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About Helen

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  1. Shelley, Very sorry for your loss. Thinking of you. Helen
  2. Thanks everyone for the warm wishes. I'm keeping my fingers crossed. Sending good thoughts to you all.
  3. Just an update on my toe. I went into hospital for 4 days of Iloprost infusions. While in there the doctors sent pictures of my ulcers to a Brisbane hospital - 700klms away. They said to send me down to get a stent in my leg to improve blood flow to my foot. So the flying doctors flew me down and the procedure was done. Instantly my foot was nice and pink, whereas before it was quite white. So now a few weeks later I have basically no pain in my heel or toe. The heel seems to be healing, will have to wait and see with the toe as the end is black, I think it will have to heal from the inside. I
  4. Yes Shelley we are a weird bunch :). Before this disease the thought of having a toe removed would have been shocking. I have had lots of different issues and my life has changed drastically over the last 7 years but this toe has put everything else in the background. I always try to stay positive but this has tested me more than anything else. I think I need better pain management...lol. It's so good to have this site to go to and when I hear what people like Amanda are going through I feel like a bit of a crybaby. Thanks again Helen
  5. Thanks everyone for your replies. As this was my first one, I wasn't sure what to do. If I get another one I will be much more aware of what treatment to use. I also have one under my heel, but that doesn't seem to be getting any worse. Yes Shelley, I would be quite happy if they remove it. It is by far the worse thing I am dealing with at the moment. Kind regards Helen
  6. Hi Everyone I have posted before about my toe ulcer which I have now had for 18 months. Just wondering if anyone has had one that has cleared up. I am seriously considering getting the top of my toe removed as I can't see it ever getting better. Three weeks ago I had 4 days of Illoprost Infusions followed by a stent put in a vein in my leg to improve circulation, which has worked well. At least if I get my toe removed it should heal with the improved circulation. The pain of the ulcer is driving me crazy as I think it is infected once again. Would like to hear from anyone who has had a si
  7. Hi Amanda After hearing your problems mine don't seem so bad. I have also lost padding from under my feet. I do walk but when I go shopping I take a wheelie walker as it takes the weight off my feet and I can sit whenever I need to. I have to go shopping for shoes for winter so I will try the larger size and see if that helps. Thanks for the suggestion. It is good to talk to someone with similar problems. Sending sunshine your way Take care Helen
  8. Ha ha Judy, No maybe I should sent it an Unhappy Anniversary card...lol. It is on my second toe so shoes do hurt. I'll have to forget fashion and just go with comfort this winter. I went to Melbourne in October and it was the coldest they had in 40 years. I had aches I had never had before and was so glad to get home. I really don't know how people with this disease live in cold climates. I have always lived here so I am very sooky when it comes to the cold. Good luck with winter, will be thinking of you. Helen
  9. Yes Joelf, I have tried many things but willing to try anything. My main worry now is what type of shoe I can wear that will not hurt my toe. It wasn't a problem in summer but now that it is getting cool I will need to keep my feet warm. Might just have to wear socks. Regards Helen
  10. Hi everyone I just read about the scarcity of posts from Australia & NZ. Sorry, I usually only post when I have a big problem. Last one was toe ulcer which I still have 1 year later :( Not really looking forward to winter but as I live in Queensland it is not too bad. Stay warm all Helen
  11. Thanks Everyone Went to the Dr and the infection is not in the bone, so that is a relief. Am on more antibiotics....last round, and he said to keep using the Manuka Honey. So now just have to hope it doesn't take too long to heal. The worst thing is trying not to bump it (which you always seem to do when you have something sore) and worrying about people stepping on it....so painful. Hoping everyone is as well as can be expected, Helen
  12. Thanks Joelf, I was hoping not to have to deal with them either living in a warm climate :( . Will let you know how I go on Tuesday.
  13. Hi Everyone Just a bit of background first. I have Diffuse Scleroderma, Raynauds, Sjogrens and some lung involvement; started in 2006. Was just wondering if anyone has successfully treated digital ulcers. I have one on my second toe. For some reason this toe is often affected by Raynauds even in Summer. I live in Queensland Australia, so we don't have very cold weather. I have had 3 lots of antibiotics and was sent for an xray this week, to see if it has affected the bone, but don't see my doctor till Tuesday. I have been putting Manuka Honey on it every day and wanted to know if anyone
  14. Hi Snowbird I have puffy eyelids and I'm sure it's from the scleroderma. When I first got sclero it was really bad and every morning I would put cold teabags on them. Now over 4 years later they are still a bit that way(I don't think they will ever go back to normal), but nowhere near as bad as they were. I don't have bags under my eyes as the sclero has taken away most of my wrinkles...I think I would rather have the wrinkles though. Helen
  15. Hi Pat I live in Rockhampton. We don't have a rheumatologist here...surprise,surprise. I see one who comes up from Brisbane, and the first time I saw him I had to wait 2 months. If I want to see a different one I would have to travel to Brisbane. I also attend the Thoracic Medicine department at the Royal Brisbane hospital. They are in charge of my heart and lungs...they are interested in Scleroderma patients. I hope you get to see a specialist soon. Take care Helen
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