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jad12

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About jad12

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    Senior Bronze Member

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    New Zealand
  1. Losing Balance

    Well done, debonair-susie. :)
  2. I don't like winter either, it was part of the draw to NZ. I am also hoping for a mild course, thank you for the kind thought! I wish for you the best of results as well!
  3. Losing Balance

    Let us know how it goes. At least you have an explanation!
  4. I'm not a doctor but I'm happy to share my thoughts. I didn't take their word for it, I looked up all the symptoms and indicators. I unfortunately definitely have diffuse. Rapidity is part of it. Having SCL-70 instead of anti-centromere is a big tell. They are almost always mutually exclusive, a very few people might have both antibodies I read somewhere, but I have just SCL-70. I just had myself tested for anti-RNA polymerase III to see how much at risk of renal failure I am. I haven't got that result back yet. I understand some people don't test positive for SCL-70 or anti-centromeres and still have scleroderma, but with me it's pretty cut and dried. Now especially that it's marching up my arms and I just got diagnosed not that long ago. It was just six months ago I noticed the Raynaud's and shortly after the thickening skin on the back of my hands. By the way, I grew up in Ontario. :)
  5. I ended up asking the people who booked me for the echocardiogram while I was at the hospital and she was quite enthusiastically in his favour, so there we go. I also went down to his office after the echo to drop a copy of all my records off (since I was in the building anyway). :emoticons-clap: I didn't get a glimpse of him because he was off sick for the day, but I DID talk to his scheduler who said I could have an earlier appointment if I were willing to drive there instead of waiting until he came by closer once a month so of course I said I'd be willing to drive back again. My boss will be less than pleased unless it takes place on a holiday but oh well. I totally forgot to ask the echo tech what she thought of him. So all up it was a worthwhile trip. I won't know how the echo went until the doctor gets to see it but the technician didn't seem disturbed by anything. I don't usually cook, the hubby does. At least you can MAKE potatoes, lol.
  6. Wired on Medications

    That's a really good poem.
  7. Thanks Judyt, I've been wondering how to find out. I've googled him with no luck and asked an ER nurse who works there but she didn't know him and I asked Hubby's specialist in Auckland who also didn't know him. I thought I might try to track down his office at the hospital in Tauranga today while I am there (visions of stalkers) but I'm not sure what I would do when I found it. Any suggestions? Also I am not sure what good he'd do anyway since I can't see much that looks very promising medication wise anyway though I would still like his opinion on minocin and plasmapheresis since I still have yet to read an actual study that rules it out.
  8. And oh yeah, I got a letter today that said I'd hopefully get to see a rheumatologist in the next six months but if not I'd be referred back to my general practitioner. :angry: It says if my condition worsens I can see my general practitioner who may refer me again for a more urgent assessment. I don't feel very urgent but on the other hand I don't like the wait either. I suppose it may work out well since it gives me time to get all the tests done first including, I hope, the CT scan of my lungs. As I said my echo cardiogram is tomorrow. Fingers crossed for the old ticker! I'm not sure what a spoon smiley means but hey!
  9. Thanks for the update, I was trying to find definitive proof it's ineffective. I did read about the original study which wasn't anywhere good enough to tell one way or the other. Like you, I am very fit, my ideal weight too (though I won't be if I keep up all this junk I was eating the last two weeks!), never smoked and have decreased lung diffusion (the scan to see if it's ground glass has been ordered so I'll find out) My lungs are currently 58 percent. Cyclophosphamide sounds like it may stabilize the lungs. (I'd be happy with stable). Do you know anything about plasmapheresis as a treatment? Or have any links to anything? Thanks a lot.
  10. I'm reading the trials and results from links here. Has anyone tried the antibiotic route? I was bitten by a tick a loooong time ago in Virginia (like about 18 years ago!) Are there any more studies on Minocycline? How about Cyclophosphamide? I'm trying to get some idea of what may help me?
  11. Thanks you guys. I'll let you know how it goes. I prefer corn flakes. Yeah, I am eating all my favourites but also trying to keep within my pant size but that went right out the window this morning when Hubby made me a huge..HUGE...plate of bacon and pancakes all drizzled with Canadian maple syrup to cheer me up (on top of the french toast etc he made me on the weekend!). I ate every bite too. He knows my weak spots.
  12. This stinks. I was hoping the thickening would stop at my elbows but I feel pulling in my upper arms to my arm pit now. My hands are worse too. I'm going for the echocardiogram Thursday. This disease is working fast. On the plus side I talked to my general practitioner and he is going to run education seminars for the staff at his practice and he is reading up on the disease. He also gave me his email and is happy for me to ask him questions and said he will help me interpret any test results. My husband is being very supportive. I am eating all my favarite foods in case some day I can't but I am finding myself crying quite a lot.
  13. What's the best thing to do?

    I feel sorry for my husband- he's got to put up with knowing I have this. So far he's been very brave but it's got to be hard on him. He's also taking time off work to ferry me to the city even though he is head of his department and so very busy. Your life sounds very hectic and I can understand the pressure you feel financially and emotionally. I hope things get easier for you.
  14. Bad day today

    Sorry you had a bad day. :( Do you think a push bike might help assist in the walk? A gentle swim might be better on bad days, maybe in warm water if you have a pool nearby that has a hot water pool. I don't think they would let the dog in but you could try.
  15. Thanks for the link. We normally munch out on yum char whenever we're in a city big enough to have it. This city usually doesn't. We did find two yum char places, one of which is due to open tomorrow (yes, tomorrow, grrr) and one probably within the month. This is a pleasant surprise and we're going back in a couple weeks just to eat there. We may as well do that for my echocardiogram, that's about in that time frame. Anyway, the man gets a little bearish when he's hungry and he had food on his mind, lol. There was this fantastic looking food coming out of this place, right? I mean yuuuuummmmyyyy looking gourmet pizza, huge golden fries, various meaty looking things... (there was seating on the street so I could see how nice the food looked) And it was packed. Obviously a local favourite. "Let's eat here!" I said. But noooo, hubby wanted to try (are we allowed to post restaurant names on here?) anyway, the place RIGHT NEXT DOOR to it, a chain, because he'd always wondered what it was like. There were three other people in sight in the whole place. As soon as we sat down I said, "This is a mistake!" and boy oh boy was it. I ended up leaving most of mine on the plate. How can you ruin a bacon, lettuce tomato sandwich I ask you? His chicken was no better. I very rarely eat out, so when I do, I like it to be good. That was literally the worst meal I have been served in about the last ten years. Lucky for them they didn't ask how it was because I intended to gently tell them there was a reason the place next door got all the business. :P The man made up for it with his famous BBQ steak and mashed potatoes for tea at home. Also for fun I went shopping even though aside from a few more pairs of warm socks I don't really need anything. I went into this one nice place and the lady talked me into trying on some trousers which I did quite like but the funny part was she kept insisting they were The Pants. If they had been a bit looser in the waist I might have even bought The Pants but I like the waist a little loose and I like to wear a belt. The Pants did fit me quite well everywhere else, haha! Another slightly amusing thing that happened today was the technician at the hospital said, "Have you been diagnosed with scleroderma?" And I thought, "Well, buddy, if I hadn't been, you'd have just given me quite a shock!"
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