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  1. Hi, Nina! I agree with the others. If your GI thinks esophageal spasms are painless, you may want to consider 2 things: try someone else, or try to educate your doctor. I have found that my doctors like it when I come in with "new knowledge" from reading reputable journals (fortunately I am in an allied health field and have access to a teaching hospital with a great library) and, having discovered this website this week, I will take info from this as well. I go in with the attitude of, "I read this and it makes me want to ask these questions" or "What do you think about this?" or "I read
  2. Hi all-- You helped me so much with my how to arrange O2 while flying question--I thought I'd try another. My first cyclophosphamide treatment is scheduled for May 29 at 11:30. I need to anticipate what kind of help and support I'm going to need for how long---as a single mom with a 4 year old. I'm figuring I need someone to pick me up and get me home. Once I get my son to bed, do I need someone to stay with me through the night and be there in the morning when my son wakes up? Assuming child care is handled, will I need someone to take care of me that next day? What about the the day after
  3. Sarah, Thank you for letting us know whats going on. Please do take the naps. Naps are great! I hope your treatments go well for you! You will be in my thoughts! Sadie
  4. Hi all-- I am new to using Oxygen and need to fly. The rules and regulations sound confusing. One airline says you can take on portable compressors.....another says you can't because the FAA doesn't allow it. And then even if you make arrangements with the airline---how do you get past airport security? Anyone have any experience or clues about how to do this? Thanks
  5. Hi Jefa, Thanks for your greeting. I'm so happy your approaching 5 years recovery. I was thinking of starting a new "thread" asking if anyone else has had cancer and sclero as the doctors keep saying there's no established link, but the timing of mine was such that it appears to be more than coincidence. Have you ever seen this topic on the message board? I haven't had time or energy to search. I'll try to get a note in the "getting to know you" topic soon. Just had a round of chemo and got a bloody finger whacking it today (have pretty good sclerodactyly going on) so it will have to
  6. Add me to the choking group too. I've choked on about everything listed so far (including "nothing"). I sometimes get my pills stuck and just have to hack them out. Along with the choking I 've had the cough, post nasal drip, laryngitis and EVEN the label "difficult to intubate" written at the top of my hospital chart. I'll ask my Dr about the "pulled up and tethered" description. He put me on allergy meds but they aren't really doing much. I just want to say how much comfort I'm finding tonight, my first night on this forum. I tried a chat room over a year ago and got scared off by
  7. I have suffered from low back pain and swollen hands and feet to a greater or lesser extent over the past two years. I am new to this forum but was diagnosed with ovarian cancer 2 years ago and diffuse systemic scleroderma 18 months ago. Since I have the 2 diseases, I'm never positive which disease is causing the symptoms, and the neither the rheumatologist nor my oncologist act like the back pain (mostly lower, more when tired) is a common symptom. I did seem to have it even during my remission (I'm on my 3rd chemo regime now). I take pain meds as needed.
  8. I've been reading several message threads about choking as they have evolved. Now I have decided to put in my 5 cent's worth. I've had diffuse scleroderma for over 10 years now. Some years ago I found I was becoming increasingly hoarse, and periodically suffered from coughing fits. Although I've had some lung fibrosis in the base of my lungs almost since the word "go", the coughing didn't appear to come from my lungs. Someone said it was like a hair in their throat, which pretty well explains it. It was not till I had surgery in early 2004 for an unrelated condition, that something bec
  9. Wound healing after hand surgery in patients with systemic sclerosis-a retrospective analysis of 41 operations in 19 patients. In systemic sclerosis, surgery performed electively does not seem to have increased difficulty with wound healing. Even larger operations, such as wrist arthrodesis or wrist replacement, can be performed safely.PubMed. J Hand Surg [br]. 2007 Feb 1. (Also see: Digital Ulcers and Raynaud's Treatments) This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.
