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Everything posted by nan

  1. nan

    Got My Disability Today

    Yeah!!! That is a wonderful feeling! I remember when I got mine. I didn't realize that children got benefits also. I have one son and he gets a check monthly. That was a nice surprise for me. Now you can relax and get that doctor's appointment. Nan
  2. Sam, I was going to ask about disability,but I didn't want to bring it up. I am so sorry you have so much going on right now. I hate to wait for things. Take care! Nan
  3. Sam, I have been thinking about you. Have you heard back from your biopsy yet? Take Care! Nan
  4. nan

    Insurance Approval

    Mimi, This sounds great! I will keep up with on your BLOG. Nan
  5. nan

    Please Let It Be Strep Throat....

    Have you heard back from your strep test? Nan
  6. nan

    I Think I Have Problem

    Sweet, I am just checking on you. Have you had a chance to contact your doctor? Nan
  7. nan

    I Think I Have Problem

    Sweet, Please call the doctor. That is something that should be checked out. Take Care! Nan
  8. nan

    Could This Be Raynaud's?

    Patty, I think that sounds like Raynaud's. I have it and that's what my hands do. It is really painful. Keep those precious hands warm. Take Care! Nan
  9. I have Sjogren's syndrome also which causes dry mouth and eyes. My dad died in October 06 and I was thinking the same thing. People will think I don't care. I use eyedrops. If you want to email me you can and I will give you name of OTC eyedrops. Nan
  10. Today I went to get my ex-rays. I had to have chest x-rays and elbows, wrists,and hands. If I could produce tears I would have been crying. I have Sjogren's , so no tears. It's almost like they want you to stand on your head when they want the lateral, oblique....... I felt like such a wimp, but it really hurt. The technician was so kind and I didn't whine once for her. I saved it for you guys. The x-rays were at 9:30 this a.m. and I really hurt now. One more question.... I have a spot on the top of my foot that is hurting. It is red and sorta looks like a sore. Probably scleroderma related? I guess I'll get doctor to look at it. I wanted to wait until all of my tests are done before scheduling a visit with my rheumatologist here again. Take care and thanks so much for reading this. Happy Weekend! Nan
  11. I hope you feel better when you get up. I have an Edg next Tuesday to see what is causing the slow emptying of my stomach into my intestine. take care! Nan
  12. Thanks for letting us know. I hope you can get some good stress reduction techniques. That is a lot you are going through. Take care and keep us posted. Nan
  13. nan


    I too have CREST. I was just diagnosed in December. I itch a lot too!!!!! My head itches like crazy!! My back and stomach itch like crazy!!!!!!! It's a burning itchy on my back and stomach. I put a lot of lotion on my back and stomach. Some relief. I can't figure out what to do for my head. I will ask my doctor. Does your hair fall out too?
  14. Welcome, I am so sorry to hear that your husband is so sick. I have scleroderma and the main area internally that has been affected is my digestive tract. It sounds like your husband really needs a GI doctor. I have horrible times swallowing. I am on 3 meds for acid reflux. I am also quite constipated. Currently I am waiting to have a scope done. I had a gastric emptying study done 2 weeks ago and they found that I am slow emptying from my stomach to small intestine. I also have watermelon stomach which can go along with scleroderma.( lesions that bleed spontaneously are in the stomach, on an x-ray they look like the lines on a watermelon) I have lots of nausea, bloating, and some pain. I have never been as sick as your husband. I hope that you can find some answers and that your husband feels better soon. Nan
  15. Sam, I was just diagnosed with CREST and my fingers hurt a lot and so do my hands. Sometimes the tips of my fingers feel like I am being stabbed. Right now while I am typing the tips of my fingers hurt. I would definitely ask your rheumatologist about it. Sorry you're hurting so much. My fingers don't bend, but I would think that people who have CREST could have that too. Of course, I am not a doctor so don't count on my being right. Nan
  16. nan

    Red Patch On Roof Of Mouth

    I agree with Heidi. Also, I have Sjogren's syndrome and get red spots in my mouth that are sore. Or it could be thrush( yeast infection) The corners of my mouth are red and cracked open most of the time. I think that is due to my Sjogren's. I am not sure about the shrinking mouth. I hope you can get some answers soon. Nan
  17. nan

