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barefut

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Posts posted by barefut


  1. Thank you guys for the detailed insight. It's just what I wanted to know. I guess I'm trying to prepare myself for the inevitable.

     

    I don't know what the abbreviations mean regarding the PFT's (I know that one ;) ) but I was told my diffusion rate was 67% 3 months ago. Down 3% from the previous 3 month checkup so I wondered why doctor said he didn't need to see me for another 6 months this time.

     

    I get short of breath when I get stressed, which is often (going through a divorce with 2 young kids)

     

    I've also noticed recently that I will get SOB in a stuffy room. I can't sit in my favorite, crowded coffee shop for 20 minutes without feeling SOB. BUT I can work up a sweat mowing the lawn and have no problem. Slow and steady is the key. I tried scrimmaging with my son's soccer team and I wasn't so much out of breath as I was hot and flushed in a very short time.

     

    I'm planning a trip back East to visit relatives and I'm worried about flying. I just know I will have problems breathing on the plane if I can't sit in my coffee shop for 20 minutes, how can I sit on a plane with the stale, recycled air for 5 hours?

     

    I had a mini panic attack once on a crowded flight. I just didn't feel like I could breathe and I started feeling claustrophobic. I had a hard time holding it together. This was 15 years before my diagnosis!

     

    Anybody else experience any of the same - SOB in stuffy rooms, with stress, on planes or flushing quickly with exercise?

     

    Thanks again for the wonderful insight.

     

    Barefut


  2. Hi Jennifer,

     

    I have microstomia (big word for small mouth) and I have one particular deep vertical line above the left side of my upper lip. It kinda looks like a scar almost.

     

    I can tell my mouth has gotten smaller just by looking :mellow: and I see a big difference when I look at photos of me 10 years ago.

     

    My rheumatologist says its caused by tightening of the tendons in my face.

     

    Its hard for me to look in the mirror. I try not to.

     

    You are gorgeous in your photo!


  3. Hi,

     

    I take 2000mg Cellcept with no side effect problems. You have to wean up to full dosage. Some people have sharp stomach pains in the beginning, mine were barely noticable and only lasted for about 5 minutes and only the first 2 days. You have to take it on an empty stomach.

     

    It's sole purpose as far as I know is to slow progression of the disease. I don't know of anyone else but me taking it. I think they have only recently started using Cellcept for scleroderma. It doesn't do much if anything for aches, pains and stiffness. (I've just gotten so used to living in pain that I've accepted it as a part of life.)


  4. Anybody on oxygen? Here's a barrage of questions for you:

     

    At what point or how bad off were you before you went on oxygen?

     

    Did your doctor insist on it or did you ask for it?

     

    Are you on it all of the time? If not, when do you need it most?

     

    How is life better for you on oxy?

     

    How is life worse for you on oxy? (is it a pain in the rear?)

     

    Did your family/friends treat you differently when they first saw that you had to have oxy? If so, how?

     

    Do you get stares in public? If so, how does it make you feel?

     

    That's all for now. Thank you very much for your time.


  5. Lastnight I posted on the other site about self-hypnosis as a means of healing but couldn't get back on there to reply, that today I read a prediction that said, "This is a good time to train your own healing abilities as your sensitivity is high and you are more capable than usual of tuning into the healing energies."......Weird!


  6. Hiya,

     

    Good to be here!

     

    I have had a smallish, (about the size of a BB) hardish, whiteish bump under the skin on my forearm for many, many months, only bothered me above the eyebrows (in my head - ha!) ;)

     

    Well I woke up this morning and now its a bit larger, warm to the touch and a little red around the edges.

     

    Anybody ever have one of these?

     

    Isn't this site much neater?

     

    Love it! :wub:

     

    Barefut

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