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Everything posted by nan

  1. Hi, Congratulations! I too am on disability. My husband still works so he doesn't get anything. My son gets enough to cover what he needs. I am not sure how they figure it out. I had taught school for 18 1/2 years and had part-time employment before that. Because I taught I get disability from the state also. It has been a blessing for us. Take care, Nan
  2. Margaret, I am so sorry to hear about Gareth. That is a bummer!!!!!!!!!! for all of you. Please take care of yourself too. You are an awesome mom! I am sending good thoughts your way. Nan
  3. In looking through the posts it looks like these are from 2008. The last few I can't find a date. Are they from now? I hope so because it was great seeing a post from Peanut. Nan
  4. I am glad everything was normal and that it wasn't too painful. Nan
  5. Jae, Welcome! I have GAVE. Dr. Shelley is correct in describing it to you. Mine was discovered when my hemoglobin went down to 6.1. An upper endoscopy was done and the doctor said I had GAVE. Some doctor told me to think of it as telangiectasia in the stomach. I have CREST. Take care, Nan
  6. Welcome to the forum! I am sorry you have to be here, but this is a great place for support. I go to Johns Hopkins and love it. Why don't you check and see if there is a scleroderma specialist in Pennsylvania? I thought there was a doctor. Medsger, but I might not be correct. Take care, Nan
  7. Honey, Listen to what Shelley said. You shouldn't wait until July. I just went to a nutritionist and you can make awesome shakes using Ensure or other similar products or instant breakfast mixes. Also, protein bars are good if you can tolerate them. Let us know what you find out. Take care! Nan
  8. Welcome Morgan! Did you doctor let you know what type of scleroderma you have, limited or diffuse? I do know that scleroderma affects each person in a different way. You have definitely come to a great place for support. It looks like Amanda gave you great sites to look at. Take care, Nan
  9. Mum, I am so glad you have come to the forum, but I am so sorry that your daughter is so sick. She is lucky to have you. I too have the watermelon stomach. I have been fortunate and only had two major GI bleeds and for the most part I am stable. I am sending good vibes to your daughter. Take care, Nan
  10. Shelley and Kathy, Thanks so much for your replies. Shelley, I have been fortunate with watermelon stomach so far. I have only had two major GI bleeds since it was diagnosed in 2004. I have only had two anticoagulation plasma treatments and for the most part I am stable. YEAH!!!!!!! I know some people have to have the treatments monthly and get transfused also. They also have trouble keeping up the hemoglobin. So I feel very blessed. Have a great day! Nan
  11. Hi, I had my check-up yesterday at Johns Hopkins. I told my doctor at this point my main problem is horrible pain and swelling in hands and feet. I was diagnosed with CREST without the S in 2006 and Sjogren's. I also have fibromyalgia. I can't do antiinflammatories or prednisone due to GAVE. She said that it could be a fibro flare because all tenderpoints were sore. I also have some mild pitting edema. She said to watch my skin closely because swelling and pitting can be a precursor to the skin hardening. At that point she said that she would be more aggressive in my treatment. I
  12. Do you think she has PAH or lung issues? I am not a doctor, but that is just a thought. I thought there was treatment for these. I have CREST and the doctor didn't say I have 5 years. Take care, Nan
  13. Very interesting! I have Sjogren's and the dry eyes and mouth are horrible. Don't let it scare you, it's manageable. I am sorry you are having to deal with so much. Take care, Nan
  14. Hi, I have had it done. The nurse that did it said most people say it really hurts. I didn't think it was that bad. For me if I know it won't last long I am ok. It's a very different sensation. It feels like your muscle is going to jump out of your skin. Just think great thoughts and you will be fine. Nan
  15. Interesting that you would bring this up. At my last opthamologist's appointment the doctor mentioned that my left optic nerve was enlarged but not enough yet to warrant any testing. I then asked how long it had been enlarged and I think he said since the last visit. I didn't ask anymore questions because I didn't want to know what it could be. So mature of me. When I got home and looked it up I saw that it can go with glaucoma and MS (multiple scelrosis). I am thinking no way could somebody have scleroderma and MS, but I guess anything is possible. I go back to see my opthamologist in
  16. Betty, You poor thing! I have Sjogren's too. My main problems have been severely dry mouth and eyes. I too am on Evoxac- so far no eye problems. I still have to use Biotene toothpaste though. I have never experienced the blisters. I have cuts at the corners of my mouth. Take care, Nan
  17. Good news! I am sorry that you didn't get enough sedation. Nan
  18. Joanne, Sounds like you do have a lot going on. I have fibromyalgia, GERD, Raynaud's, Sjogren's along with scleroderma and GAVE. I think we all have a combination of stuff. Take care, Nan
  19. Joanne, Welcome!!!!!!!!!!! I too have GAVE. I have had the argon plasma coagulation done twice. Painless procedure, I go to sleep very easily. They usually have trouble waking me up... I did have some discomfort due to whatever it is they put in your system. Let us know how you do. I am sure you will do well too. Nan
  20. I too have Raynaud's in my feet. I don't really have any good suggestions. Just watch your calluses to make sure they don't get infected. I know that my feet are numb so much that I can't always tell when I have hurt them. I know that I had a stress fracture in my foot that took 27 weeks to heal due to Raynaud's and poor blood supply. Take care, Nan
  21. Sharon, I am so sorry to hear all that you are going through. I will keep you in my thoughts. Don't you have GAVE also? Take care, Nan
  22. Emmi, I loved reading your blogs. I am 52 and wasn't diagnosis with CREST until I was 49, though I think I had had it for at least 8 years before. I was a ballerina. I loved it. I also choreographed. The images you created when talking about your dancing really touched me. Keep up your positive thoughts and keep on dancing! Take care, Nan
  23. Monica, I am sorry you are feeling so low. I hope that you will be able to get some answers soon. I too have Sjogren's. I tested positive for Sjogren's and my ANA was positive. But one time when I was tested everything was normal. Don't count on the bloodwork alone. I know that my doctor at Hopkins diagnosis me by looking at me and hearing my symptoms. She said she didn't care what the bloodwork said. Unfortunately I find that most doctors want the bloodwork to prove it. I had the eye test and it was positive, but when I had the lip biopsy it was negative. Best of luck, Nan
  24. Winter, I too have CREST. In 1998 I was diagnosed with Fibromyalgia, Sjogren's, and Raynaud's. I was able to work until 2004 when I had a major GI bleed which was caused by GAVE( watermelon stomach) . This can go along with scleroderma. I was finally diagnosed with CREST in 2006. I don't have the skin hardening so I feel very lucky. Nan
  25. I am very flat so I wear one of those stretchy bras that doesn't hurt. Just this year my main problem has been with pants. I have had to get elasticized pants because I can't stand tightness anywhere, especially my waist. It also hurts me sometimes to have any clothes on, I ache so much and they feel heavy. Take care, Nan
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