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beanie

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About beanie

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    indiana
  1. Gleevec anyone?

    Funny, just went to my rheumatologist and she mentioned this drug too. Said it was still in clinicals, but there was a glimmer of hope that it may be beneficial in treating the fibrosis and that it would be another 2 years or so. She wants to try me on it. Michelle
  2. Systemic Sclerosis Score

    Thanks for the replies. Mando, for the film test, did they give you any kind of sedative for anything prior? I would think that would be hard to do. Thanks, Michelle
  3. Where did your skin thickening start?

    Mine was my face and hands. Interesting, someone mentioned skin not tanning in the sun on her child. My skin on my face is really tight and during the summer, it just doesn't tan. The rest of my body will be brown and my face is pale. I use a self tanner on my face in the summer to help even out the difference. Michelle
  4. I had an evaluation with a new rheumatologist last part of December and my pulmonary doctor received a copy of the evaluation but my rheumatologist didn't, so I asked for a copy to take to my my rheumatologist appointment next week. Of course, I read through the report from the new doctor. Some things I don't understand. Maybe you all can interpret for me :) 1st. My systemic score is 8, 1+ in my face, bilateral hands, bilateral forearms, torso and both feet. Do you all know what yours is and what is high/low? 2nd. In his impressions he listed parotid enlargement and suggested checking SSA and SSB. Anyone know what these tests are? 3rd. In his impressions he suggested a Schirmer test and necessary staining for sicca symptoms. What is sicca and what is the test mentioned? I will find out more on May 1st when I see my regular rheumatologist. Just wanted your input. Thanks, Michelle
  5. Can't stay out of the bathroom!

    Thanks for all the info and input. For some reason, today was a good day, no running to the bathroom. Go figure. Bless you all. Michelle
  6. What ability would you most want to keep?

    I have to agree with many of you - energy and stamina. I have 5 and 8 year old boys and I do worry about being able to take care of them and doing things with them. So tired all the time. Next would be my eyes. My eyes are red, dry and uncomfortable, though the vision hasn't changed much. Just can't wear my contacts anymore. Bless you all. Michelle
  7. Anyone have problems with diarrhea? Is this part of the scleroderma? I have had periods of diarrhea and infrequent nausea in the past that will last for a couple days and then subside. This last 9 days, I have had diarrhea every day, some nausea and have thrown up a couple times. I have a follow-up appointment with one of my doctors in 2 weeks, but wondered if this was something that others have problems with too, or if something was going on with me. Also, if it is problem for you, what do you take? Over the counter antidiarrheal medications don't seem to do much for me unless I take 3-4 a day. I know I have to drink a lot and be watchful for dehydration issues, watch my diet and eat smaller, frequent meals. Thanks, Michelle
  8. Anyone seen my top lip? No? Me either!

    Well, add me to your "lost lips" episode. Actually, that was one of the first signs, a decreasing mouth size, that my orthodonist noticed as a teen that sent off an alert. I try to teach my kids to "chew with their mouths closed" which I can't even do. I feel like a real savage sometimes eating. Not that I am being rude, just don't have enough "mouth or lips' to close properly while eating. Anyone notice that? I do periodically use lip liner to help out a little. I think, like all of you, that I am more aware than others (besides my dental hygienist, bless her heart for having patience) of that feature. Take care ladies. Michelle
  9. 1st Raynaud's attack?

    I too have the Raynaud's. Mine goes straight to a blue and then when my hands start to change back, sometimes the pain and burning is to intense. I went on a field trip with my 2nd grader around holiday when they caroled and had to do some walking outside, and I had layers and 2 sets of gloves on, by the time we got to our final destination, my entire hands were totally numb and I spent about 15 minutes in the bathroom in pain. Tears and all. It was the worst I have ever had. Wished I had known about the heat packets then. Take care and do bring it to your doctor's attention.
  10. After second opinion visit

    Snowbird, Yes, I think I am okay with my doctor's decision. I trust her and I was leery of the treatment, but was going to do it if she felt it was warranted. Maybe something will be available for me someday. Right now, with an 8 and 5 year old, I feel like this is where I need to be right now. Thanks for the posts. In much faith, Michelle
  11. Well doctor doesn't want to put me on Cytoxin or Imuran. She said that she just came back from a conference and one of the topics was the effectiveness of these drugs and if the slight benefits may warrant the terrible side effects. She said it is so 50/50 for showing such a small improvement in PFTs but in the long run, they don't extend life expectancy any or quality of life. So, she says continue taking care of myself and be patient. That there are some more drugs in study. Guess I am a little relieved. I don't actually feel bad and was scared to take something that may make me feel bad, know what I mean? Also, my liver function tests run slightly high and that would be another thing we would have to watch carefully. As for my ulcer, she says she thinks it is a calcium deposit. Do you get pain with those? Said to soak it if it hurts and if it becomes too bothersome, she would send me to the wound center. I am trying to keep the end soft with medication and wrapping at night. It is so hard. Read many posts on Raynaud's. This is the time where it really starts bothering me some. Have put thermal underwear on my holiday list, the silky kind as I think they hold more heat in. Like the idea about the scarf someone had. Just wanted to post and wish you all a happy holiday season. Take care, Michelle
  12. Finger ulcers

    Thanks everyone. Yes, the specialist I am seeing this afternoon is a rheumatologist and his specialty is actually scleroderma. I see a rheumatologist of my own closer to where I live. It will be interesting to actually see someone whose main interest is scleroderma. be thinking of a good plan of treatment for me. Viagra and Cialis, well that is interesting. I am on Lotrel and Procardia and have been on those for a bit. Will update when I know more. In much faith, Michelle
  13. Finger ulcers

    Hi. I am 39 and when I was 13-14 suffered from an ulcer on my right index finger for a long time. I was diagnosed with scleroderma at age 16, so we didn't know what exactly was happening with my finger. Doctor, then, just said to soak finger in soapy water. Over time, I lost the end of that finger up to the first knuckle and now have a "little finger" there. Anyway, after all this time, now I have another ulcer but this time on my middle right finger. I vaguely remember having the ulcer forever, seems like, before it went away when I was young. What do you all do for ulcers? I know I am lucky as this is my only second one but I don't want to lose the fingertip if I can do something. I type as one of my part-time jobs and am concerned about that. Right now, it throbs and aches. Tell me how you all deal with these and is there any medication to help? Thanks, Michelle Oh, does this mean my scleroderma is active? I see a doctor on Friday for a second opinion about starting Imuran or cyclophosphamide for aggressive therapy due to decreased PFTs and CT scan evidence of progression of the pulmonary fibrosis over the last year.
  14. Dry Eyes

    My eyes are sooooo red all the time. Up to about 8 months ago, I could still wear my contacts periodically but now I just wear my glasses. Dry too. I use the artificial tears which helps them feel better, but they don't look much better. It is so embarrassing sometimes how red they are and someone says, what is the matter with your eyes. My doctor says I do have some inflammation in my eyes too. What works for the redness? Michelle
  15. I am 39 and since about 16 have had problems with food getting "stuck" and reflux. I started having dilations when I was 21 and put on acid inhibitors, currently omeprazole. The dilations do help and I can tell when it is almost time for another, one about once a year. It is done under sedation so there is not much discomfort. Hope that helps some. Michelle
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