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My Scleroderma Story (grab a cuppa!)

9 posts in this topic

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.



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Oh Alex,

Here is sit with my cuppa (Been to New Zealand twice this winter so new what you were talking about) Reading your story and the lovely way you told it.


You truly are a beautiful person inside and out. I'm sorry for the difficulties, and some very severe at that, that you've been through. I can relate to so many of your feelings, like getting sick to death of hearing my OWN voice when I have to talk about my health. I have a few very supportive friends, and some well meaners, and like you, I can look like the picture of health because I care about how I look. So, every time I'm asked "Oh how are you feeling today" so I don't have to go through the list of all my ailments, I just say "Oh nothing out of the ordinary", unless there is something pressing going on. It saves me the time and emotions of going through the long list of every single thing I deal with daily. With a couple of very close friends, they do get the nitty gritty details, but even with them, I try to talk about other things than my health. Although, have to say sometimes that is very hard when that is my main focus of my life. I try hard to focus on other things as well, but you know, the health stuff is right in your face all day!


I liked your meditation idea. I've tried that off and on and I need to make it a daily practice. I'm also journaling which helps quite a bit. I just worry that one day someone will find it, read it and think, "Oh wow, I never knew she was such a crazy person!" :)


Anyway, welcome back, I've missed your beautiful self.

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks for sharing your story! Girl - you've been through the mill, I must say. However, it does seem that you have found several ways to distract yourself and stay focused and calm. That is SO important. We all need to find ways to make time for ourselves and to slow down our minds. With this disease we can get saturated by all the negative aspects, and fail to see the positive aspects of our lives that still exist. So I think I will do just that - I have a garden that needs some water and a couple of furry cats that need a lap. :)


Big Hugs to you Darlin',

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Alexandra


I initially replied to your post on the UK sub forum! Janey is so right! There's still good life to be had after scleroderma it's just that life is not what we expected but that's not necessariy a bad thing! You go girl!


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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.




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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,




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Thank you very much for sharing your story. I have yet to put mine in print, but after reading yours and a few others recently I think I will start.


I am all too familiar with the trouble of addressing my pains as they are so much a part of my daily life. I think many of us find ourselves saying "we're fine" when "fine" to us really means the same pains and discomforts exist, but no new issues. After hearing "but you look good" and "well you don't look sick" so many times I just keep most of my true thoughts to myself. Family and friends can mean well, but even they get caught up in the "how can I fix it when I can't see it" syndrome. There are only a couple of people in my inner circle who can truly detect how I'm really feeling at all times so I am honest with them.


Sweet, I bought a journal 2 years ago and haven't written the first thing in it. I am going to try to remember where I put it and use it!


Having sclero and AI friends to share with is most helpful though and has gotten me through many a days.


Peace and blessings!

I may have Scleroderma, but Scleroderma doesn't have me!

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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



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