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Everything posted by nan

  1. nan

    Upper Abdominal Pains

    Barefut, When I had my major GI bleed I have coffee grounds. Have you had black stools too? You should call your GI and get a stool sample to him. I would also get a hemoglobin check. Nan
  2. nan

    Sct Update

    Dave, That is wonderful news! :D I am so happy for you and your family. Keep taking care of yourself and don't try to do too much. Nan
  3. Barefut, That is how I feel every day. It really frustrates me because I can't commit to anything because I never know when it will hit. It's overwhelming, but believe me, collapse don't try to fight it. The other night I got home from driving somewhere and I don't even remember driving. That really freaked me out! Take care, Nan
  4. nan

    Plaquenil--used To Treat Crest?

    Maddy, Like Pam I tried to go off Plaquenil for a whole month and the pain was incredible! I am hoping that my eyes stay healthy so that I can stay on it. take care, Nan
  5. nan

    New Member

    Hi, Welcome to the forum! I am sorry that you are feeling so bad. I too try to keep a positive attitude, though some days it is real hard. I have scleroderma, sjogren's, and fibromyalgia. Feel free to private message or email me at any time. Take Care :D Nan
  6. nan

    Time For Shots

    Susie, I know somebody that got the shingles vaccine. I will ask her the cost. I am on round 2 of shingles and it's the pits. Of course, I have been lucky enough to not have them for 10 years. take care, Nan
  7. nan


    Hi, I just posted about shingles before I saw this. They are painful! I have them on the side of my spine. Last time I had them on my face. Hang in there. The ones on my face left no scars. Nan
  8. nan

    I Cant Take It Any Longer

    Sam, I am so sorry that you are hurting so much!!!!! When I go thru spells of intense pain it does always seem to be one sided, but I can't figure out the reason. I do hope you can find relief soon. Nan
  9. nan


    Hi, I had shingles in 1997 hoping that I would never have them again. WRONG! They're back. I had forgotten how painful they are. It has made me realize that I need to cut back on worrying and stress. It doesn't help me. I hope everyone is hanging in there. Take care and stay worry free! :D Nan
  10. nan

    My Endoscopy Results

    Nelly, I have had many endoscopies. The first one I remember gagging. The rest of them I am totally wiped out. I had one last May and they were very concerned because they had trouble waking me up. That was a bit scary for my husband and son. The last one I had they were able to get me up. Definitely remind them to give you MORE MEDICINE!!!!!!!! Take Care! Nan
  11. nan

    So Frustrated!

    Lisa, I am so sorry that you have so many yucky things going on at this time. Please get your SOB checked out. I am sure your precious daughter will be a real trooper. I am sorry she has to go through all of that. I send a big hug your way. :D Nan
  12. nan

    Gi Issues/treatment

    Barefut, What a bummer! I have the watermelon stomach like April, but I don't have the issues you do. Take care, Nan
  13. nan

    Leg Ulcer - Possible Amputation

    Christine, Have they tried the hyperbaric chamber- oxygen therapy? I know many people that have done that and it has helped. I am so sorry that you are suffering with this. I send you a big hug! :D Nan
  14. nan


    Suzanne, I had been noticing since last January that I wasn't hearing properly. When I finally asked my husband and son if I should have my hearing checked they started laughing. That's when I knew I needed to get a hearing test done. I went to an ENT and had a full evaluation done and hearing test. I have a slight hearing loss in my left ear, not enough for a hearing aid, but enough to make me realize I am not hearing properly. I have to have a yearly hearing test done now. I don't know if it's related to scleroderma. Nan
  15. nan

    GVHD In Autologous Transplant

    Dave, I was just thinking about you the other day and I was wondering how you were doing. I am so sorry to hear what you have been going through. I can't imagine! One time I had an allergic reaction to an antibiotic and I thought I was going to lose my mind. I scratched so hard that I made bruises!! Mine only lasted a week. I don't know how you haven't totally lost it. Hang in there and I hope that you can find some relief soon. Nan
  16. nan

    Went To Ortho Specialist

    Vee, My scleroderma doctor also told me not to get cortisone injections and not to take prednisone because it can cause kidney damage in scleroderma patients. I don't know why she said not to do injections. Nan
  17. nan

    My New Dr.

    Hi, I think they also use Colchichine to treat gout, but I might not have that right. When I was first diagnosis with scleroderma. I had a chest x-ray, x-rays of my hands and elbows, pulmonary function tests, echocardiogram, and gastric emptying study done, plus 16 vials of blood taken and 4 urine samples. I have major GI issues. I have watermelon stomach( vessels in my stomach that bleed spontaneously associated with scleroderma, it's rare) and I have swallowing issues. I had two major GI bleeds and had to be transfused. Take care and I am so glad that you found a good doctor. Nan
  18. nan

    Weight Gain From Lyrica

    Jackie, Are you the one that recently had bunionectomies? If so, it might still hurt you to walk much. That can be a bummer. I know that I eat 5 meals a day and I am never hungry. I have about 100-200 calories each for two meals and about 400 each for the other three meals. I also exercise daily for at least 30 minutes. I pool walk or mall walk. Recently I have tried to up it to 40-45 minutes daily. I would have your thryoid checked. Mine is underactive and I am on synthroid for it. Good Luck! Nan
  19. nan

    Heartburn While Running/exercising

    Wow! I am impressed that you can run. Keep up the great work! I walk but I don't think I exert enough energy to cause heartburn. Although I feel nauseated all the time so I probably can't pinpoint if it's exercised induced. take care Nan
  20. nan

    Update On Me And Ari

    Peanut, I am so sorry that you have so much happening at one time. I send a big hug your way. :D I can't give any advice on medication because I don't have any lung issues at this time. Take Care! Nan
  21. nan


    Erin, I have had 3! The preparation is awful, but the test is no problem at all. If you have slow motility like most of us you might need more stuff to clean you out. For my last colonoscopy I started the prep in the afternoon the day before the procedure. I was supposed to have it at 9 the next morning. I hadn't even started any bowel movements at 9 the next morning. For a normal person with a normal GI system they usually are totally cleaned out by that time. I called in and I got scheduled for the next day because I finally started going. I had to take a little more stuff the morning of. Have you had the upper endoscopy? That's when they discovered my bleeding source, watermelon stomach. If you don't know why you are anemic it might be a good thing to have it done. Your health insurance should cover it. Take Care! Nan
  22. nan

    Dr's Do They Really Care?

    Sharon, I am so sorry that the doctors are being such idiots. I agree with Maddy. Can your general practitioner speed up the process? I think if you're breathless and not able to eat you are serious enough to warrant attention. I send you a big hug! :D Nan
  23. nan


    Patty, When I am anemic I jump , like restless legs and my arms can do it too. Also, any night I run in my sleep and kick hard. My poor husband! Take Care! Nan
  24. nan

    Took The Plunge

    Welcome, I am sorry about your diagnosis. I too have watermelon stomach and I hate the transfusions. Did you have the argon plasma coagulation done on your bleeding vessels in your stomach? Take Care, Nan
  25. nan

    Astis Trial

    I send good vibes your way and lots of hugs!!!!!!!!!!!!! :D Nan