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Jill: CREST Scleroderma and Sjögren's

In Loving Memory of Jill Carpenter

I was bullied at school because, kids being kids, they assumed I did not wash properly as I was a dingy color.

My name is Jill. I will be fifty in a few days time. I have actually had severe Raynaud's since early childhood. The doctors told my mother, in those days, that it looked like Raynaud's but it could not be, as children did not get that, so it was probably a sign of good health!

I can assure you I suffered dismally but learned to accept my lot. I was bullied at school because, kids being kids, they assumed I did not wash properly as I was a dingy color. I used to hide during physical education class in the loo (restroom). I just used to sit it out in the loo until I could sneak back in when the lesson was over.

By the age of 14 I had leg ulcers and was in the hospital for some time, for tests. They said it was just the body's reaction to puberty and I would grow out of it. I learned to skip school and became something of a rebel.

All sorts of things went on and, to put no finer point on things, in the days of "peace and love" and all that, I found my own "cure". Very risky and totally illegal, but believe me, I felt better than I had for years.

I grew out of the rebellion stage and got out of all that. I started to feel once again exhausted, tired and depressed. I went back to being bluer than ever all over, not just my hands and feet. I felt by now it was my own fault so I put up with it. I had trouble coping with working on some days. I would need to take time off, as I was just too tired to put one foot in front of the other. I did temporary work instead as the money was very good and you could choose the hours within reason.

I went back to the doctor and he decided I was depressed. I was given electroconvulsive therapy (ECT) and tranquilizers in vast quantities. (I learned in later years that this was an experimental approach that was finally abandoned—thank goodness!) I was told to clear my mind. It left me with another legacy, which believe me, is hard to handle and I have only learned now that that is why. Someone has finally done some follow up research and found that it caused the same things in others too. Anyway I digress.

Eventually in 1977, I had an accident and fractured my pelvis. I was taken to the hospital. When I was x-rayed they picked up some calcium deposits in various places. I saw a renal specialist who thought my color might be Brights disease, but then he referred me to a cardiovascular doctor who referred me to a "friend" who had an interest in Raynaud's. Too much detail to fill in completely, but the upshot was that I was actually in danger of losing my lower left leg and toes. The right foot and all my fingers were infected and ulcerated. I would learned to live with it as, after all, it was just depression!

I was rushed to see a professor in a London hospital who immediately performed abilateral sympathectomy. There I was cured. I was sent home with pneumonia two months later, to get better. I did not get any better, so I went back to the hospital to be treated for the pneumonia and also had a bilateral cervical sympathectomy. This time I was a lot better and basking in the feeling that at last I could start living. The pains and things I was left with were a small worry now. I could even cope with the exhaustion, after all, that would go!

My left hand was still in a bad way after a few months so they had me back in the hospital and redid the sympathectomy on that side. The operation did not go as well as hoped and I ended up with pleural pneumonia. I got over it eventually and had a long period of recuperation.

About six months later I suffered from peripheral neuropathy. I was left paralyzed in the extremities. I was in the hospital for some time, but in the end they decided it was hysterical paralysis as I had a history of depression. Isn't hindsight a wonderful thing? Peripheral neuropathy is now recognized as part of scleroderma.

Eventually after a long haul I was mobile again although still feeling unwell. I learned once again to live with it. I learned to adapt to my own way of getting by.

In 1980 I had to have a medical exam for something. I noted my records said I had Raynaud's, but what was scleroderma ? I would never heard of it. I assumed this must be part of the Raynaud's so I never asked. Once again I just got on with it. By this time I was virtually doctor phobic and said to myself whatever I had was all in the mind so my own fault and even if it wasn't, they'd said it was.

I steered clear of all doctors for many years. I went to see my dentist because I was suffering badly with mouth problems. She was horrified and sent me to the dental school at Guys Hospital in London. They realized I had no saliva and then looked for tears. None there either. I was referred and Sjögren's was diagnosed. Still no link was made to the Raynaud's. I ended up losing all my teeth.

I continued on over the next few years, once again getting on with it. I had the most appalling obstetric history with several complicated pregnancies and deliveries and many miscarriages. The obstetrician wanted me to see a rheumatologist but by this time I was just so confused as to what was wrong with me I declined, and discharged myself. I gave up trying to have babies! That way I did not have to go to the hospital.

In 1988, I was rushed to the hospital for an emergency hysterectomy as I was hemorrhaging. Once again they asked me to see a rheumatologist. This time I agreed. He was lovely and sat me down and explained what scleroderma was. He was certain that I had CREST.

Then came the bombshell. I sat waiting for him to say he'd make it all go away so I could start living. He wanted me in for tests. At this point I panicked. I could not face being in or visiting a hospital so I discharged myself from his care. I decided that I have lived with it this long so will simply get on with it again!

Since then I have had general practitioner care only. Mind you, she's well informed and knowledgeable and acts as a sort of intermediary between me and the hospital.

That is my history of diagnoses as such. I am a bit exhausted with writing all this now so will close. Maybe I can fill in from here another day. I hope you're not too done in from reading all this.

In Loving Memory of Jill Carpenter

In loving memory of Jill Carpenter, Gene and Shelley Ensz have made a comprehensive donation for research, support, education and awareness for scleroderma and related illnesses. Jill was a retired ISN volunteer from the U.K., who served as an ISN Support Specialist and as an ISN Assistant News Guide. She suffered from scleroderma and myasthenia gravis, and passed away from lymphoma on Saturday, September 23, 2006, in Queen Elizabeth Hospital. (Also see In Loving Memory Donors).

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ISN Story Editor: Sherry Jo Young

Sherry Jo Young was the ISN Story Editor for this story.

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

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