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Susannah

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About Susannah

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  • Location
    Blenheim, New Zealand

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  1. Has anybody experienced complete healing / reversal from scleroderma?
  2. Hello again, and thankyou all so much for your encouragement and well wishes. Its really so nice to post something that has gone well for a change as so much doesn't with this disease. Nina - Sorry to take so long to reply to you. Im sorry to hear of your trouble, its such a pain isnt it!. I will try to contact my gastro doctor over the next few days and find out as much as I can about the 'banding' technique for you. Im not aware of anything online, so far at least I havnt been able to find anything, but will keep trying. My own bleeding seemed to come from the centre to lower
  3. Hi All We moved house and I just couldn't seem to get the connection here again, then when I did I couldn't remember my password etc. I'm a bit slow at times and realized I could send an email to one of our lovely experts and hey presto, finally success! Its been a while since I posted and I'm happy to say there's no major dramas for 7 months, yippee. Just to refresh some memories, I'd gone through 18 months of blood transfusions and stomach treatment usually in the form of a laser (APC) for GAVE (Gastri Antral Vascular Ecstasia) or in short Watermelon Stomach. I've had more than 20
  4. Hello I only just discovered that I have a dangerously low vitamin D count. It showed to be 14 instead of being within the 50-100 range, so have been put on tablets (add another one to the pile hehe) once per day for 1 month, then 1 per month for 2 months. Ive no idea what happens after that. I have 3 weekly blood tests via port-a-cath, so it will be re tested each time to see how its going. I haven't read a whole lot about vitamin D deficiency but gather it is the cause of a lot of issues. I wouldn't have had any clue that I have this kind of deficiency as there was nothing really obv
  5. I used to push my self in more ways than just excercise and truly believe this has played a huge part in my becoming ill. Now days I am learning to listen to my body and it is working. Im learning to give up the 'shoulds' and 'should nots' and just do whatever I feel at that given moment, which ultimately adds to the peace and rest in my body and is very healing. I have never felt better (since becoming ill that is - hehe). So yeah, as Omaeva said, Balance is the key. There is no magic fomula, just what is right and works for you. Ive come to Accept that I can no longer do what I used to
  6. Hi Debra Sorry to hear you are going through this, it is certainly a very challenging sympton of this disease to experience and not easily solved. Ive had a port-a-cath in for a year now. I have GAVE too, quite severe. I have a blood test fortnightly, and the odd iron infusion. I just came home tonight from a 5 day course of an Illoprost infusion. Ive had over 20 blood transfusions in the last year whilst trying to treat the GAVE. Unfortunately after 8 laser treatments on the stomach, it still isnt cured. I have another lot in 3 weeks. I love my port for convenience sake and ease of pa
  7. Well heres another version to add to the confusion. I always thought it was pronounced ' Ray-Nowds' and everyone I know here in NZ sounds it the same. Boy, we really need to be re-educated Susannah x
  8. Hello All Ive had the itches from the beginning of my symptoms 2 1/2 years ago and are pretty much used to it now. Im definately with peanut regarding not showering so often. I itch like crazy afterwards, and have gotten used to not having one daily. The skin changes have slowed down/elliminated my oil and sweat production which makes it possible to skip several days and just have a daily sink wash of major areas. I never get wiffy my hubby washes my feet each night as I can't even reach them anyhow! I got an emolient cream from my dermatologist which is thick, almost as thick as petro
  9. Hi Dave As soon as I was first given my cocktail of medication for this illness, I was told, NEVER to eat or drink Grapefruit Juice due to the reaction it can have. Back in my athletic days, I drank water til it came out my ears, but now I just dont like it much, mainly I think because of my stomach issues, it makes me nauseous. I love 'Apple and Pear Juice' and 'Apple and Nectarine Juice', the latter is also esp good for the bowel :rolleyes: . But im not too aware about which juices contains citric acid sorry. Susannah x
  10. Hi all Barbara - I get attacks in my tongue too, also lips and ears when it is cold, so I know how you feel! Susannah x
  11. Dear Peggy Im am so, so glad to hear that you dont have a blood clot. That is such a relief! Im thinking of you and hope you get some much needed painrelief. Big Hugs Susannah x
  12. I asked my rheumatologist last week if I could have Illoprost more often than yearly, as im finding I need it, and he is open to it, so thats great! Anything to help me get through the cold winter months a! :D Susannah x
  13. Hi nan Ive had more than 20 blood transfusions over the last 18 months, and 8 sessions of lazer treatment, 9 counting this coming Thursday. Half of those were done with APC and the rest, also my doctors favourite method was done with 'The Snare'. Its his own invention and it definately seems to have a better effect. Unfortunately I can't remember why exactly it is different and better than APC, but I can find out. He says he doesn't understand why its not practiced worldwide because it is so much easier! Im just glad it works! Mind you, with this disease, Im finding its never
  14. Sadie - Getting a Port was the best thing I ever done, i love it and Ive never had an infection (touch wood ). Susannah x
  15. Hi Hilda Its so nice to meet you! By your post I understand that you are having Illoprost infusions every 6 weeks for 4 says, is that correct? I have it once a year for 5 days, but as my disease gets worse my rheumatologist is increasing it to more often. I understand it is suppose to you warm up the body by opening the blood vessels of which I did feel for a couple of days whilst having it, but looking back I realise I havnt had any raynauds flares/attacks for the whole year that make the hands go white and numb under certain conditions. Some people do need this more often and that
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