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Everything posted by nan

  1. nan

    Cortisone Injections

    Jackie, I have had cortisone injections in the past. I didn't have any reactions, but they didn't help me at all. I was glad to hear that your bunion surgery went so well. I too am not pain free ever. But the intensity varies and I consider that a blessing! Take Care, Nan
  2. Josee, I am impressed with your English. I took many years of French, but I couldn't begin to write to you in French. I am so sorry to hear of your sister's diagnosis. You have come to the right place for information and support! I am sorry that your sister has had to be on a feeding tube. I haven't heard of the botox treatment. I hope that it will work out for her. Meanwhile, take care of you and your sister. You are a great sister! Nan
  3. nan

    Fatigued And Feeling Overwhelmed

    Barefut, My house is in turmoil. My son is about ready to turn 15 and he is an awesome kid, but he's a teenager! My poor husband is worried about me and my son. I am just overwhelmed and feel guilty for not being able to do more than I can do. I try to stay positive, but sometimes it's really hard. I loved the spoon story. I am going to see a psychiatrist on September 21st. Please take care of yourself! I send a huge hug your way!!!!!!!!! :D Nan
  4. nan

    Bunion Surgery Today 3:45 P.m.

    Jackie, How did your surgery go? I hope it went well and that you're feeling good! Nan
  5. nan

    Astis Trial

    Bless your heart! I really admire your strength. I send good vibes your way. :D Nan
  6. nan

    My New Job...

    Jennifer, That's wonderful! Now I will sound like a mother when I tell you to pace yourself. :D Nan
  7. nan

    Still Feeling Stiff

    Celia, Prednisone has never worked for me. Plus, I can't use it now. Plaquenil has really helped me. I didn't realize how much until I went off it for a month because the doctor said I didn't have to be on it. That was because he couldn't figure out what was wrong with me. When I saw him and he saw my hands and nailfold capillaries he said to start it immediately. Maybe it is taking a while to be effective. Take Care! Nan
  8. nan

    Bunion Surgery Today 3:45 P.m.

    I am sure your surgery will go well. Just take your time and don't push yourself. Hopefully the pain medications will help you sleep through the pain. Take care! Nan
  9. nan


    Pam, Thanks for sharing The Spoon Theory link. I can't produce tears, but I had a good cry without tears. It's wonderful! Nan
  10. nan

    New to the Forum and Scared

    Welcome James. You have picked the right place for support and information. I am so sorry that you are so sick. I think it would be great if you could see a scleroderma expert. Take Care! Nan
  11. nan

    Bunion Surgery

    Jackie, I just started with jaw pain off and on about a month ago. It's not every day though. I am going to ask my rheumatologist about it at my September visit. I am sorry you feel so bad. Eventually your foot will feel better. Take care! Nan
  12. nan

    Bunion Surgery

    Jackie, I was a ballerina so I can relate to bunions. I had bilateral bunionectomies in 1985. I had my right bunion done again in 1999. In 2000 I had left bunion done again with ileac bone graft. I hope to never have it again. Sweet is correct in that the pain is pretty intense but my shoes fit. My first doctor really messed up my feet that is why I had to do it again. I will tell you that the worst pain I have ever experienced post-op was from hand surgery. That make the bunionectomies seem like a breeze. I am sure that you will do well. Good Luck! Nan
  13. nan

    Take My Breath Away

    Sharon, I am so sorry you are so sick. Hang in there! Nan
  14. nan


    Hi, My hands go to dark purple , but have never gone black. Did it stay black or go back to normal color? If it's staying black you should see a doctor. Nan
  15. nan

    Being My Own Advocate

    Margaret, I think that Janey was referring to how many Raynaud's patients have scleroderma. Nan
  16. nan


    I bruise very easily. Just the other day I asked my husband if I should call the doctor because it looks like I have been beaten. I don't remember how I got most of them. I also got a bruise three years ago and there is still discoloration there. I looked up bruising on the web and it said as you get older you can bruise more easily. Also, I have watermelon stomach which is considered a bleeding disorder and they said people with bleeding disorders bruise easily. Sorry I rambled on. Take Care! Nan
  17. nan

    Mitochondrial Disease

    Thanks for sharing that information. I am so sorry that you have been so sick. I hope that they can find a way to alleviate your problems. Nan
  18. nan

    Dental Gum Graft

    Hi, I have had several gum grafts done due to receding gums. I didn't have the diagnosis of CREST at the time, but I did have Sjogren's. Mine weren't always successful, but I didn't develop any infections. I think I probably had CREST at least when I had my last graft, but it wasn't diagnosis yet. Could you ask you rheumatologist their opinion on it? I know that I really didn't want to have the last graft done, but the periodontist said I had tissue damage and he was scared my tooth would fall out. Take Care! Nan
  19. nan

    Ana Test

    Sharon, My ANA test has been positive and negative at different times. When I was diagnosis at Johns Hopkins the ANA test I had done a year earlier was negative and the rheumatologist still gave me the diagnosis of CREST. The ANA test that was done after I saw her was very high! The body is an amazing thing! Take Care! Nan
  20. nan

    Voices Of Scleroderma

    Jennifer, They are wonderful! I got the collection of them. Have a good day! Nan
  21. nan

    Crest Syndrome?

    Hi, Welcome to the forum! You have come to the right place for support and information. I am sorry about your latest diagnosis. I too have CREST without the S. Did the doctor tell you the results of your PFT's and echocardiogram? Feel free to private message or email me if you have any questions. Take care of yourself! Nan
  22. nan

    Nitroglycerin For Raynaud's

    Barefut, You are right about the vibrations, you shouldn't be doing that stuff. Sorry! I am also sorry that you hurt so much. I have heard that the creme doesn't help much, but I can't remember what does. I would say just to watch your finger very closely. Take care of yourself! Nan
  23. Tammy, My lips look like I have on red lipstick. It does add some color to my pale face. Mine also crack open. I looked closely and I have noticed many telangectasia. I also have Sjogren's which causes drynes. I just keep caking on the vaseline. I hope that helps some. Have a good day! Nan
  24. nan


    Margaret, I am so sorry. I hope that things can be figured out.. Nan
  25. Sam, I am so sorry! That is absolutely ridiculous!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Nan