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Alexandra

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Everything posted by Alexandra

  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
  16. OK well it's 2am and the land of blissful sleep escapes me,so I thought I would give you all a hopefully concise history of my health. Mainly to let you all know you are not alone but also to say I'm here if anyone wants to talk to me about any issue that I may have raised. I am a 42 year old woman, and live on my own with my very handsome cat Jessie. I have a mother and father, divorced and both remarried, and a younger brother and older sister. My sister has Systemic Lupus and my Father's sister has Scleroderma. Mum has Arthritis. So I'm thinking the odds were stacked against me, but I
  17. OK well it's 2am and the land of blissful sleep escapes me,so I thought I would give you all a hopefully concise history of my health. Mainly to let you all know you are not alone but also to say I'm here if anyone wants to talk to me about any issue that I may have raised. I am a 42 year old woman, and live on my own with my very handsome cat Jessie. I have a mother and father, divorced and both remarried, and a younger brother and older sister. My sister has Systemic Lupus and my Father's sister has Scleroderma. Mum has Arthritis. So I'm thinking the odds were stacked against me, but I
  18. Hi Lizzie, Amanda and Sweet! Thank you for your welcomes! Amanda yes it was me who emailed you, I am on a bit of a mission to start some supportive group hopefully close to me in Surrey. I shall post a new topic to relay my scleroderma history and the latest surgery etc..I 'm sure it may help someone with ideas etc! Happy Sunday to you my friends. Love Alex xxxx
  19. Dearest Barefut I just can't bear the thought of such added torment on top of the daily or even hourly struggle of ill health! Much as everyone else who has replied I too have had my share of money challenges.Amanda, I have recently had to reapply for my incapacity benefit,the sheer size of the form set my fingers into painful swollen sausages after filling it in! I remember having to do a physical assessment and without even looking up from her desk the rather horrid lady doctor made me stand in my underwear in a cold room,and asked me how far I could carry 2 bags of pototoes!I said I can'
  20. Hello all! This is Alex in Surrey in the UK! I am back from a sort of surgery/flare up/painful period of about a year. It's a long story and I won't bore you with it (well not yet anyway!). My return is of course to hopefully find some peace, comfort, joy and understanding that is sadly so often missing out there in the 'real' world, when one is struggling with Scleroderma. I see we now have a UK forum section too,which is great ,though I'm not sure if this post will be going to only the UK or my friends in the rest of the world too? Any way, it is 5 am and my elbows ar
  21. Hello you All I can say to you is I really do understand.I'm sure each one of us feels or has felt that indescribable exhaustion. It's not normally about sleep or lack of it.Sometimes I feel it is like my inner flame is literally just a small flicker and that a gentle breeze might extinguish it. Inside you is a strong beautiful,brave and spirited woman.And soon you will feel that energy and spirit. Rest well dear friend,and know that you are a perfect human being just as you are.You have coped for so long with this disease,so a pat on the back is due rather than guilt for not cleaning! Ch
  22. Hi everyone This is a very usefull discussion! Here in the UK at the Sceroderma unit at the Royal Free in London,I was actually given a list of supplements to be prescribed and taken continuously as they had been clinically proven to be beneficial!One of the absolute must takes they insist on is the fish oils,ideally 10g a day!Which is a huge amount.But I now get it from my general practitioner on prescription.I notice a huge difference in my skin and joints when I keep up the dose.Apparently it also helps to remove some of the free radicals and by products of sclerosis that we have floating
  23. Dearest Whirlway I am thinking of you and your darling sister.I hope you manage to get a little rest too.I shall keep you both in my thoughts . Alexandra
  24. Rest well and welcome home! I'm with the other shivering ladies,mind you here in Surrey today we have...wait for it .......a sunny day!!Whoopey! I hope your rash is feeling a bit better. much love Alexandra
  25. I feel a bit tearful!Thank you so much for the compliments, my heart is feeling full.I know it's a bit vain,but sometimes it does help my self esteem to feel attractive.Now from the neck down is another matter entirely!! ;) much love and light Alexandra
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