Clementine

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About Clementine

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  1. How often do you all get upper endoscopies and or colonoscopies? I know after age 50 a lot of people get the latter, but for scleroderma purposes how often does your Dr ask you to get them? I'm way over due on both and really don't want to get either. I've had them and don't think they are a big deal but I just don't want the expense or to deal with it but I know I should.
  2. Thank you! I really think it's nothing since my ECHO was normal. I just worry like crazy and it's been two years since I've had one. Hopefully I won't need the right heart catheterization. I've had one and feel they are a piece of cake, but time and money. If anyone else has anything to add, please do so. I don't like having it dilated and assume it could be worse now. Thanks. ❤️
  3. Hi All! My last CT scan shows a dilated pulmonary artery. In 2005 it was 30mm and in 2015 it was 35mm. At the time I also had an ECHO which was unremarkable. I am preparing for an upcoming appointment, with the same tests, and wanted to see what you all think. How concerned should I be? I have systemic sine sclerosis with ILD. Thank you.
  4. Has anyone else had nerve damage from having their labs drawn? Last week the phlebotomist hit a nerve while attempting to draw blood and now I have painful symptoms of nerve damage. I'm seeing a neurologist in a few weeks. I guess this could be classified as a complication of scleroderma ;). I just hope the nerve heals.
  5. Hello All, It's been forever since I have been on here! I've missed everyone. I have systemic sine sclerosis with interstitial lung disease (ILD) and secondary Sjogren's. I have been having pain in my esophagus for years now. It is a dull, constant pain and it is really affecting my well being. Do you think this is ILD related or GERD related? It is not heartburn but maybe it is the fact that my esophagus is a little abnormal. It hurts when I breathe and did I mention I am so fatigued? Can anyone relate and offer any insight? I want the pain to go away! Are there pain medications for this or do we just live with it? I am still on Cellcept and am assuming I am still stable. I go to see my rheumatologist next week for pulmonary function tests (PFTs) and an ECHO. I have an upper endoscopy coming up as well. Thanks, Jennifer
  6. I am positive antibody th/to. I just read that this antibody has a poor prognosis along with severe lung disease. No surprise about the severe lung disease, but has anyone else read that it has a poor prognosis? Four years of research and this is the first time I have read this. Thanks, Clem
  7. Hello, Does anyone have livedo reticularis, primary or secondary? If so, would you mind messaging me? Clem
  8. I am concerned about this also. I have disability through an insurance company, although I was also approved through social security in 2005. I can't receive SS disability due to not paying into it for over 5 consecutive years, although I could have received Medicare if I needed it. Does anyone know what my chances are of losing my status? I am stable, no miracles here, but I still wonder. Clem
  9. Barefut, I have been on and off Cellcept too, stopping cold turkey many times. I've not noticed anything odd happening. I sure hope you can get this figured out. How low are you all's blood counts while on Cellcept? Mine are on the low end of normal. I must be lucky. Do ya'll take an iron supplement? xo Clem
  10. i always need a heating pad because it's too hard to try to stay warm in someone else's house or in a hotel room when you are sharing it with someone else. Have fun!
  11. I saw a doctor. today and she felt inside my mouth. She told me she could feel fibrosis in the tissue of my chin area. She could see it when she looked at me as my face kind of pulls on the sides of my chin when I smile and appears a little tight. This prompted her to put her gloved hand in my mouth and feel around. She said she is pretty sure this is from Scleroderma and she knew that wasn't what I wanted to hear. I think this has happened within the last year. I wish there was something I could do about it. It's quite stressful.
  12. Hello, I have lip issues too. It's a bummer for sure. I really don't quite understand how this happens with scleroderma. Apparently it happens to those of us with sine scleroderma. I once had a date ask me if I smoked. I didn't end up marrying him. Lipstick looks ridiculous on me, but I wear it because it looks better than no lipstick. I wish I had Julia Roberts' huge smile!!!!!!! xo
  13. Hello All, I found out that Peanut has been back at Northwestern and in the hospital, so please keep her in your thoughts. I hope that she is on her way home and doing better as I type this. If I hear anything else I will let you know. Thanks, Clementine
  14. Thanks Ladies! I tried the ointment last night and I still woke up in the middle of the night with dry eyes...ugh. I'll try some of these tips. It is such a nuisance, isn't it? xo, Clem
  15. Does anyone with Sjogren's have constant red eyes and burning? I have had issues since October and it doesn't look like it's going anywhere. Still using Restasis and artificial tears. I just wonder if I need to see the doctor again, or if it's another lost cause and I just have to cope with it. Doesn't help that I just moved to one of the top 5 driest states but I did get to trade this for a lower altitude. Thanks, Clem