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Everything posted by Susannah

  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
  16. Hi Peggy I also have had a port-a-cath in for just over a year now. Mine is in my chest on the right side, just above the breast. It was used the very next day after it was put in as I have regular blood transfusions for GAVE, so of course it was very tender at the time. Now... Im not familiar with IVIG, but I have had Illoprost, which I recieve through my port and is a treatment that lasts for 8 hours a day for 5 days. If this goes through the port too fast, it is agony (I had pain all over and the headache was dreadful). So Im wondering if this is the same for you. As soon as the p
  17. ced - I just read your post - I had been on prednisone for over a year and juat weaned off it in the last 2 months. I too didn't realise how well it worked until I came off it, now im so sore and slow and feel like such an old woman, at 37 years old Im tempted to go back on it again just to feel semi normal. Its quite upsetting that the only thing that works so well also has some very dangerous side issues, honestly, what do ya do?
  18. Where would we be if it werent for your dedication and care to this website and that of many other dedicated people. Congratulations and Thank You :D Susannah x
  19. Being on plaquenil for me hasnt increased my weight, but prednisone definately did. I had been weaning off prednisone over the last 2-3 months and finally kicked it a week ago (yay). My face was getting puffy and round and I started gaining weight. Susannah x
  20. Thats great Serena/Barefut This is a really special positon and takes a very caring heart. I know you will do well! Congratulations Susannah x
  21. That rib does sound painful! Take care peanut, Im thinking of you. Susannah x
  22. I have to have a turn I most certainly was initially affected the most on the right hand and is where I got my first Ulcer and my fingers curled the first. Now though, the left hand is catching up quick and finds it hard to tell the difference now Suannah x
  23. I agree with you KarenLee about the pedicure. I can't reach my toes to clip nails etc as my body is so constricted in the hip and knee joints, so have for the last 9 months gone and got them done professionally. My first treatment consisted of a soak in a foot spa, massage then nails clipped and finally polished but usually I only have the nails clipped and polished, which is cheaper too. I love choosing a different coloured nail varnish everytime. Celia - I personally dont recall sensations of tightening, but have found the tightening has been gradual for me over the last 2years since
  24. Wow Barbara Ive just been sitting here at my computer reading your blogs and just looked at the clock, its 1.21am. I just LOVE your writing, its so entertaining and honest . Thank you sooo much, such a delight to read. Your mini zoo sound like such a crack up. Keep Warm :D Susannah x
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