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About Kiwi

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    Senior Bronze Member

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  • Location
    Whangamata, New Zealand
  1. Hi all The doctors want to start me on Azathioprine long term as my lungs are worsening again. I have had cyclophosphamide in the past which stabilized them for a while but knocked me around a bit. Which is the best option? Kiwi
  2. Eos, what did you have surgery for ? Thanks, Kiwi
  3. Hi Thanks for your replies. My hands are badly clawed over at the PIP joint (middle of finger) and frozen in the joint that is on the hand, and is still getting worse. I have been googling to find surgeons who have operated on Scleroderma hands and there seems to be someone in New York with experience. I am aware that some don't agree with surgery however there is so little movement that I feel it is worth a try! New York sounds expensive though! Thanks
  4. Hi everyone, My hands are still getting worse after 5 years and now my arms don't even straighten. I have been investigating plastic surgeons here in New Zealand who specialise in complex hand surgery and have found one guy who has operated on one finger of someone with Scleroderma. Has anyone had their fingers operated on? I'm aware that New Zealand is a small country so am hoping to find info on surgeons in other countries as well. Does anyone know of any or has had any operations on their fingers/hands? Many thanks, Kiwi
  5. Hi Mammagigi Thanks for your reply. I am very hesitant to go down the IV antibiotic track, but if I can't keep the next infection at bay then I might have to. That's if they can get a needle into my tough arm! What is IV Immunoglobin? I now take probiotics (that's good bacteria) on a permanent basis so I'm monitoring that at the moment. Antibiotics strip so much from our systems. Many Thanks,
  6. Thank you for your reply Shelley. I do try to wear the splints at night, usually one at a time though as I find it a real pain if I need a drink or to go to the toilet. One is a molded plastic with soft velcro straps and the other ones are a molded putty that plastic rests against and is strapped on. One goes to the wrist and the other two are just the palm. What do the daytime splints look like? And how do you function with them? I spend about 1/2 hour a day trying to stretch fingers and go to 2 stretch classes a week and 1 massage. Are there any pictures of splints on the site?
  7. Hi everyone Thank you for your replies. It would seem that I have one of the worse cases people have seen over here.... my skin tightening the worst in my hands, arms and thighs. My fingers are frozen at right angles and very stiff which makes it very hard to do anything really. I feel a bit sad that not much attention was really paid to my hands until now (4 years with scleroderma now) and fear it is too late. In saying that my elbows don't straighten anymore either so perhaps there was just no stopping it. I can only hope that the skin will soften a bit as can sometimes happen an
  8. Hi there, Can anyone give advice on exercises to stretch out the fingers. I wear uncomfortable splints to bed and use a "power web" elastic contraption to stretch them. I also try to squeeze grip matting under the fingers while sitting to try and give them a stretch. I simply can't keep up. Does anyone have any ideas to help straighten fingers? Thanks,
  9. Hi Sweet, So sorry for such a late reply and yes it has been a long time. I have managed to give up smoking, find an amazing guy and start a business with him so been a bit busy! I am living on the Coromandel Peninsular in the north island. I managed to stave off another full blown infection with more antibiotics and am now taking probiotics (good bacteria) on an ongoing basis. Next step dermatologist and ulcer specialist. Still can't get rid of the ulcers after giving up smoking and everything! What brings you to NZ? Cheers,
  10. Hi there I seem to be constantly fighting infection popping up in my wrists, knuckles and elbows. I take antibiotics (have tried many different brands)but they don't seem to work anymore. My body doesn't seem to absorb properly. Does anyone know how to help the body absorb better? Or know about infection? Thanks, Kiwi
  11. Hi there Not much of a funny subject in my opinion! My personal experience is very similar - overnight I started having problems but lookng back I was constipated as a child as well so go figure. The leakage in my opinion is the muscles trying to work out the stool - which is difficult if the walls/muscles are thicker. What works for me (and you have to keep a close eye on it) is a daily spoon of ground linseed on my cereal (flaxseed). Also if I get a build up I reinforce it with a natural herbal tea available here in NZ. Good luck! Keep it natural and avoid laxatives I say!
  12. Thank you all for your replies.. I'm afraid I have some sad news.. I had my Follicle Stimulating Hormone test (FSH) as I "sort of" got a period and so on the 6th day (supposed to be the third) which was a few days after the "period" had stopped I got the blood test and my result is 39.1. Now I don't know a lot but I know that's bad!!! Looks like I can forget having children... :( Does anyone know about FSH?
  13. Thank you for your replies - Lisa, yours was a bit scary! I have so many questions regarding my physical ability to have children - for starters I think the chemotherapy I had has put me into early menopause, but I also question my long term ability to care for myself let alone a child. In saying that there is a feeling of missing out if I don't. New Zealand is such a small country so it's difficult to find specialists who know much about Scleroderma. All I know is that mine is still progressing and the skin is getting tighter.... Here's hoping... Thanks again, Kiwi
  14. Hello, I'm curious to hear from any women who have been able to have children that have severe skin involvement ie. tight skin on arms and legs and curled over fingers. I am 36 years old and am in two minds as to whether I can have children for starters... and if I can then could I pass on anything or even be able to take care of the baby? My hands have very limited movement in them now after 4 years with scleroderma. Hoping to hear some positive feedback!
  15. I have had ulcers for years and it's not since giving up smoking and taking Cialis they've mostly cleared up. Unfortunately it's expensive in NZ!!
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