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About JJ-Knitter

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  1. Hi Beckybee, I was diagnosed with Systemic Sclerosis sine Scleroderma in the autumn of 2006. I had already developed ILD and pulmonary hypertension. I'm still going strong but in the years intervening have developed Grandma Syndrome, GI issues including a wicked spare tire and jelly belly, and worst of all, a tendency not to take anything too seriously. I was one of the first patients on Letairis, and am still on it, and have been on mycophenolate mofetil for most of the past 12 years. I have had a Nissan fundoplication but now have no peristalsis in my esophagus, so the fundoplication may be revised. My ILD is classed as moderately severe, and if my most recent echo was accurate, my PH is severe. That all sounds awful but I am still doing everything I used to, albeit slower (well, I *am*71!). So few people know much about Scleroderma and fewer still have heard of 'our' form. When you ask about what to expect you can get some pretty varied answers. What I can tell you is the quality of your life will be up to you. Attitude and doing all the things to stay healthy (good diet, lots of exercise, good sleep habits, and counseling if needed to develop good coping skills). Be a nag until your muscle/joint pain is adequately addressed. Good luck, Becky, I hope your life is as much fun as mine is. Jeannie McClelland
  2. Hi Gigi, I've agreed to participate in every study my doctors have asked me to and I think I'm up to 6 now. Three of them involve blood draws, most of them involve questionnaires, one that was investigating a possible link between pulmonary hypertension and glaucoma got me a whole morning of extensive eye exams. I think most of them wanted some level of access to my medical records. None, so far, have been trials of new medications, but I think I'd agree to that so long as it didn't change the regimen that is working so well for me. I figure that anything I can do that'll help others get quicker, better diagnoses and treatment, hey, it's worth it. JJ
  3. Oh my! I'm not sure whether your trauma or Grace's made me wince more!! Deary me~ Brave, brave ladies, the pair of you. Hope everything heals up properly for you both. Hugs and a virtual cup of hot chocolate (would that help? You can have marshmallows and/or whipped cream on top...), JJ
  4. Hi Millefleur, I'm a "sine" myself with ILD and PH and I can vouch for what Janey said: lots of new treatments available and more coming along all the time. Another good thing is once you have a diagnosis the doctors are much more willing to schedule all the tests necessary to keep an eye on things. This forum is truly a wonderful place. We all love and care for each other and each new member is a very welcome addition to our circle of friends. We can ask what seems like the dumbest questions, voice our worst fears, share all the things that go on and somebody will invariably send just the response we need. I'm sorry about your mother and that you're facing all this, but glad to have you as a new friend. JJ-Knitter (keeping fingers warm stitch by stitch :rolleyes: )
  5. My rheumatologist mentioned today that the latest chest CT showed air in the esophagus and that it shouldn't be there. We both then got distracted and I forgot to ask more about it. So I came home, Googled "air in the esophagus" and guess where it sent me?! Ayup, here. The summary said "This radiological sign, although rare, should suggest Scleroderma and may be particularly useful in patients with "systemic sclerosis sine scleroderma." Guess who has systemic sclerosis sine scleroderma... :P I love Sclero.org and this forum is just wonderful. So Hurrah for the good folks at ISN and all my fellow sclerodermians. And thanks, too! JJ
  6. We talked about all this before, and I said I'd post after the results were in from the latest DEXA. Because it was a different machine, the doctor wasn't willing to swear to it, but it looks like a year of 3-monthly Boniva infusions has at the least prevented any more loss of density and possibly improved things the tiniest bit. I recently was referred to an endocrinologist and she wants me to switch to Reclast, she seemed to think that it was the more effective medication. That'll happen in December, the insurance company being willing~ I do know I haven't had any more fractures - they did an X-ray to check because of ongoing back pain. (I didn't mention I'd recently spent several weeks heaving large and heavy pots of trees and shrubs around! ) JJ
  7. Hi Razz and all, Thanks for the input! I'm at the 15 months stage and it's not causing me any problems. I've achieved stability (not necessarily mental stability, mind you) and not had any side effects. It's kind of become my security blanket. I should have thought about the transplant folks - one of my closest friends is 10+ years on a successful kidney transplant and has taken CellCept almost the entire time. Hugs to you all! JJ
