Alexandra

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Posts 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 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!post-571-12530460335418_thumb.jpg

     

    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!post-571-12526151408451_thumb.jpg

     

    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. 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


  14. 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


  15. 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 only found out the Aunty bit last year.

     

    In 1989 when I was 21 I was eventually diagnosed with dermatomyositis after many months of doctor visits. I was in hospital for 7 weeks on 80mg Prednisolone as my muscle inflammation was so bad (CK 7000). And so the troubles began. Looking back I had swallowing problems and blue fingers even then.

     

    On Azathioprine and Steroids I clawed myself back to some normality over the next 2 years. Then my joints began to suffer. Both wrists and my neck had bone crumbling and floating around. I have since had a fusion of my neck (C1 and C2) and both wrists have had a total of 9 surgeries and are now fused and have had tendon repairs, etc. They are hanging on in there but as an Artist I am now very challenged when I want to paint!

     

    Anyway ..onwards!

     

    About the same time as neck surgery my Scleroderma symptoms arrived in great style: Reflux,itchy swollen skin,joint and muscle pain and tiredness. Plus hundreds of little red spots (telangectasia)! My mouth was tight and getting smaller too.

     

    As is often the case I diagnosed myself with Scleroderma at which point my rheumatologist sent me for tests (finally). Skin plugs were taken, muscle biopsies and eventually I ended up at the Royal Free in London. This is about 9 years ago. All this had taken just too long and by the time I got there my lungs were in bad shape. To date in the scleroderma arena I have pulmonary fibrosis which is quite severe, chronic reflux and constriction of the 'food tube', areas of skin involvement, fingers are tight and swollen but not bent, small mouth, Raynaud's, hiatus hernia and a few other bits here and there.

     

    Nearly 3 years ago I had a brain Haemorrhage during a routine dental procedure. Strange blood vessels and a reaction to the adrenaline in a local injection seemed to be the opinion of the doctors. I recovered surprisingly well!

    And a year ago I had quite drastic surgery to my mouth and cheeks to improve my mouth opening (for the dentist etc.) and to reduce the pulling back of the lips and cheeks. It was completely dreadful, and I suffered such pain and nerve problems. I still have pain and numbness but in the last month or so I can finally see that it was worth it. My lips are meeting well and I have a perfectly normal size mouth opening. There is still tightness but I think only I can feel it and it's probably not visible to strangers.

     

    20 years is a very long time to have pain every day, and the sheer length of time means relationships have come and gone. My family are brilliant in an emergency but in the day to day things they have got on with their own lives, as have my darling friends. We can't keep having the same conversations about how things are a bit of a struggle for me. I am sometimes bored of my own voice saying this hurts and that hurts. Also life threatening illness is sometimes impossible for loved ones to face.

     

    My experience with men and ill health hasn't been great. Partly because I am a make up artist as well as an artist and I can make myself look very healthy and normal, but then of course the reality is not so much fun. My ex husband abandoned ship into the arms of a healthier young thing only 18 months after we married ( 15 years ago now so water under the bridge). I have a boyfriend at the moment who is very caring. He too has lung problems. I'm not sure if 2 ill people can work, if he has a chesty infection we can't see each other and vice versa. Also I selfishly thought that around this time of life I might be able to be pampered and spoilt, and not have to look after someone else. Hmmm. I do feel quite lonely a lot of the time.

     

    How long is this story!!

     

    Any way there is so much more that has happened and is still happening (chemotherapy for lungs and subsequent early menopause so no children, etc. etc!) but for now I shall sign off.

     

    If I may just say a couple of things that have saved my life and changed so much about this disease for me:

     

    I am a trained aromatherapist and everyday for the last 20 years I have massaged (or got someone to massage me) with gentle pure oils.The result is that my skin has stayed on the whole soft and nourished. If only I could massage my lungs!

     

    Secondly my feel good meditation, healing music. Just a little everyday, looking inside and finding any irritation/anger or fear and gently letting it go .Easier said than done I know.

     

    Thirdly stop saying yes to people or tasks that you know are beyond your energy levels or physical abilities. I am still having trouble with this after all these years!

     

    Lastly ... a loving cat. Genuinely he has saved my life. That noisy heavy big bear of a cat sitting on my chest in the morning making breathing even more difficult than it already is...gets me up in the morning. Well he is very hungry by the time I wake up!

     

    Time for bed my friends..I send you love and warmth.

    Alex

    xxxxxxxx


  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 only found out the Aunty bit last year.

     

    In 1989 when I was 21 I was eventually diagnosed with dermatomyositis after many months of doctor visits. I was in hospital for 7 weeks on 80mg Prednisolone as my muscle inflammation was so bad (CK 7000). And so the troubles began. Looking back I had swallowing problems and blue fingers even then.