  10. Hi Pat, When you're a cat lover you definitely can't go without cats for long! You get withdrawal symptoms! I had my first cat when I was seven, and haven't been long without cat/s since. I was going to have 2 when I got our 3, but I couldn't leave the last lonely little one on his own. They are great mates as they've grown up together. The 2 males are stripey tabbies, and the female is a slightly stripey grey tabby; very dainty! Sam is the one in my avatar, and the other male is Pixel, as he was the smallest. Jenny is the female. When I first got the cats I wasn't ill, but unfortunately c
  11. Hi felines4ever, Welcome to the Forum! And I'm sure from your user name you must be a cat lover! Do tell us about the "furry ones". I have 3 cats all from the same litter, and you'll see one of them in my avatar. All 3 are in a photo in my album. I particularly chose a sheepskin steering wheel cover, as my hands were so sore, I could hardly touch anything without wincing. The fluffiness of the sheepskin really cushioned my hands and helped a lot. Look forward to seeing more messages from you. Warm hugs,
  12. Hi Patty, I'm sorry you had an uncomfortable experience with the angiogram! All these horrible tests we have to undergo.......!!! Just two things I noticed when reading your post. First of all, for some time I was on 120mg of Diltiazem CD, a calcium channel blocker, for high BP. As a side effect it controlled my Raynaud's well. However, last year my BP started rising a lot, so my doctor took me off the Diltiazem and put me onto Norvasc, also a calcium channel blocker. I *think* the Norvasc may have started to bring my BP down a bit, but I started getting Raynaud's again in a way I
  13. Well, got back from Mexico on Wednesday and got sick Thursday night. I had scratchy throat, dry cough and stuffy head with head ache that hurt sooooo bad. Today, day three, I threw up dry toast. I've since only eaten pop sickles. I think that since there is some drainage and such a head ache, I should see a dr. tomorrow, given that I already have a weak immune system, having been on Cellcept for almost two years. I just don't want something to go left untreated. It must be sinusitis...which would explain the headache that won't leave. I also went without supplemental O2 in Cabo
  14. Wow I looked around and maybe it is a digital pitting. It's small, but there's a dent like pin head thing in the center of it...with a callous all around it. It's on the outer index finger. I have a lot of lung involvement and Raynaud's so it fits the bill. It is not painful so I guess I just need to keep it clean...any thing else I should do with it? I will share with dr. in march. Jen
  15. I have this rough spot on my finger and it could not be a callous by any stretch of the imagination...LOL. It is small and looks like a crater kind of. It doesn't have much feeling and not tender at all. Any one know what this could be if it is even sclero related? THanks, Jen
  16. Clue to Carpal Tunnel Syndrome Found. A microscopic look at carpal tunnel syndrome may have uncovered the cause of the painful condition. In all of the carpal tunnel syndrome patients, the researchers found, the connective tissues appeared to be damaged, causing bulky fibers and scar tissue. WebMD. 11/16/06. (Also see: Skeletal Involvement}
  17. Antioxidants: New Kid on the Block for Pain Relief? Researchers found that synthetic antioxidants practically eradicated pain-like behavior in nearly three-quarters of mice with inflamed hind paws. Ohio State University, Research Communications. 11/07/06 (Also See: Pain Management and Alternative Therapies)
  18. Denelle, What medication are you on, if it's not too personal...
  19. Denelle, My DLCO is 48% and TLV is 59%. The numbers were higher a year ago, so mine are steadily declining. I've been on Cellcept and the numbers are still going down and I try my hardest at the PFTs. I feel like I am giving it all I can. My Dr has never given me a percentage of people that do not respond but let's hope that we are not one of those people. I feel better but I truly think it's because I moved to a much lower altitude. Do you require supplemental oxygen? Janey's article stated that people get lung involvement at the mean of seven years and that would be me. I had all t
  20. Patty, I am very sorry to hear about your heart problem. I just did a quick search on your condition because I really did not know about it. I wish you the very best and I hope your new medication keeps your blood pressure down. You have a wonderful weekend, ok? Lemonade, Jennifer
  21. Thanks y'all! Janey, that's exactly what I wanted...those links. Your soups...MMMM. I am making some right now in a huge crock pot. Jennifer
  22. I have GI troubles (GERD and dismotility) and lung fibrosis. So, if I were to encounter complications from the complications, what would those be? I guess I need it spelled out...turkey overkill! Jennifer ;)
  23. Patty, I love your lemonade quote! I think that you will enjoy not working and taking care of yourself, so I hope you are OK with it. My paperwork went easily, but I've heard others say it was difficult. If you can, get as many doctors as you can to complete the Physician's form. In my case, there were three, one that your employer completes, one that you complete and one for the dr. I had four doctors (cardialogist, Primary Dr., Pulmonologist and Rheumatologist) do mine. All four doctors. filled them out the same, and two of the doctors had not relationship at the time, with the other
  24. Peanut, I want to see more kittens you've done!!! I love it. Would you share with me (and the world) the results of your pfts? I want to compare and if you wanted you could just send me a private message. :) I did have private disability insurance. I still had to go through the motions of going through social security (it's complicated, I worked for the government). I was approved within two months but still must wait two years for Medicare to start, like everyone else. How's it working for me? I am very grateful. I feel better than I did and I wish I just KNEW I could blame
  25. I am curious. It does not seem that many members are on Disability. For those of you that have lung involvement, have your doctors recommended you go on Disability? I went on it within months of being diagnosed and it seems odd. I am only 39 and have been diagnosed a year and a half. Thanks, Jennifer
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