  8. How long are most people kept on CellCept? If there are no serious side effects, can a person be on it 'forever'? How about if things seem to be stable? Can it be discontinued without the scleroderma flaring up again? I know that with things like cyclophosphamide there's usually a maximum recommended treatment duration, but I don't think I've ever seen any thing like that for CellCept or Imuran. Happy Autumn to all us Northern Hemisphere folks and I guess it's hooray for Spring for the folks below the equator! JJ
  9. Hi all! Thanks to so many for responding to this. It's a question that's interested me for some time. My sense is that all of us think we were showing symptoms for a long time before getting a formal diagnosis, that it took a "constellation" of symptoms to get the correct diagnosis, and it's about 50/50 whether or not a rheumatologist made the diagnosis. I think I was more relieved than anything else when someone finally put a name to what was going on. I could find out more about a specific disease, find out what sort of tests and treatments would be involved, and take an intelligent (well, at least I hope so) part in my care and the decision making process. Retaining some control over my life is very important to me. If I could wish for two things for all of the people out there who are still struggling to get a diagnosis, it is that they get it quickly and that they are treated with dignity and respect. Best wishes and warm hugs to all of us! JJ
  10. Hi All, After reading all the posts about the difficulty in getting diagnosed with sclero, I wonder how long everybody thinks they had sclero before the diagnosis (diagnosis), and how do you tell anyhow? Me? I'm guessing less than 5 years and I'm basing that on a series of high ANA's, livedo, and the appearance of the first teleangectasia. I'd also be curious to know how many rheumatologists (*) you saw before the diagnosis and whether or not it was actually a rheumatologist who had the Eureka! moment. In my case it was a pulmonologist. (*) It was only one, but I sure made a lot of boat payments for my general practitioner's practice Warm hugs, JJ
  11. Hi love, So the rheumatologist has never heard of systemic scleroderma sine scleroderma? My skin looks fine, always has, and the only elevated blood work ever was high ANA with nucleolar pattern. The first rheumatologist I saw said the same thing yours did. Less than 2 years later, after a full work up elsewhere they said I had "SSc sine Sc", ILD, PH, significant GI problems, and fibromyalgia. Oh yeah, also teleangectasias, livedo on the legs, and nailfold capillary dropout. You might want to ask about SSc sine scleroderma when your great neurologist refers you to a more open-minded rheumatologist who is particularly interested in sclero. Lots of luck, best wishes, and let us all know how you get on! JJ
  12. Oh, Tru, you go girl!! I'm glad they accepted your offer. Too much stress for you~ If we don't stand up (or jump up and down shouting loudly) for ourselves, who will? We're all cheering for your victory. JJ
  13. Hi Razz, I do Pilates, but I pick and chose so I don't over do it. It concentrates on the core muscles and flexibility more than developing strength, but you can do most of the exercises with those big rubber ribbon things. It's worked extremely well for me over the years. Your public library might be able to get the DVD's for you. The heated pool is good, but the air when I came out was too cold and set off dear old M'sieu Raynaud and they wouldn't let me stay in it forever and just deliver my meals. :D I couldn't figure out how to manage the O2 either. I loved yoga, but I found that you've really gotta be a bit careful with any of the exercises that put you in a head down position if you have GERD. <_< With the bad back and hips, it was too much. For the hands I still use yoga. There's a book out that shows all the positions, but I don't know if I can name it in the open forum. Between it, thera-putty (for resistance), and the knitting, I'm able to keep the hands limber and the pain pretty much under control. JJ
  14. Good for you! Going to the doctor is the first and biggest step. Did you get a chance to make a rheumatologist appointment or are you waiting till the test results come back? We're all cheering for you! JJ
  15. Oh Tru, what a bummer~ Good luck with the money tree. I understand fertilizer from a bull's excrement helps them to grow real fast. ;) I had this happen to me with payroll taxes. All of a sudden they decided they'd miscoded things for months and took it all out of my next check. I threw a major wobbler and said that since they'd made the error over X-months, they could recover the money over the same period of time and if they didn't give me a check right away for the proper month's pay less 1/x of the overpayment, I'd report them to every government agency I could think of and do my best to blacken their name. I could guarantee a complete audit of their books at the very least, but I guess the sight of a menopausal female in full blown rage was what really did the trick. At least my landlord got the rent that month~ JJ
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