Discussion in 'Chit Chat' started by Rafiki, May 16, 2009.

  1. Rafiki

    Rafiki New Member

    I read a post of yours describing your illness, just a little. I meant to reply at that time but ran out of steam. Now, I can't find it! Anyway, I totally respect your decision to share as much or as little as you see fit but, if it would not make you uncomfortable, it may help people to share information about a rare disorder which shares much with ME/CFS.

    There may be someone on the board who has been misdiagnosed with ME/CFS who actually suffers from the same illness as you. It would not be the first time that someone with a rare disorder has rescued another member from diagnostic purgatory with their story.

    Of course, please do this only if you are comfortable doing so.

    Thanks for your consideration.

    Peace to you,
  2. Pippi1313

    Pippi1313 New Member

    I thought about that. My disease is often misdiagnosed as something else.

    The only reason I hesitate to say what it is, is because peeps will do the same thing I'd do. I'd immediately begin researching it online.
    That's the problem.
    There are sites that claim expertise on the subject, but they're dead wrong!
    False "information" bestowed upon us by "experts" is a VERY dangerous thing!

    My doc-team, PCP, neuro, & hemo are amazed at the crap-ola found online.
    Honestly Rafiki, most of those sites seem to be written by peeps who have ZERO experience with the disease.

    My docs readily admit there is very little known about the disorder.
    They know how to prevent death, during a crisis phase. Beyond that, we're all stumbling about in the dark.

    They can't tell me what to expect long-term.

    There aren't any studies being done either.

    One thing I can say, is one of the first symptoms is a rapid onset of paralysis (usually ascending). Not severe weakness, but actual paralysis.
    We can recover from that, if appropriate measures are taken. The subsequent weakness & pain & such, are side-effects/relapses of the disease.

    These things we try to manage. But so far, no cure.

    The bottom line is: Incorrect information is way more dangerous than NO information! That's why I'm so cautious about calling my disease by name.

    The doctors' creed is: "Do no harm". (Which is freakin LAUGHABLE!!!!)
    But I feel a real responsibility to "do no harm".

    Hope the explanation helps!!!
  3. Rafiki

    Rafiki New Member

    Darling SJ! How wonderful to run into you, almost! I just posted right after Springwater on another thread. I've been dragging in a serious way and miss you both!!!

    As I asked Pippi (Hi Pippi!) if she wanted to share, I thought of you and your situation. I think the only reason anyone might treat you differently, SJ, is because of your extreme lovability! MWA!

    Pippi, SJ makes some good points. We are a pretty savvy bunch, for the most part. Yes, every once in a while, one of us goes running off in all directions -- I did when diaguessed with MS -- but we calm down again. I guess you have to weigh the potential for good against the potential damage. And, of course, your own personal needs.

    Peace out,
  4. Pippi1313

    Pippi1313 New Member

    I do agree with ya! If I EVER discover a site that has the correct info re my disease, I'll IMMEDIATELY let everybody know!

    A little more about it:
    If I have a specific med-crisis, and IF I get to a hospital in time, they know how to intervene & keep me alive. IF someone is there who can speak for me & tell them what they're dealing with...
    The rest of it, we manage as best we can.

    Sometimes, I hear my elderly neighbors complain about how hard it is, with everything they have to deal with. At those times, I'm thinking silently: "If ONLY! If ONLY! If ONLY! I wanna get to BE an old person too!!!".

    So - As soon as I find a source of accurate info, I WILL share it!!!
  5. Rafiki

    Rafiki New Member

    You really must get a Medic Alert bracelet!!! Seriously ~ your survival should not depend on a person being there to explain.

    peace out,
  6. Granniluvsu

    Granniluvsu Well-Known Member

    Yes, Rafiki is right you should get a med bracelet. Oh these young people !!

    My son years ago started with epilepsy , just before he was to go off to college. Boy, between being a young person and a young MAN I think he didn't want to wear a med alert necklace. The idea also of taking meds for the rest of his life was not pleasing either. I think he aldo didn''t take his meds a few times and then had GM seizures. Trying to tell him that if he had these seizures with no one around they might think he was just drunk or on the wrong kind of meds. I think he has gotten better but still not sure he is wearing his necklace.

    That is just a very scary thing to have a medical problem that you need to tell someone about if you have some kind of crisis, and you may not be concious enough to tell them. That could literaly be a life saver.

    Hope you will get a bracelet one of these days soon, my dear !!

    BTW, I am so sorry to hear about both of your "different diseases"-Sac and Pippi. I know I try to look on the positive side of things and remember that there are also many others worse off than I.

    "Granni(MOM)" like I used to sign my name to another young Porchie Jodie who used to be here.
    [This Message was Edited on 05/18/2009]
  7. Pippi1313

    Pippi1313 New Member

    You're right. I should get a medic-alert bracelet, so I will. (Can't stand a necklace.)

    I have to go google that & see how it works. I know they come with common diseases already imprinted on them. I'll have to see how (&how much $$$) to get a special order.

    Odd... Nobody ever suggested this before!

    Thanx! :)
  8. Rafiki

    Rafiki New Member

    Great suggestions ~ for many of us!

    You're so smart!

    with metta,
  9. Pippi1313

    Pippi1313 New Member

    I don't drive, cuz I can get sick very quickly & I just think it wouldn't be safe. The way I see it, I don't have the right to put people in danger just cuz I wanna drive.
    I do have a drivers' license, tho. I guess the state thinks it's OK, but I disagree.
    Besides, I don't really need a car. I can ride the city bus just about anywhere I wanna go - even when I'm in the wheelchair. & it only costs 75 cents! Transfers are free, so I can run several errands & get back home on the original 75 cents. Pretty good deal, huh?

    I sorta live alone.
    I say "sorta" cuz I do have my own apartment, but Mom, Pop, & all 5 bros are just a few minutes away from me.
    I see the 'rents a few times a week, & we check in via the phone on the other days.
    Also, my apartment has "panic buttons". I can pull a cord & alert security that I'm having an emergency.
    We also have floor-monitors, for peeps who need them. I'm fortunate enough to have family watching out for me, but many of my neighbors don't have anybody. The floor-monitors will knock on their door every day just to check & make sure they're OK.
    The neighbors here all watch out for each other, too. We'll alert security and/or a floor-monitor if we think someone should be checked up on.

    I designated one of my bros as my legal health care surrogate.
    I didn't designate Mom or Pop for that cuz if something REALLY serious happens... Well... I'd never want my parents to have to make a pull-the-plug kinda decision.

    I do everything I can, to prevent my parents from worrying about me. Of course, they do anyway, but I try to lessen their worry as much as possible.
    I know what it's like to worry. Pop had a heart attack a few years ago. I was never so terrified in my life! And I felt SO helpless!!!
    He's fine now, thank God. But Mom has to constantly fuss at him, to stay on his heart-healthy diet! LOL!

    And I WILL be getting a medic-alert bracelet!!!!!!!!!

    Once, when I took a long trip by myself, I used a "sharpie" marker & wrote my SS number & the 'rents phone number several places on my body! I only wrote where my clothes would cover it, of course. Each foot, each leg, both upper arms (short sleeves covered that), & I even wrote it on my stomach!
    I figured, if I got sick, & got seperated from my backpack, EMS could still ID me & call the 'rents.