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jeannie mcc

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Everything posted by jeannie mcc

  1. Hey Smurfette, I somehow must have lost my first reply. No, no reaction to the infusion unless you count a brief spell of feeling cold and pain in the arm 5 minutes or so after the infusion has finished. I think the doctor may have chosen Boniva because that's what I was on when I could still do the oral route. I'll be interested in the DEXA results too 'cause so far they've all been in the normal range. Too weird~ The doctor says it doesn't matter if they are in the normal range, the compression fractures indicate osteoporosis / idiopathic metabolic bone disease. Hmmm... :h
  2. Hey KarenLee, If my bingo wings get any bigger, I'm changing my moniker to The Flying Fox!
  3. Oh Shari! Have you come to the right place. I have the form of sclero Janey was talking about: systemic sclerosis sine scleroderma. It took a while to get diagnosed and how that happened was that I was able to go to a major center where they did PFT's, Chest CT and X-Rays, tons (OK, gallons of blood work), esophageal and larynx studies, 24-hr acid reflux study, bubble and regular echocardiograms, nuclear studies for lung diffusion and I forget what else. So, my diagnosis was based on high ANA with nucleolar pattern, teleangectasias, capillary dropout on my fingers, observable
  4. Oh, you all, I just love this forum! I don't even own a pair of sandals! As for sleeveless and short-sleeved shirts, nah, even without the chill factor, my 'bingo wings' are better kept covered. Hebden Bridge, we had good friends from there. My husband's Gran was from Stainland. Himself did his earlier education at the Royal Lancaster Grammar School and Uni in Huddersfield. Oh, Tru, I love you! "Summer moments" indeed! Huh, Janey, those excepts about vasculitis and Raynaud's make a great deal of sense~ Funny how cold they keep doctors' offices, rehab facilities, and hospitals
  5. Congratulations! Retirement is wonderful. :D
  6. Huh, I wonder why the cod liver oil ones are worse... I'll have to ask my kid if she knows. We give a fish oil capsule to our dogs every other day. One of them mouths it until she can maneuver it between her teeth and pops it. The oldest one is eleventy-seven (11 dog years x 7 human years) and has no health problems at all. She bounces around like a pup. Fish oil must be really good stuff!
  7. Oh Peggy, aren't hot flashes just the icing on our cakes?! What I really enjoy is getting really chilled from being soaked to the skin... <_< To avoid waking my husband up, I keep a spare pair of PJ's in the spare bedroom. I go in there and get changed and then crawl in that bed for the rest of the night. (I also keep dog treats in a jar in there to bribe a nice warm dog to snuggle up.) I keep a pair of wooly gloves on top of the refrigerator, not just in the O2 pack! Actually, I have them scattered all over the place. And I went to the home improvement store and bought several
  8. Dear love, I'll bet if you ran a poll with all of us who visit/post here, you'd find we've all had at least one rheumatologist who didn't diagnose sclero. I sure did. His plan after the consult and blood work was "reassure re the high ANA". That rheumatologist was also Board certified. I suppose rheumatology is such an enormously broad field that some tolerance for a doctor's misguided skepticism about 'self-diagnosed sclero' might be in order (but I didn't have much!). Three years less a month later, I was diagnosed with: systemic sclerosis sine scleroderma, interstitial lung
  9. Hi All, I don't know what vasculitis is and how it differs from Raynauds, but I'll sure look it up. Boy, sclero sure makes competent researchers out of all of us, doesn't it? ;) Tru, stress definitely could have been a factor! I had 5 contractors coming and going to give us bids on central A/C. Just thinking about spending that kind of money gives me a major panic attack, but months of 'artificial hot flashes' every summer is such a bummer. My hubby works in super-cold A/C and just about dies when he comes home to the hot house. Peggy, I hear you on these sub-artic shops, etc
  10. After reading the thread about seeing a nuitritionist for reflux and seeing how many people use fish oil and/or flax seed, I thought I'd share what my daughter, the pharmacist said: Fish oil caps - keeping them in the freezer will stop you from burping the horrible fishy taste. They don't dissove before they get where they are supposed to be. Shake the bottle often as you are freezing them to keep them from sticking. Flax seed - has more types of the Omegas than fish oil and is often better tolerated. JJ
  11. Changes? Yes. Both for the better and the worse~ The one really good change is that I seem to be developing a fairly wacky sense of humor. If you don't laugh, you might cry! For the worse? Well, the "leave me alone, I just want to crawl in my shell" times. It's hard enough on our family and friends, as it is, but shutting them out is not good. However, there are times when it takes all your energy just to deal with yourself, never mind anyone or anything else. I'm incredibly fortunate in my F&F's. The statistics on the # of husbands who stick by chronically ill wives are pretty
  12. Hi Lizzie, Sure do - my husband is from the Sovereign Kingdom of Yorkshire, born in Halifax, educated in Huddersfield. And you know what Friday is, don't you? Yorkshire Day! We live on the left side of the pond now and it's the 17th straight day with temperatures above 33ºC. JJ
  13. OK, why, when it is 95ºF plus out there and we have no A/C, are my hands and feet cold? NO, I am not clutching a big glass of iced tea in either my hands OR my feet, folks. I thought Raynaud's was only supposed to kick in upon exposure to cold~ JJ-Knitter (Ayup, it's wool on the knitting needles!)
