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Everything posted by nan

  1. nan

    Disability Question

    Kelly, I was diagnosed in 1998 with Sjogren's syndrome, Fibromyalgia, and Raynaud's. I was a schoolteacher. I kept on plugging, though I missed a lot of days. Teaching is difficult when you feel well. In the fall of 2004 I had a major GI bleed and was diagnosed with GAVE( watermelon stomach) I went on extended sick leave and applied for disability. I was denied the first time, but approved the second time. I was finally diagnosed with CREST in 2006. There is no way I could have continued working. It is hard not to do it, but I sleep so much I really don't get bored. Ultimately, the decision is yours. If I had two small children at home I would definitely stop working so that I could enjoy them more. Take care of yourself! Nan
  2. nan

    Disability question

    Pamela, I have been on social security disability since 2005. I haven't had a review yet. I think that it is due in June of this year. A friend of mine has done the review many times and says that it isn't as bad as the first one. Taxes aren't taken out of your monthly check, but you have to pay taxes on the money when you file your income tax. Last year I paid quarterly by doing a guessestimate of what I would owe and that helped immensely. I know that your children are grown, but for people that have children under the age of 18 they get a paycheck monthly from social security once you are approved and you don't pay taxes on that. Good Luck! Nan
  3. nan


    Karen, I have hypothyroid also. I have had it for 33 years. I also have Sjogren's, scleroderma, and fibromyalgia. Nan
  4. nan

    New Member

    Robin, Welcome to the forum! This is a great site for information and support. I don't know any recommendations for your skin itching. I do not have that. As far as the endoscopy goes, that's a piece of cake. If it's the upper endoscopy, they put you out and stick a tube down your throat and no problem. If it's a colonoscopy the only problem with that is the prep. You'll be fine. I was in to see my primary care physician about two weeks ago and he had a med student with him. The med student's eyes got huge when he saw my purple hands. He asked permission to touch them. He was a first year med student. I started telling him all of this info on scleroderma and told him that he would really impress his teacher with that knowledge. It is amazing how little people know about this disease. Nan
  5. nan

    To all who have Limited/Crest

    Celia, At this point I don't have either. From what I understand one doesn't necessarily go with the other, but I might be mistaken. Have a good day! Nan
  6. I don't know anything about remissions. It's sounds great! Have a good day! Nan
  7. nan


    Celia, My toes do that frequently. I think when I look down at them that they will be full of infection and nothing is there. I started doing that about a year and a half ago and haven't had any ulcers yet. My fingers also do it. It's really painful. Take care, Nan
  8. nan

    My girlfriend has scleroderma

    Martin, How wonderful you are to come here to get help. First of all I am so sorry that you and your girlfriend are having to go through this. Especially at such a young age. My husband is very supportive of me. He researches online. Sometimes I don't let him know how bad I feel because he is such a worrier, but he gets upset if I do that. Please take care of yourself and your precious girlfriend and keep on posting. Nan
  9. nan


    Hi, Fatigue is definitely a problem for me. I had to take disability retirement in 2005. I try to pace myself. I feel like I have had a full day if I can get my son to school, get him back home, do some laundry, and possibly a trip to store. I can't clean my house at all. I always ride a scooter in the store. I take frequent naps. Currently I am dealing with a 16 week old stress fracture in my foot and that is really wearing me down. Take care, Nan
  10. Peggy, Please know that you and your family are in my thoughts. Nan
  11. nan

    GAVE (Watermelon Stomach)

    Hi, I too have GAVE. I was diagnosed in the fall of 2004 when my hemoglobin went down to 6.1. I had two transfusions and didn't have to have a treatment because I wasn't actively bleeding when the doctor did the upper endoscopy. I was then stable until May 2007. I went down to 7.4. At that point I was actively bleeding. I had argon plasma coagulation done May 7th and a second treatment done on June 18th. I looked so good at that point that he didn't have to do another treatment. I felt very ill after both treatments. I am very fortunate in that I am not bleeding as much as you. I know that there is another person on this site that has to have treatments monthly. I am so sorry you are having to deal with this. When your hemoglobin is low you really feel lousy. I might get mine checked this week. I am more tired than usual and my brain is really foggy. Maybe that is due to my 15 year old son. :rolleyes: Take Care of yourself, Nan
  12. nan


