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jeannie mcc

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Everything posted by jeannie mcc

  1. Hi Clem, I haven't used it either, but couldn't tolerate the Norvasc - horrible pitting edema. I'm on Letairis now and it's going good. It seems to help the Raynauds, but I also take niacin 3x daily on the advice of my rheumatologist. That also seems to help. JJ
  2. Thanks, everybody! I'll go ahead and try the retinol prescription stuff. Bowbec, one of my complaints has been the dry flaky skin - I hadn't thought about how the retinol would help with that. When I've magically become beautiful, I'll change my avatar to a picture of me. JJ
  3. Hey Christy, No, the neurontin didn't increase my appetite any - the weight just magically appeared. I was having really awful GERD then and had to be really careful about what, when, and how much I ate. The weight gain stopped when I came off the neurontin and the extra pounds disappeared fairly quickly. Driving - I hear you on the after-effects of anything but a short drive. I used to love to drive~ Now, even a half hour and my hands especially get so sore I really have to want to go somewhere badly before I'll drive. Not so bad with the gas prices, I guess! :P JJ
  4. My mother and husband both got/get those awful leg cramps and hubby also has gout. The one thing that worked for both Mom and Himself is bananas - they have also been reliable for preventing gout attacks. One a day seems to do it. You might give it a try~ JJ
  5. I saw an article in a newsletter today that suggested topical retinol, carbon dioxide laser resurfacing, and hyaluronic acid injections have been proven clinically effective 'anti-aging' treatments. I'd sort of like to try the retinol for some of my wrinkles, but does anybody know if a medication designed to increase collagen production is safe for us sclerodermians? ~JJ~ PS: the ~'s are my crow's feet!
  6. Christy, I was on neurontin for a while when the only diagnosis I had was fibromyalgia. It did help with the fibro pain and seemed to help with the nerve pain I had on the surface of my legs. The only side effect I had with it was weight gain, but that was significant - 25 lbs in a month. At that rate, I just couldn't stay on it. Good luck with the new meds. Hope they help with no side effects. Cheery-bye! JJ
  7. Hey Sweet, I've heard that you'll never die until you finish your reading list, so keep on adding to it! I hadn't read either Stephanie Bond or Sue Grafton. Wow, I might live forever. Woohoo! JJ
  8. Hi Nina Lynn, The research seems to indicate that if a close family relative has an autoimmune disease, the chances of other members of the family developing an autoimmune disease are increased... It may not be the same disease, probably won't be, but the risk is increased somewhat. The disagreement is over how much. I have sclero and fibromyalgia. My oldest son has sarcoidosis, but he was in the WTC on 9/11 so who knows. The younger one (only 16 months younger) is fine so far. They are (gulp) 41 and soon to be 40. Here is a Marfan information on the main Sclero site. I ho
  9. Hi Tonyia, Join the gang! The Forum is a truly great place with wonderful, caring, experienced, and informed friends to help you and send you warm hugs. Cheryle and Sweet both gave you great advice. I've gotten so I lug lists with me every place and for every thing. When you are scared, tired, and/or not feeling at all well, the attention span is the first thing to go. And don't worry about doctors thinking you're crazy. If you keep reading our posts, we all have worried about that, been through it, and know we are sane. It gets to be kind of a joke, honest! Good luck wi
  10. Oh dear, I have you beat~ Got 3 sets of shelves in the bedroom, 3 walls in my "workroom" (hah hah! work??), the whole long wall in the living room and I'm trying to talk my hubby into shelves in the dining room for the cookbooks~ That shouldn't be hard 'cause he had me put up a little shelf in the bathroom to hold his cup of tea and book for his early morning reading sessions. IF I buy a lottery ticket and IF I win really big on that ticket, I'm getting glassed in shelves everywhere so I don't have to cringe in embarrassment at the clouds of dust floating down whenever anybody pulls a b
  11. I'm a reader too. I like Barbara Hambly; she does both fantasy and historical fiction. For you history buffs, her Benjamin January series set in old time New Orleans is great. Then there is Diana Gabaldon. She does a sort of time-traveller thing set in Scotland and North Carolina in the mid-to-late 1700's. I lived in the areas she talks about in Scotland and she really gets the feel of the places. Her main character is a woman doctor. There's a really nice love story running through her books. For sheer fun there's Terry Pratchett, his Discworld books are full of truths to
  12. Central vacuum system in all houses so we don't have to huff and puff and shove heavy vacuums around! And that magic glass and paint that I saw on a BBC documentary - they never get dirty, so no more buckets of water that are always cold... Since all the physicians are just exactly what we want and need, I'll go for knowledgeable, helpful, and **willing to pay** insurance companies. Well, we'll only need one, right? OOHHH!! Not just cushioned floors, but heated ones!! Oh yeah, that's the one that really does it for me. No bra, no pantyhose? It's not Sclerodermia, it's Heaven!!
