doctor appiontment comming up, getting nervous

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Oct 5, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Do you know how I get through most of my days? I pretend that I'm not sick. I pretend I'm on a vacation and all I have to do is relax and enjoy the peace and quiet. This helps to keep me balanced and grateful for what I have.

    Now I have an ND appointment comming up, and now I'm starting to feel discontent with my situation. I'm in the zero to ten range of function for people with CFS. It's a wonder that I can type here sometimes, since I can't even read children's books most days. It's very hard to endure the DD without being able to read to pass the time.

    I'm trying to figure out what symptom to ask for help with. I would really like to be able to read. Also, I'm tense and depressed and frustrated and trapped feeling (duh, housebound and bedridden!). My memory doesn't work well. The sensory overload is so severe that I can't talk to my own family a lot of the time and I have to close my eyes if I see them moving around in the house. I'm not sure what foods I can and can't have. The fatigue is so bad and restrictive that I try not to think about it and the things it keeps me from doing.

    I phoned a couple of people today. One was a young woman who's going to be setting her wedding date soon. Another is a man who's the son of a friend of mine, and he's back from doing volunteer work in South America. He's going to be the best man at his cousin's wedding this weekend, and he was watching Star Wars and getting a gift ready. I called an old friend from my hometown, and that reminded me of how I used to go fossil hunting near Bull River Dam. I feel better knowing that things are going okay for other people. I phone folks every day and try to cheer them up and listen. It takes my mind off myself.

    But now my mind is back on my situation because I have to prepare for this appointment. It's a little scary remembering that I wear pajamas all day long and that I'm too ill to get a haircut. I can't even think well enough to decide what kind of haircut I want, let alone sit up for it! I don't mind saying this becuase it's been said before by folks here, but I'm among the most disabled people who are able to take advantage of this website.

    Another worry about this phone appointment with the ND is that we will be discussing the results of a new kind of test that I've never had done before. My ND is highly qualified (and legit) and just completed a course on voice analysis as a diagnostic tool. She's having trouble figuring out my readings. "Complicated" was the word used. I don't know if that's becuase she's not used to this technology yet, or [gulp] because my body is not an easy one to help and to figure out. She'll e-mail the recording to the instructor to analyze it if it's too hard for her to figure out. I understand that the treatment involves using sound waves. It's occured to me that I may not be able to do such a treatment becuause of my noise intollerance.

    You've all been wonderful in listening when I told you about all the doctors I've been to. In my journal today, I said it was like I'm going to see the Wizard of Oz, except that I keep seeing him again and again, and he doesn't have anything in his bag for me. :( lol It wouldn't sting so much if I didn't know that we keep working with the top doctors in TWO countries on the problem. The times when I take my limits for granted and don't struggle against this illness are the times that I feel almost at peace. The times when I feel sicker, I feel worse emotionally and it's hard to endure the days. And when I'm about to have an appointment of some kind, I just don't know WHAT'S going to hit me. That's the worst.

    In some things, I think this doc has been helpful so far. It's hard to tell, because I don't have a memory. (Sometimes I'm afraid I'll contradict myself when I write about how I'm doing, because how I'm doing is kind of changeable and I don't remember how I was yesterday or last week and so on and I can't guess how I'll be tomorrow.) Some of the treatments that she has reccomended I've been unable to do or have reacted badly to. It makes no sense, but I see these times as personal failures. I've been blamed for this disease so much that I blame myself sometimes too.

    I'm trying to hold off on the self-pity and not to let my mood get too low this week, since I'm struggling with depression at this time. That's something I can ask for help with, anyway. All in all, I can't bear to think about my health problems. Many people have it worse than me. And getting down about this illness makes everything seem worse.