    Ramona, I have CREST syndrome and I have been told that CREST is an old term, now most doctors call it Limited Cutaneous Systemic Sclerosis. On a brochure I have it says, CREST syndrome, also known as Limited Cutaneous Systemic Sclerosis. I hope that helps you. Nan
  13. nan

    Peripheral Neuropathy

    Thanks for all of the responses. It will be interesting to see if I do have it. I have to wait for my stress fracture to heal. I went to the dr. yesterday and got a new soft cast. He hopes that it will heal by January. Stay warm! Nan
  14. Hi, I know in the past I have read about someone having peripheral neuropathy. I went to a neurologist last week and he thinks that I have it. I can't get the nerve testing done until my stress fracture in my foot heals. I was just curious. I hope that everybody had a happy day yesterday. Nan
  15. nan

    Temp Everyday

    Peggy, I would let your doctor know about that. Especially since you're being watched for lymphoma. A few years back I was doing the night sweats and changing pj's at least three times a night. That is the pits!!!!!!!!!!!!! The doctor never figured it out. My temp last week was 95.1. My rheumatologist told me that that can be indicative of infection just like a high temperature. Go figure! Take care and call your doctor, Nan
  16. nan

    Stress Fracture

    Wow! What a Fall this has been!! I had shingles in October. A week ago I was so dehydrated and weak when I got to the endocrinologist office that she sent me straight to the ER because she thought I was having another major GI bleed. I wasn't and they never really figured out what was going on. The Ph in my urine was elevated so I got another urinalysis and urine culture done on Wednesday. Tuesday my foot hurt a little more than usual. I have had to stop pool walking because the pool temp is 92, but the air temp some days is as much as 16 degrees cooler so my Raynaud's was going crazy. I started mall walking 5 weeks ago. I went to the doctor yesterday and I have a STRESS fracture. Bummer! I am now in a soft cast and boot. When I first saw the dark bruising I was scared it was gangrene, so I was relieved that it was just a stress fracture. Each day is a new adventure! :P Take care, Nan
  17. nan

    Stress Fracture

    Sweet & Susie, Thanks for your replies. When I asked the doctor why my foot didn't hurt he said that it was because I am in so much pain all the time that a stress fracture is nothing. He then said that that was really sad. He is the dearest man. Susie, I used to be a ballerina, so my motto has always been that the show must go on.... I am having to learn that that doesn't work for me now. It's a hard lesson to learn. Take care, Nan
  18. nan

    Longevity With Scleroderma

    Great story! Thanks for sharing! Nan
  19. nan

    Fibromyalgia And Scleroderma

    Karen, I have both, but I don't know that they go hand in hand. I was diagnosed with Fibromyalgia, Sjogren's, and Raynaud's in 1998 and got scleroderma diagnosis in December 2006. I think that fibromyalgia deals more with widespread muscle pain and I think scleroderma messes with tendons and joints, but I can't promise. I take amitriptyline for sleep. Good Luck! Nan
  20. nan

    Depressed And Fed Up!

    Celia, I am so sorry you are having such a hard time. I too have limited scleroderma and fibromyalgia and nothing helps my fatigue. I can sleep 10 hours at night and still need a 2 hour nap. Plaquenil helps me with my joint stiffness and some days are better than others. Nan
  21. nan

    Approved! It Came!

    Barefut, That is awesome!!! I am so happy for you. Nan
  22. nan

    Leg Pain

    My legs have been killing me lately, but they aren't purple. I would touch base with your doctor. take care, Nan
  23. Sam, I have done that many, many times. A lot of times I had to change nighties at least 3 times. It was so gross! I haven't done it in awhile, but I really didn't like it. I never really knew what caused it. I am in menopause, but wasn't in menopause when I was having all of the sweating. Go figure! I would touch base with your doctor. Take care and try to stay cool, Nan
  24. nan

    Roche Approved Rx?

    Barefut, It is about time you had something good happen to you. Good luck on job hunting. Nan
  25. nan

    Upper Abdominal Pains

    Barefut, That sounds good! Let us know what you find out and take care of yourself. Nan