     

    On Azathioprine and Steroids I clawed myself back to some normality over the next 2 years. Then my joints began to suffer. Both wrists and my neck had bone crumbling and floating around. I have since had a fusion of my neck (C1 and C2) and both wrists have had a total of 9 surgeries and are now fused and have had tendon repairs, etc. They are hanging on in there but as an Artist I am now very challenged when I want to paint!

     

    Anyway ..onwards!

     

    About the same time as neck surgery my Scleroderma symptoms arrived in great style: Reflux,itchy swollen skin,joint and muscle pain and tiredness. Plus hundreds of little red spots (telangectasia)! My mouth was tight and getting smaller too.

     

    As is often the case I diagnosed myself with Scleroderma at which point my rheumatologist sent me for tests (finally). Skin plugs were taken, muscle biopsies and eventually I ended up at the Royal Free in London. This is about 9 years ago. All this had taken just too long and by the time I got there my lungs were in bad shape. To date in the scleroderma arena I have pulmonary fibrosis which is quite severe, chronic reflux and constriction of the 'food tube', areas of skin involvement, fingers are tight and swollen but not bent, small mouth, Raynaud's, hiatus hernia and a few other bits here and there.

     

    Nearly 3 years ago I had a brain Haemorrhage during a routine dental procedure. Strange blood vessels and a reaction to the adrenaline in a local injection seemed to be the opinion of the doctors. I recovered surprisingly well!

    And a year ago I had quite drastic surgery to my mouth and cheeks to improve my mouth opening (for the dentist etc.) and to reduce the pulling back of the lips and cheeks. It was completely dreadful, and I suffered such pain and nerve problems. I still have pain and numbness but in the last month or so I can finally see that it was worth it. My lips are meeting well and I have a perfectly normal size mouth opening. There is still tightness but I think only I can feel it and it's probably not visible to strangers.

     

    20 years is a very long time to have pain every day, and the sheer length of time means relationships have come and gone. My family are brilliant in an emergency but in the day to day things they have got on with their own lives, as have my darling friends. We can't keep having the same conversations about how things are a bit of a struggle for me. I am sometimes bored of my own voice saying this hurts and that hurts. Also life threatening illness is sometimes impossible for loved ones to face.

     

    My experience with men and ill health hasn't been great. Partly because I am a make up artist as well as an artist and I can make myself look very healthy and normal, but then of course the reality is not so much fun. My ex husband abandoned ship into the arms of a healthier young thing only 18 months after we married ( 15 years ago now so water under the bridge). I have a boyfriend at the moment who is very caring. He too has lung problems. I'm not sure if 2 ill people can work, if he has a chesty infection we can't see each other and vice versa. Also I selfishly thought that around this time of life I might be able to be pampered and spoilt, and not have to look after someone else. Hmmm. I do feel quite lonely a lot of the time.

     

    How long is this story!!

     

    Any way there is so much more that has happened and is still happening (chemotherapy for lungs and subsequent early menopause so no children, etc. etc!) but for now I shall sign off.

     

    If I may just say a couple of things that have saved my life and changed so much about this disease for me:

     

    I am a trained aromatherapist and everyday for the last 20 years I have massaged (or got someone to massage me) with gentle pure oils.The result is that my skin has stayed on the whole soft and nourished. If only I could massage my lungs!

     

    Secondly my feel good meditation, healing music. Just a little everyday, looking inside and finding any irritation/anger or fear and gently letting it go .Easier said than done I know.

     

    Thirdly stop saying yes to people or tasks that you know are beyond your energy levels or physical abilities. I am still having trouble with this after all these years!

     

    Lastly ... a loving cat. Genuinely he has saved my life. That noisy heavy big bear of a cat sitting on my chest in the morning making breathing even more difficult than it already is...gets me up in the morning. Well he is very hungry by the time I wake up!

     

    Time for bed my friends..I send you love and warmth.

    Alex

    xxxxxxxx


  17. 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


  18. 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't carry potatoes,she said in a very sarcastic voice 'not even one bag?'

    Eventually I walked to her desk and put my hands under her nose,they were by now dark blue and of course stiff,swollen and very scarred from surgery to implant metal plates.

    She went a very slight shade of pink but still wouldn't look me in the eye.

    I got my benefits.

    It feels like an insult to be questioned in this way but on the way in I followed a rather jolly girl bouncing down the street,as she turned into the benefits centre she put on a pair of shades and started limping, I was absolutely horrified!

    Anyway dearest Barefut,I send you love and an enormous hug!In our next life we shall all be millionaires!

    Alex

    xxx


  19. 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 are sore on the table so I'm off to put the kettle on and cuddle the cat.

     

    My love and gentle hugs to everyone.

     

    Alex

    xxxx


  20. 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!

    Chocolate helps too ;)

    much love to every single person who is reading this.We are all doing so well!

    Alexandra (uk)


  21. 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 around after inflammation!Also Vitamin E is very good for us.

    Phew I need to rest my brain after that!

    love to you all

    Alexandra

    x


  22. 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


  23. 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