Alexandra

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About Alexandra

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    Surrey UK
  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 home without it last week. Thank you Amanda for the reassurance that although scary, a lot is still possible! I prescribe chocolate, comedy programmes, lots of rest and cuddles (my cat is very accomodating.) I wish you all some peaceful times and energy and laughter! Alexandra (in Surrey)
  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 love to you all Alex xx
  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 love to you all Alex xx
  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 very tight and thick,I can even hear my wrist tendons creaking when they are really inflamed and boy it does hurt!Though hopefully the ultrasound will be able to see exactly what is happening. If after the ultrasound it does turn out to be tendon related then sometimes a gentle warm compress or hot water bottle can start to ease the tightness, and allow the circulation to gentle heat your poor old joints! Healing thoughts coming your way! Alexandra
  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 not sure. Has anyone travelled lately?Did you take precautions? take care Alex xx
  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 not sure. Has anyone travelled lately?Did you take precautions? take care Alex xx
  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 days before,Oh how disgusting,I'm so sorry anyone who is eating whilst reading! It has been my experience that even if the acid is controlled with the wonderful PPIs,reflux can still happen.I often have a mouthful of liquid that doesn't always burn,but when it does..as you all have experienced, there is nothing quite so awful. Generally though with very boring bland diet and not eating past a certain hour etc and medicines then the burning can be eased. But I don't know about you lovely people out there,but my pleasures in life are now very few,and tasty bits of food,or sweet things are often the highlight of the day.But oh the suffering afterwards. My relationship with food has become very hard indeed. Chocolate of course is not a real food and as it melts in my mouth doesn't get stuck in my throat! To everyone who is having trouble with reflux,burning,pain and all gut involvement, I am thinking of you and sending you love and understanding. Take Care Alex xxxxxx
  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 Alex xxxxxxx
  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 that, I have maintained my 32% diffusion capacity for the last 4 years.I have locally a pulmonary rehabilitation centre and after my course there have continued with the exercises and advice from them. Here in the UK we are given a list of supplements that help 'mop up' the waste matter from fibrosis,and I have been sticking to that too. Low diffusion capacity and function is most definitely disabling,but for me,if I manage it carefully and am strict with myself with gentle exercise then it does keep it manageable.One of the things that upsets me most is the lack of freedom, having to check if my friends have colds or coughs(as you well know an infection can go on for months!)I would love to socialise more.But hey I get to stay in a cuddle my delicious cat! I hope today has been a good day for you..and if not...I'm here if you need to talk! Much love and light to you Alex xxxxx
  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 gets attached to the nail ,and as it grows the skin gets stretched and splits which is very sore and those splits are called 'hangnails'! The warmth and wetness loosens dead skin and it comes away easier. Follow the removal of dead skin with some more nourishing cream to keep soft! It is best really not to use any metal or sharp instruments as our skin is so often fragile and healing more difficult. It is always best to try and use creams that are natural (no chemicals, perfumes or irritants). Better still get a friend to do all of the above whilst you put your feet up! Phew that was a manicure lecture..I feel like a bossy teacher ;) Suddenly I'm off to soak my nails. Much love, Alex xxxx
  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