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Jaggers

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About Jaggers

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    Bronze Member
  1. Cancer has returned...

    Hi Sandy, People with scleroderma seem to be born fighters, stay strong and we will see you at rainbow bridge
  2. Mini stroke

    Thanks everyone, I am going to look at that link and read up on it. I see my lung specialist on the 30th and skin and joint spec early August and was going to inform them. lol I have a new problem and was wondering if anyone else has had this. I'm getting blisters on both hands and shoulders which is now peeling like sun burn. I wish I could blame the chest infections on the weather but its been a mild winter, haven't had to have the heater on much at all, even had windows open, that's how nice it's been, even laugh when my cousin in Bulli tells me they are freezing when its 17 degree loL. Down here that's when the t shirt and shorts come out. I also got a early 50th birthday present, a Note Book and am getting use to a smaller screen. Cheers Jagger
  3. Mini stroke

    Hi All, It's been a long while since I've been here, for awhile I didn't have a computer as the old one died and couldn't remember the addie for here as it was saved on the other. But thanks to a friend she gave me her old laptop to use. Two and a 1/2 months ago I had a massive chest infection and while battling that I had couple of mini strokes and was told that they think the scleroderma has gone to my brain. I had been sent for tests to see if there was any blockage but there was a mix up with myself and another person; she was an in patient and I was an out patient. The gentleman who was running the scan didn't want to listen; he kept trying to lay me down which started the coughing and would tell me that he would have to send me back up to the ward; he just wouldn't listen, in the end he cracked it. He didn't complete the scan and said he would do it when the coughing settled. I got wheeled back outside 5 minutes later, got told I was finished, told them it hadn't been finished and again was told it was fine. So when I went to my appointment with the specialist who was treating me for the mini strokes, he informed me that the scans were not completed only the right side was done and he had been interested in the left side as my speech was affected along with lost of strength on the right side. And said well doesn't matter you can't be operated on, just keep taking the aspirin daily. I left the hospital so angry by his attitude I will not be seeing him again. I promise I won't be a stranger here now that I have found you again
  4. Rest in Peace...Life Before Scleroderma

    Hi Amanda, I miss my old life too but changes in my life whether good or bad will always happen and can't be stopped as much I would love to stop this blasted thing I was luckly I had a break and was able to walk unaided and breath without the struggle. I look toward the future and whatever comes and look forward to that next break when it comes. The things you miss doing like the washing up or doing the laundry or just walking to the shops or the one I miss the most getting a bath and soaking and to be able to get yourself out. I did all those things on my break and will again. Cheers, Jaggers
  5. My break is over.

    Thanks Joelf and Amanda, So do I; at the moment every bone is hurting it's letting me know it's back.
  6. It's been awhile

    Thanks Joelf, but my break is over it lasted nearly 10 weeks and was great to feel nearly normal and to be able to walk again. It was what I missed the most; now looking forward to my next break.
  7. My break is over.

    Hi all, After nearly 10 weeks of not struggling to breathe and to walk more than a few feet it's over. I saw my lung specialist last week he couldn't get over how well I looked and asked what had made the changes. I said I didn't know and really didn't care; was glad for the rest from the coughing, wheezing and breathing problems. It's got me wondering how long the first break would've lasted if I hadn't been scratched by a cat and got cat scratch disease, so back to struggling to get a breath while just sitting looking forward to my next break and I am hoping it will last even longer then this one did.
  8. Another Scleroderma case

    Hi Steve and welcome to the forum. Born and bred in Sydney, moved to Tasmania 6 years ago; I've had Raynard's ever since I was kid (makes the fingers,toes and lips go a lovely shade of blue). Around 4 years ago I was diagnosed with Scleroderma; I was lucky my general practitioner sent me to a lung specialist who is studying this disease and as soon as I walked in he asked how long I had it as my face showed signs of it. For me the effective drug that works on me is chemo; first time treatment went for 22 months then next went for 9 months and was only stopped because I had a reaction to the last treatment so they tried Iloprost which had to be stopped 3 hours into the treatment and I can say I will never have that again. I've told them I would rather have the chemo again and I'm back on it for the last 3 months and have to have a high dose of steroids before they begin the treatment.
  9. Alive and Kicking!

    Welcome back Sandy, here's to a much healthier New Year and congrats on the safe arrival of your 1st grand daughter. What a lovely gift to receive on holiday morning!
  10. It's been awhile

    Week 8 was a little breathless and wheezy and the odd coughing bout over the weekend but it seems to have settled again, The chemo treatment is double along with high doses of steriods before it starts has stopped any reaction from happening, Even the nursing staff made comments on how much better I looked and sounded they couldn't get over the change as they have known me for 3 years
  11. It's been awhile

    Hi Robyn, It was great though in the end we didn't stay in Melbourne. Went on up to Sydney, dropped in on mates, had a look at some miniature horses and went to a show where a couple of friends did really well.
  12. It's been awhile

    Looking forward to getting to know everyone again; it's been 7 weeks now of having no problems with my breathing, I've had the odd cough but that's it, so have been pushing myself over the weekend. I haven't used my walker and done a bit of walking on level ground, for me I can cope with the pain it was the struggling to breathe and no breaks from the coughing. Just taking each break and not worrying about when it will come to an end. Just enjoying.
  13. It's been awhile

    Thanks Robyn, First real holiday in years. When does the avarta change has put in an ace a sunset over Western Australia my home state.
  14. It's been awhile

    Hi All, It's been awhile so just let me reintroduce myself. I'm Jaggers and wishing everyone a Happy Holidays and a Happy New Year, I'm off to Melbourne for a few days with a mate leaving late afternoon on holiday day, so cheers all and see you all in the New Year Jaggers
  15. Hi all, Not looking forward to tomorrow, have my monthly blood tests to do and since the 18th of February I have had both gastro and vomiting. I had thought it had stopped after day 5 but it came back within a day. Before I had blood clots form around my port and under my left arm. The bloods were done before the chemo started, since then the blood tests are done down on ground floor of the hospital the week before chemo. But they don't/ can't access the port so they look for a vein in my chest as no one can find a vein in my arms. Not being able to be hydrated makes it all that much harder and the skin is highly sensitive. The ladies in pathology are lovely and never want to push to get the blood, but it's got to be done. Bright side is this time around chemo is only for a year hopefully. The last one was for 22 months, I also see my rheumatologist tomorrow for a check up and injections into my shoulder joints plus have to tell her about the toes going black! This has never happened before well. Well that's my sook for the day
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