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PHYLLIS.G

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About PHYLLIS.G

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    Newbie

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  • Location
    columbia, south carolina
  1. Thank you all who responded to my "1st time dealing" with sclero. Your courage gives me hope and your words comfort. My "doctor" /intern at M.U.S.C. told me that after being diagnosed with sclero that if after several years of having it and the disease doesn't get any worse, chances are it won't. Could this be true??!!! Thanks, Philly
  2. hey truman, i admire you for your strength. 16yrs is a long time of not knowing or being diagnosed with a disease and that's what it is is'nt it a disease. How hard it is to come to grip saying that about myself. I have a disease! It's crazy, when I was first told of scleroderma I was'nt too worried cause my only symptoms were the "cold fingers". now my fingers are "fat"/swollen all the time " I"m a little scared about this. i just don't know what to expect from it...
  3. THANK YOU SO MUCH FOR YOUR KIND WORDS. I AM SENDING THIS FROM WORK AND WANTED TO LET YOU KNOW THAT BEFORE I LEFT. PS WHAT IS PM???
  4. WOW, I'M SORRY FOR THE "PITTY PARTY I HAD. YOU LOST A TOE? CAN I ASK, DO YOUR FINGERS GET REALLY COLD AND TURN A BLUEISH/BLACK?? MY FINGERS WILL GET LIKE THAT AT WORK AND I WONDER IF I'M NOT GETTING ENOUGH OXYGEN THEN I COULD LOSE MY FINGERS!!???
  5. SORRY TO HEAR OF YOUR VISIT WITH THE DOCTOR WENT SOOO BAD. CAN I ASK, WAS IT A DOCTOR AT MUSC?? I THINK I WENT TO HER AS WELL AND THATS WHY I HAVE'NT BEEN BACK.
  6. When I was first diagnosed with scleroderma several years ago I had a very positive outlook about it. I thought I'm young, in good shape and take care of myself, I can live with "cold fingers" once in a while this won't effect my life much. Today, not so positive... I'm very very angry about the changes in my life. Thinning hair that is getting so noticeable that I wear a ball cap when I'm out with my friends. I'm going to a dermatologist and have been using products for this for years but it's not helping, iI still notice it. I have seen first hand a person who's mouth has been effected with scleroderma. I took a long hard look in the mirror and I noticed not only is my hair thinning but I now have a receding mouth!!! How do you deal with that! I have a lack of engery and heartburn all the time. My relastionship is suffering because I'm angry all the time. How do I explain to others whats going on when I don't understand it myself?? It's embarrassing. I feel like I'm on a runnaway train and there's nothing I can do to stop it! What is there to look foward to when I know it's only going to get worse...
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