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About oddone

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  1. Dave - I am soooo happy foy you and your family!! All those dark days seem to have paid off. Congrats! Your strength and those who have supported you is shining through! Have a wonderful day!
  2. Take your time, rest and get your strength back. We are all thinking about you!
  3. Thinking about you, I hope you are well soon.
  4. Gidget - My husband was screened yesterday for the Gleevec study here in London. I specifically asked about the usage of acetaminophen/paracetamol, as he seems to use it at lease once a day. They said that they were not aware of ant restrictions concerning acetaminophen/paracetamol. I was wondering if you found any literature about this. Thank you - Sorry to hear of your strep, hope t is sorted out quickly!! :)
  5. My husband has decided to go ahead with the Gleevec Study. He has the same DR. as "Lucy" here in the forum. His screening is scheduled for April 28. Hope all continues to go well Gidget, look forward to some updates. Are PTF's and ECG's performed at the screening along with the bloodwork, urine and skin scores?
  6. My dear husband is on Pariet for reflux, and it works very well for him. No side effects to report, seems like a mild way to eliminate a symptom, good luck!!! :)
  7. Dave: Im so glad to see that you have taken a post here on the forum, your helpfulness, insight and support is heartwarming. The truth of your journey, through your trials and tribulations is an inspiration. Good luck, I look forward to many discussions and chats!
  8. My husband is right handed, and is affected more in the right hand
  9. Hello My husband may be participating in a clinical trial for Gleevec. We should be receiving information concerning the trial in 3-4 weeks. Are there any sclero's on this forum currently on this study? The big hesitation for my husband are side effects. Anyone?
  10. My dear husband suffers from anxiety and takes clonazepam when required. He has recently been complaining of being SOB, minimal exertion. Also, has problems taking deep breaths. How do you know if this is a new problem? We take his blood pressure once a week, and dr. has said 135/85 consistently would be high. Several readings 142/87 or there abouts, but after deep breathing exercises or laying down, it gets better. My question is how do you know if its increased anxiety, Blood pressure problems beginning or lung involvement (SOB)???? Very confusing Thanks for any replies! Oddone
  11. Sorry forgot to add... If your guests want to find out more about Scleroderma, i beleive this website address is on the bracelet. This way, it doesn't have to be directly discussed on your special day, but it will give you a feeling of charity and accomplishment...... making your day even more special....................and rightfully so. Gook luck!
  12. What about having the little "gifts" or "trinkets that people usually have sitting at each plate of the reception I beleive they are called bombadiers? An idea..... My wonderful friend, kind of adopted brother, had cards made up saying "in lieu of bombadiers(SP?), we have made a donation to the Cancer Society in loving memory of ........". It was very touching, and I thought, extremely generous. Perhaps something similar to the following: "In lieu of a bombadier, we have made a charitable donation to the International Scleroderma Network, to strive to continue with research, awaerness and education on this rare disease." Have a pretty cardstock with a scleroderma ribbon printed on it, set like a placecard in front of each plate, perhaps with a Scleroderma Awareness Bracelet attached. If it is something close to your heart, and done so charitably, I don't think anyone would find it tacky.
  13. This was a great interview, hope everyone continues to get the word out about Scleroderma. The more people that have knowledge of Scleroderma, the more likely there will be funding and research dedicated to finding a cure.
  14. Dave: Great to hear from you, and that everything is looking UP!!!!!! Think of you often, hope that it continues in the right direction, Thats awesome!!!!!
  15. My understanding is that if the thickening occurs above the elbows, and down to chest etc. etc. it puts you in the "diffuse" category.
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