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Alexandra: Scleroderma

I am sometimes bored of my own voice saying this hurts and that hurts.

White Cat with Green Eyes by Shelley EnszOkay, well it's 2 AM 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 am here if anyone wants to talk to me about any issue that I may have raised.

I am a forty-two-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 twenty-one, I was eventually diagnosed with dermatomyositis after many months of doctor visits. I was in hospital for seven weeks on 80mg prednisone 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 two 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 nine 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 (telangiectasia). 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 was about nine 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'. I have areas of skin involvement. My fingers are tight and swollen but not bent. I have a small mouth, Raynaud's, hiatal hernia and a few other bits here and there.

Nearly three years ago, I had a brain hemorrhage 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!

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 is probably not visible to strangers.

Twenty 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. I do feel quite lonely a lot of the time.

How long is this story?!

Anyway, there is so much more that has happened and is still happening (chemotherapy for lungs and subsequent early menopause so no children, 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 aroma therapist and everyday for the last twenty 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 is 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 I try to stop saying yes to people or tasks that I know are beyond my 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 certainly 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.

To Contact the Author

Email: [email protected]
Story edited 08-12-09 JTD
Story posted 09-22-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Dermatomyositis Stories
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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