    Sclero Docs

    Hi, Johns Hopkins does have a Scleroderma Specialty Center. I saw a doctor in the rheumatology department there, but they do have a center. I am not sure if it specializes in juvenile scleroderma. Good Luck, Nan
  18. nan

    Questions About Blood Test Results

    Hi, I agree with Sweet. In 1998 I was diagnosed with Sjogren's, Raynaud's, and Fibromyalgia. When I had bloodwork in 2006 everything was within normal range. Except by this time I also had watermelon stomach which showed up in 2004. Watermelon stomach is strongly connected with scleroderma. My rheumatologist didn't really take it seriously because my bloodwork was normal. He kept saying that it wasn't really important what I had as long as I had my symptons treated. My question was how can you have an autoimmune disease and have it go away? My understanding is that once you have it , you have it. Well to make a long story a bit shorter I went to a rheumatologist at Johns Hopkins. Knowing that all of my bloodwork was within normal range she still diagnosed me with CREST(limited scleroderma), Sjogren's, and Fibromyalgia. She took 16 vials of blood and 4 urine samples. The only one that wasn't normal was my ANA and that was high. So I guess my point is you need to find a doctor that will listen to you. It doesn't always show up in the bloodwork. Go for it and I send hugs your way! You have had quite a struggle. Nan
  19. nan

    Bad Day

    Bless You! I just read this after I saw your response to my x-ray dilemma. I am so sorry you are going through so much pain!!! I don't know about the combination of medications. I would check with your doctor or a pharmacist. You definitely need your rheumatologist to give you something better for pain. I got sick in 1998 with Sjogren's , Fibromyalgia, Raynaud's, and GERD. My son was 5 turning 6. I hated the fact that he saw me so sick. At that point I was pretty fortunate because I would have flares and I wasn't consistently messed up. Ever since my major GI bleed in 2004 I have pretty much been messed up all of the time. Some days much worse than others. I don't have my periods( hysterectomy in 2000) but I believe if I was having them that it would increase the problems of scleroderma. How many little angels do you have? You are in my thoughts. I send a big hug your way! Nan
  20. Sweet and barefut, Thanks to both of you for your replies. It helps to get feedback from scleroderma buddies! This morning I am still a bit sore. I am going to go pool walk and see what happens. It usually helps. Take care of yourselves, Nan
  21. nan

    My Right Heart Cath

    Vee, That's wonderful!!! Have a great weekend! Nan
  22. nan

    Gi Tests

    Hi, Thanks for your note. I found out that I have watermelon stomach when my hemoglobin went down to 6.1 and they scoped me. It can only be seen when you are scoped. It doesn't mean your stomach gets fat like a watermelon. It's essentially the "T" part of CREST in your stomach. Does that make sense? Oh, I started having esophageal problems in 1998. Watermelon stomach was diagnosed in 2004. Nan
  23. Michael, Thanks for your encouraging words! I will check out the stem cell info. I think the scariest thing about this disease is that you never know what is lurking in the shadows. I am trying to take a day at a time. Take Care! Nan
  24. Hi, I found out today that I do have delayed emptying of my stomach. I have to do an endoscopy next. When I heard the message I started crying. I think I might still be in denial about my diagnosis. I had just been to pick up the orders to have chest x-ray, elbow, wrist, and hand x-rays, PFT, and echocardiogram. Seeing my name with diagnosis of scleroderma and to check for pulmonary fibrosis and pulmonary hypertension was so weird. Thanks for listening! The good news is that I just saved a bunch of money on my car insurance! :D Pretty weak joke, but I thought I would try. I have many blessings and I will focus on those. Take Care everybody! Nan P.S. I do x-rays tomorrow or Friday and PFT and echocardiogram on Tuesday. My husband had surgery on his right elbow last Friday. For once I can take care of him. Bless him! My son is having oral surgery on Jan.26th. Thank heavens we have health insurance!!!!