think that CFS is a questionable diagnosis. But I guess they're trying to hold onto funds. Do you think you will need a lawyer? That's all enough to give anyone a headache. Sorry they are making a battle of this. :(

    I look forward to reading the book thread. Good to keep it laid back. I'd better go lie back down myself.
    (( )) Shannon

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