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  • Anonymous
      Post count: 93172

      whoops. theres my email address

      Anonymous
        Post count: 93172

        Sue,

        I tried to e-mail you, but address was n/a. I know some of what you’re
        going through, at least some of the Graves’ stuff. It’s maddening to
        try and explain this disease to people who’ve never heard of it. If
        they have, they’re just as likely to say, “Oh my, aren’t you lucky.
        You can eat whatever you want.” (wasn’t true in my case–gained
        17lbs when hyper).

        I don’t know much about the eye disease first-hand, but if you read this
        board, there are a lot of people dealing with this problem. I’m 41, but
        there are a couple of 20 something folks on this group. Losing a baby
        at seven months must be heartbreaking, whether it’s caused by Graves’ or
        anything else. I don’t know if you’re getting therapy or not, but I would
        advise it, if possible. You’ve got a lot of grief to deal with in addition
        to the emotional roller coaster Graves’ can put you on.

        Better days are coming,

        Linda Thompson

        Anonymous
          Post count: 93172

          I hope im doing this right.
          My name is Sue Kopp. I have had Graves disease since October 1995.
          (not exactly two years but it seems like eternity!)
          My eyes are poking out of my head like those cartoon characters.
          I lost a baby due to this in February of 1996 at 7 months pregnant.
          The docs want me to get radioactive idodine treatment. I dont want it.
          Everyone i know that had Graves disease was cured in the 1950’s.
          I wasnt a twinkle in my mothers eye then. I’m 20 years old.
          And noone seems to know what im going through. They pass it off as
          just something that happenes to everyone. Docs give me 5 years to live.
          I’m taking my PTU like a good girl but im limited as to what i can do.
          Of course my friends dont like that part and neither does my husband.
          Is someone out there that can whack me with some good sense so i can
          start being cured or helped or getting my eyes back into my sockets?
          All i need is someone who knows what im going through. Its a lonely
          world out there. Especially when docs stop short of a hospital room
          door and says “Oh geesh! You have a bad case of Graves disease!” as if
          i didnt already know that. If anyone is out there….could you please
          drop down a rope to the bottom of this cave im in? i cant seem to get
          out of it. Thank you for whoever is reading this.
          Faith and Honour
          Sue

          Anonymous
            Post count: 93172

            You should really try getting the RAI. It should make you feel better, if the meds aren’t. I knwo how you feel about the eye thing. I remember last year someone saying to my fiance, “How can you date Robin when she has such ugly eyes?” Lucky for me he told her love isn’t about looks. I hated my driver’s license picture because everytime I wrte a check or got a new job, everyone would laugh and say, “God your eyes look weird; what did you do?!” I don’t kknow anyone in person who has had Graves Disease. Whenever I say it has been the reason for alot of my problems in the past (severe depression, attempted suicide, apathy for the world, doing stupid things, memory problems, getting sick alot, etc) alot of people say, “Can’t you take responsibility for your actions? I hate people like you who blame their problems on medical things!” Keep your chin up, Sue. There is a whole BB full of people here who have been there! I’m always around if you need to vent!

            Anonymous
              Post count: 93172

              One of my best friends from the internet met me and said WOW Your eyes are beautiful!
              after taking his temperature i understood that beauty is in the eyes of the
              beholder. I dont know if the meds are working yet. i will inquire about RAI
              with my new doctors. whoever they are. I have the same problems you do with my memory
              getting sick a lot and depression. i fight as hard as i can with it.
              whenever people tell me not to blame my memory or my eyes on medical problems or they say im ugly
              i always tell them…..well at least i have a reason! hehehee
              I am so glad i found this BB!!!!!!
              Sue

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