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Alexandra

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About Alexandra

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    Surrey UK

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  1. Hello Suze and the other members on this post! I just wanted to say thank you for bringing up this topic as I am indeed having the same catheterisation procedure at The Royal Free PHT department on the 23rd of this month (April!) I have Scleroderma and pulmonary fibrosis (under the care of Dr Denton and his team and The Brompton) and have in the last few months been having a lot of new heart symptoms as well as a decrease in Lung Function,now a rather measly 27% ! I am meant to be going into the Brompton to start Cyclo but have an infection (well pneumonia in fact!) and they sent me ho
  2. Hello Sierra Sierra! Thank you for your reply!I have collected my 'red spots' gradually over the years, like a hobby! My back is worse than any where else, though my neck and chest is beginning to look mighty odd! I have had laser treatment before which did work but it seemed such a never ending process that I stopped. Love me love my skin that is what I say! Having said that...thank heavens for make up! :D Love and a hug Alex xxxxxxxxx
  3. Good evening all! I am back from a wonderful warm week in Greece,where the sun warmed my bones, my fingers were pink and I had a massage every day! Just heavenly! My dear best friend took a photograph of my sleeping on the beach and captured my 'red spots' or Telengectasia so well I thought I would let you see.This is my first attempt at attaching a photograph to a post so I hope it works! I feel it may be helpful if any new sufferers want to know what they look like, and to confirm that they are not painful at all but do just look rather 'spotty'! What are friends for?;) Much lo
  4. Hi all, just to let you know that the picture of my telengectasia is now up and running, don't be alarmed, it is huge! Thank you for your responses letting me know it wasn't viewable! ps Yesterday was my birthday...and to those lung doctors that were so very negative 7 years ago...here I am doing well! I had pizza and a glass of wine..I know I know! But amazingly my digestion worked well enough to make it go down! Well eventually :rolleyes: My love and best wishes to all of you, may today be a good day! Love Alex x
  5. Good evening all! I am back from a wonderful warm week in Greece,where the sun warmed my bones, my fingers were pink and I had a massage every day! Just heavenly! My dear best friend took a photograph of my sleeping on the beach and captured my 'red spots' or Telengectasia so well I thought I would let you see.This is my first attempt at attaching a photograph to a post so I hope it works! I feel it may be helpful if any new sufferers want to know what they look like, and to confirm that they are not painful at all but do just look rather 'spotty'! What are friends for?;) Much lo
  6. Hello Bobby! And hello to the rest of the gang! Having just got back from Greece where it was 37 degrees I am hoping that I stored enough heat to prevent me having the Iloprost!No you are right it probably doesn't work that way ;) As with most I had rotten headaches and nausea but tolerated it better going in at a more gentle rate, but have avoided it for a couple of years,and sadly having been to the Royal Free on Thursday 3rd SEPT decided that this year it's time to try again. Your poor knee,the pain sounds awful.It does seem more likely that it is tendon related as our tendons often get
  7. Oooh can I be a mitten fashion designer? I could design all sorts of colourful and fabulous extremity enhancements!Sadly though I can't knit so someone else will have to do that,but I shall wear our mittens with pride! Suddenly my life is much more interesting..thank you my fellow Raynauds gang! much love Alex xxxxxxx
  8. Hello everyone I am due to go on my heavenly holiday in Greece in a couple of weeks.My best friend treats me every year to this week, and it is a spa too!So massage and pampering! I am so very lucky to have her in my life. My worry this year though is of course swine flu (as I have pulmonary fibrosis with my scleroderma). Airports and the plane are my primary concern. My general practitioner is reluctant to give tamiflu vaccine before symptoms as some seem to be poorly after taking it.But he is keeping a very close eye on me. I think a face mask would be essential,but other than that I'm
  9. Hello everyone I am due to go on my heavenly holiday in Greece in a couple of weeks.My best friend treats me every year to this week, and it is a spa too!So massage and pampering! I am so very lucky to have her in my life. My worry this year though is of course swine flu (as I have pulmonary fibrosis with my scleroderma). Airports and the plane are my primary concern. My general practitioner is reluctant to give tamiflu vaccine before symptoms as some seem to be poorly after taking it.But he is keeping a very close eye on me. I think a face mask would be essential,but other than that I'm
  10. Hello Amanda! And the other lovely members who are also suffering from the hot burning world of reflux! I can only second what you have already heard,that a sore throat is most definitely part of the reflux.There is a condition (which I have experienced sadly) in which there is loss of voice and/or hoarseness due to acid reflux. With gut involvement in Scleroderma as you probably know, the peristalsis movement often stops altogether.This is the muscular action that helps food travel down the 'food tube'! Food hangs around for ages!I have regurgitated a bit of sandwich that I had a good 3 da
  11. Dearest Smac0719 Thank you for your reply to my story. I would love to read of your experience if and when you feel like sharing and writing.It does take some energy and time to write it all down but somehow it was a cathartic process..if only to feel.'wow I have done really well to get through this and still be alive/fighting/loving and laughing'! I think if we have just 1 or 2 friends who are close and see us for real then it is a wonderful gift.And having all these wonderful friends here on this forum is an huge added bonus! I may yet visit America and visit everyone! much love to you
  12. Hello Angel Sky It's very nice to meet you, and I hope that you find all the love and support you need here in this wonderful forum. I'm so sorry you are having the same horrible symptoms,the ones I mentioned are so commonplace in Scleroderma,and a lot of them so difficult to treat!But one thing I do know is that between us all we have tried, or will try something that may help, and share it! When I initially was rushed in the hospital, all the doctors were very negatie and full of doom and gloom,and a transplant within 5 years was the prognosis. And that was about 8 years ago! Not only th
  13. Dearest Sweet Pamela! From one 'crazy person' to another, I think you are fabulous! If it takes a little crazy to survive this journey then I say we embrace it! Much love and light to you, Alex xxxxx
  14. Hello! Welcome! Luckily before I became ill I was a Beauty Therapist so still manage to do my own nails. You do have to be incredibly gentle or find a very experienced understanding therapist. One way of very gently getting rid of the dead skin is to apply some nourishing oil or cream to the cuticles and then soak one hand in a bowl of warm water. After about 5 minutes take the hand out and with a soft fluffy face cloth or towel, gently rub and slough off the dead skin around the nail, and if you can mange, gently push the cuticle back and off the nail plate as if left, the cuticle
  15. Dearest Amanda,Janey and Sweet, Thank you lovely ladies for your kind replies! It feels so good to share and be supported by you. It's a kind of love and support that comes from experience I know. I am so grateful for it, I had forgotten how lovely it is to find your messages here! Thank you thank you. Janey I might come and sit on your lap with your cats! It sounds heavenly. Now if I could only stop ordering sparkly jewelery of the TV! All my love to you on this Friday night. Alex xxxxxxxxx
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