My Scleroderma Story (grab a cuppa!)
Posted 05 August 2009 - 03:24 PM
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!
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.
Posted 06 August 2009 - 12:00 PM
Thank you for sharing your story with us it is as unique as you are. It's always good to know that you can still live a good life and a long one at that despite scleroderma.
Take care and keep going!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 06 August 2009 - 05:36 PM
Your story is quite compelling. I, too have systemic scleroderma. Diagnosed in 2006 with skin scores of 35, March 2009 skin scores of 11. I believe the worst is over for me. I am a retired school principal, and now work in psychiatry.
Grandparents from Hebrides and Ireland. It seems that people from the British Isles or whose ancestry is from that region suffer disproportionally from autoimmune diseases.
One step I took to feel better was to start antidepressants and they have helped me greatly.
Anyway, your courage and spirit are inspiring.
Posted 10 August 2009 - 06:23 AM
I'm new to this forum, but not new to pain. I have all the symptoms that you do, including the Intestitial lung disease. I was only diagnosed with Scleroderma about a month ago. For five years I was misdiagnosed with RA (rheumatoid arthritis) and therefore for 5 years I was getting the wrong medication! I'm now getting ready to have myThyroid out on Friday(I have a muti nodular goiter). Anyhow, I can sympathize with you as I've had many surgeries and am being considered for a lung transplant. I am not on the list yet, pending more tests, but hopefully soon will be. Is transplant an option for you?
Posted 10 August 2009 - 12:27 PM
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