  13. Squirrels? Oh my, we've got 'em! I have three Border Collies (yes, my sanity has been questioned), two of whom seem to think that if you just try hard enough, you can actually herd squirrels! The old girl gets a thinks-bubble that says: "I'm retired! You 2 kids go try. If you manage to pen those squirrels, I know a couple of cats I'd like to introduce you to." The squirrels just laugh at the dogs! I have honeysuckle, too, growing on the fence by the driveway, near my big living room window. I thought *I* saw a hummingbird, but nope, it was a "hummingbird moth" and maybe just as exci
  14. Hey Razz! Congratulations and many thanks for writing the book! Not only are you a great example to all of us, the book will be a valuable asset: inspiration, explanation, all sorts of things. Way to go!! When can we look forward to the sequel?? JJ
  15. Hi Debbie, That's a shame about your husband. I'm so sorry. This forum and our extended family is just wonderful and it gets better with everyone who joins! Warm hugs from me too! JJ
  16. Hi Gina and Kamlesh, I had a full wrap fundoplication last year and it's like having a new life. Just getting the awful GERD sorted out has made it easier to do all the other things we need to do, step by step, one problem at a time, to feel and stay as well as possible. Gina, don't give up. I don't think many of us got a quick diagnosis and most of us at one point felt the doctors were convinced it was all in our heads. :D If you can get a formal diagnosis for each problem (GERD, breathing problems, what sounds like some hand contractures), maybe from a different doctor (GI, p
  17. Hi Peggy, I hope the IVIG treatments work out great for you! You'll let us know, won't you? I'm originally from a small rural town, too. Folks there have to either travel 90 miles over mountain roads to get to anywhere with real specialists; although, in the last few years, some of the specialists do come in anywhere from once a week to once a month. So many of the people living there are getting quite elderly and there is no public transportation to the big city. There are rumors of a bus service starting up, so everyone has their fingers crossed. My mum says she would cross hers
  18. Hi Razz, Glad you liked the shawl. I knit one of those for each child in our family and circle of friends when they marry and have *their* first child. That one nearly didn't get out the door because Cat decided it was hers. I have to admit, there are days when curling up in a patch of sunshine with a nice wooly blanket would be my idea of the perfect laugh too! LOL JJ (obviously) Knitter
  19. Hey Razz, It's worth checking with your insurance to see how *they* handle it. It was actually a very helpful young lady at my insurance company who told me about it. I'd called to ask if there was an infusion version of something other than Boniva that would be on the preferred list and cheaper. I called my general practitioner to see if she could/would do it in her office. She didn't but gave me the name of a local "arthritis clinic" (the group practice of rheumatologists) who do infusions in their office setting. Hugs (gentle ones, of course!) JJ
  20. It's great news that your son is home! I hope you both get plenty of R&R as MWR activities (Morale Welfare Recreation!) during his leave! :D Tell him an old ex-Army gal says thanks for all he's doing. JJ
  21. Hi folks! I've just learned something interesting. It seems if you have the IV-infusion done in a doctor's office that's located within a hospital, the insurance companies treat the claim differently than if it is done in a doctor's office that is NOT located within a hospital. In my case, the rheumatologist, Infusion Team and pharmacy are all located within the hospital and my co-pay is $254. If I get the infusion done at a local group practice of rheumatologist doctors, my co-pay goes down to $10 (hear that? Ten!) dollars. Wow! I hope this bit of hard-earned info might be of u
  22. Hi Sheryl, Ooooh, aren't you having fun! I've been reading about low glycemic index foods. There are a lot of resources out there on the web, especially lists giving the glycemic index of various food. There are a lot of them that would be just fine for those of us that have lots of GERD. I think sometimes the doctors just put the brain in neutral while a tape loop in the back of the throat goes: you need to lose weight and exercise more, you need to lose weight and exercise more, you need to lose weight and exercise more~ I've had that without any questions about what I do eat
  23. Hi Denelle, DEXA = Dual Energy X-ray Absorptiometry and it's really simple, painless and quick. It's more sensitive than a regular X-Ray, uses less radiation, and is cheaper. If you remember to wear clothing that doesn't have zippers or other metal bits, you won't even have to put a gown on. I usually wear a sports bra, silly T-shirt, underpants, and pull-on stretch leggings. That way I don't have to change and somebody gets a laugh! Good luck with your test! JJ
  24. JJ-Knitter? Initials of first and maiden names (I'm one of 5 JJ's in the family!) Knitter? Yeah, all the time! We had to move furniture last holiday to make room for the tree. That involved 2 old blanket chests I use as window seats. Wouldn't you know it, my Hubby wouldn't rest till they were emptied. Oh deary me, they were full of knitting wool~
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