    Thanks for sticking with my ramble tonight. Prickles said the nicest thing to me. She said, 'Maybe this doctor will be the one who breaks out of the mold and turns out to be really great.' I don't know if I will get better or get sicker, but as long as this one treats me with decency and doesn't blame me for being sick, I think it will be okay. And as long as I can endure this disease every day, I count that as winning.
    (( )) Shannon
  2. Shannonsparkles

    Shannonsparkles New Member

    :) Good to hear from you!

    I don't remember when I last saw this ND. I think it must have been at least two months ago for that first appointment. It went well. She did this test to see which of my fruit crate full of suppliments I needed and which ones I didn't need. That's saved me a lot of expense and gagging already. :)

    You were right. She did treat me better than all the others have. She didn't seem to be judging me.

    Dad saw my ND today for some treatment for his neck trauma, and she told him some stuff about how the analysis is going. He told me about it before he went to bed tonight. I don't remember what he said (he talked too fast and it was technical), but it sounded like there was reason to be hopeful that this will help. He looks optimistic. And I found out that she's done it with about 30 patients already, so I'm NOT the test run after all! I think he said that the sound waves used for treatment are inaudible, so it might not bother me.

    I feel a lot better just getting to write about this sort of thing here. Thanks for your prayers, Prickles. I really appreciate it. Is your flare going away? Is it getting easier to sit at the lectures? Are they in English? I like your spunk and how you keep on fighting for awareness. :)

    Hmmmm... for some little things to appreciate, did you ever notice how garbage men have good muscles? And how great those little gold leaves look when they've fallen on grass that's still green? Those are the Calgary perks this week. Someone across the street tried to rake their leaves, but the tree just dumped a huge load of them again the next day, so the lawn looked as fine as ever.

    Thanks for the support. Keep us updated on all the haps where you are?
    ((love & ty)) Shannon (who keeps bouncing back with help)
    [This Message was Edited on 10/06/2006]
  3. alaska3355

    alaska3355 New Member

    I hope and pray this doctor can make a difference in your life so you can quit pretending it and really live it.....Terri
  4. NyroFan

    NyroFan New Member


    It is so nice to know you can phone friends during the day.
    It must give you a real good feeling.

    I understand your plight. I go through days like that also.
    I never was a tv watcher, but since I am a day trader I keep CNBC on. I only work about five hours a day, but the little bit that I make helps with the bills.

    It also passes the time. Like you, there are days when any move or sound can bother me. And yes, it gets depressing.

    You sound like you are getting on the best you can and that you have a positive attitude with your doc and treatment.

    If i were you I would not push too much. All any of us can do is just do the best we can on a daily basis.

    Good luck with the appointment. I will be thinking of you.

  5. Shannonsparkles

    Shannonsparkles New Member

    Thank goodness THAT's over with! I had the appointment earlier today. I don't remember really anything. We found some defficiencies in something... see? Just gone. So the doc clued in to how I wasn't remembering or understanding even the last thing she said, so she's just going to e-mail me the results and reccomendations. That'll be a LOT better, just reading it. And then I'll have more time to think about it and figure out any questions I need to ask.

    I was so zapped (no more than usual) that I actually lost the ability to speak near the end of the call for awhile. It's happened to me a few times before when there was too much information comming in at once to process it all or I was totally exhausted.

    I really hope I can get better and not just have to pretend. Thanks, Terri & all. Prickles, I wish I was meeting all those people you are! I'm so used to meeting people over the phone that if someone asks me what I look like, I think, "That's a strange thing to ask!" because I don't know what half the people I talk to look like. lol I would love to SEE some new faces. :) If you put a picture in your bio of where you are, it would be like you sent us all a post card. And I'd love to see your new hair.

    Time to rest.
    ((love you all)) Shannon
  6. mrdad

    mrdad New Member

    On an unrelated topic, I replied to a post you addressed
    to MRDAD regarding your interest in Antiques etc. I re-
    ply in lenght but don't think you saw it even though I
    bumped it several times. May want to look on my Bio. pg,
    or yours and pull it back up.