  14. Hi Smurfette! I'm getting Boniva infusions because I have compression Fx's in my back and all the GI/Esophageal stuff which was making taking the oral version problematic. The insurance company never questioned it even though I too am only 800, just having had a birthday. Next DEXA scan is in Sept. so I'll post how it goes. It was really interesting to read about the esophageal spasms people have and how they are treated. I thought my first one was a heart too! LOL JJ
  15. Sadie's passing is a great loss to our sclero family~ I'll continue to hold her and her family, as well as all of you, in the Light. JJ
  16. Hey Mando! The variant you might have could be Systemic Sclerosis sine Scleroderma (SSc sine Sc). You can get any and all of the things that go along with the other forms of scleroderma, but as the name suggests, you just don't have the skin thickening. It took me a couple of years to get diagnosed and in the meantime I was misdiagnosed with pneumonia twice and asthma. (Nope, no reactive airway disease at all~) I had been sent to a rheumatologist but I think he wrote off the possibility of scleroderma because of my lovely supple skin. ;-) The aches and pains were either PTSD or fi
  17. Dear Sadie, Thank you, thank you for sharing! Everything you post is helpful to someone and you take a lot of the fright out of things. Keep fighting and we'll all be cheering you on to flunk hospice. Love and best wishes, JJ
  18. Hi Y'all, I get really sore and stiff too, especially legs, back, hips and at night. Never thought of trying bananas though! My husband eats one a day to keep away gout (really works well for him). I'm just going to go make a banananana smoothie. the trouble is not how to spell it, but how to stop spelling it... Hugs, JJ
  19. Did anyone else see the news item on orphan drug status being given to a drug that is being developed from bovine collagen to treat SSc? It's supposed to be in Ph. 2 trials at the University of Tenn. and other places. Apparently it will be administered orally and is supposed to desensitize the autoimmune system and its response to Type 1 Collagen. Any thoughts?
  20. This article is written by a lawyer in one of the Canadian Maritime Provinces - I'd be extremely careful, no matter where you live, to do more research on your labor laws regarding this matter before coming to a decision that can have such far-reaching consequences. My own gut feeling (no GI issues referred to here LOL) is that no matter what you think your protections are under the law, once you have given "negative" health information out, you have placed yourself at some risk. What's better? Not saying anything more than you absolutely have to (and any time sooner than you absolutely
  21. I was offered one too - but they persisted in trying to teach me about asthma, which wasn't my diagnosis at all (or I wouldn't be here, would I?)! I finally got them to stop calling, but somebody must have sold my name/address because then I started getting junk mail from drug companies - still dealing with asthma. Oh boy, frustrating? Yes.
  22. Hi Barbara! My hubby and son both have sleep apnea and uses a CPAP. They tried the hubby on the full face one with very negative results! Both he and the son use one that just covers the nose and uses kind of a webbed, slightly elastic band to hold it on. The hubby had the same problems you are describing and what finally worked for him was to get the SMALLEST size they had. Now, this man ain't tiny and his nose is a truly "outstanding" feature. You'd have thought no way - he needs an XXL. Nope, it seems the small plastic nose piece actually nestles into the folds between his nose an
  23. Hi Loren, Looks like a consensus - not much on X-Rays but ILD on chest CT's. Me, too. I'm with everyone else in thinking you should tell your rheumatologist and ask to see a sclero-knowledgeable pulmonologist for a thorough work-up. JJ
  24. Hi Celia, I was diagnosed with PH about a year and a half ago. Like Janey, my SOB wasn't/isn't 24/7, it's just with exertion. I definitely can't talk and walk at the same time, but I can walk and chew gum! My echo's showed moderate PH, but I was fortunate in having the doctors insist on a RH catheterization before starting treatment an it showed mild PH. :rolleyes: It's not a real fun procedure, but not all that bad and gives actual pressures, with no technician bias of interpretation, and a definitive answer on whether or not you have PH and to what degree if you do. Me? I'd
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