    Hope you and Bro. are doing well! Will get back to you
    later, "K"?
    P.S. Shannon, I just went back and read your Post.
    I would like to respond to you tomorrow
    when I am fresh(??) Prickles is younger than
    you and is such a great source of friendship
    info, and support for you! It's great!!! [This Message was Edited on 10/11/2006]
  7. Shannonsparkles

    Shannonsparkles New Member

    Have you considered one of those pine tree car air fresheners to put around your neck? If only alertness were so easy to come by as those tacky little things are! lol

    It's been a stressful day (though less so than some) so I expect to be up for awhile yet. One good thing about feeling inches away from the wolf's jaws is being perked up enough to do a little writing. I answered your post earlier today. :)

    Hope to sleep sometime in the A.M. today. Dawn is too far away to aim for. I've seen so many brilliant dawns with this DD. :)

    HUGGLES to you too!
    (( )) Shannon
    [This Message was Edited on 10/12/2006]
  8. Shannonsparkles

    Shannonsparkles New Member

    I'll know more when the doc e-mails me the test results. She did mention something about supplimenting something. And something about advancing in 'little steps' which is fine by me. I'll just let the rose-colored brainfog blot out the rest for now.

    I'm so GLAD (grateful, relieved, happy) that you're feeling better! And you're 21. :) That's the same age as my brothers. You turned 21 in Germany. Now there's a good story. :) I turned 21 in Kansas. I didn't take advantage of my legal ability to drink booze at the time. I'd planned to take my folks to a karaoke bar when I turned legal, but the DD canceled that plan. And, anyway, I'd alreay turned 19 in Canada, so I'd had the karaoke fun there before.

    Are you taking lots of pictures? What are your classes there again? Hope you stay warm enough. Do you have a lot of obnoxious roomates there too?

    ((warm hugs!)) Shannon
  9. Shannonsparkles

    Shannonsparkles New Member

    Thanks for the very appreciated pat on the back and the "daily basis" advice. I'm curious: what is a nyro? :) I clicked your bio, but it's all blank! How mysterious! ;)

    Sorry for all the repliers I didn't mention by name. Thanks to all of you.

    ((zzzzz getting sleepier!)) Shannon
  10. mrdad

    mrdad New Member

    So sorry I had to cut my message short last night as I
    just "burned out"! I'm glad that ya found the Porch this
    morning as I have already seen your message. The fellow
    "Porchies" gave you a nice and friendly welcome as one
    would only expect to get from them!

    So happy that you got thru that Doc appt.! The worst part
    is always the apprehension. Gotta do a blood draw (1 pt.)
    on Sat. morn and all toll it's about a 2-3 hour procedure!
    But luckily, the Nurses are REAL pretty so that is at
    least some incentive to get their! One is just as beau-
    tiful as Fredericka or Venessa Williams! I try to hang
    around as long as I can! (Unless Notre Dame is playin'

    Is it getting cool in Calgary? It's 'posta be 70 here to
    day, but this is our very best weather time of the year!
    Gonna meet my best looking Son for lunch-brunch a bit
    later. I'm fortunate to have him living across Town
    about 20 mins. on the Bus. It's a small City area wise!

    Do ya go on E-bay or Craigslist to look at Antiques and
    collectibles? Even if your not buying, it's interesting
    to look and ya learn a lot also!

    Glad I caught up wiff ya this A.M. I'm thinkin' that I'll
    buy one of those "stick-up" freshioner's that I can just
    stick to my forehead to stay fresh an ward-off the brane
    frog thing!

    [This Message was Edited on 10/12/2006]
  11. mrdad

    mrdad New Member

    Thanks! MRDAD
  12. Scapper

    Scapper New Member

    I'm keeping you in my prayers!!!!

    I feel hopeful that this new N.D. is going to be able to help you :) We all know how much you deserve some improvement!!!

    Hang in there and thanks for updating :)