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Sue D: Diffuse Scleroderma

My hands became red and burning and very sensitive to hot and cold and especially very tender if knocked making even the smallest of jobs an ordeal and approached with caution.

My first symptom showed up on Christmas 2005. I woke with swollen hands. I thought it would go away, so I did not take a lot of notice. It did not go away, but only got worse. Pain developed in my hands, then I noticed pain in my knees, then my shoulders, down my back, elbows, hips, feet…just everywhere! Movement became harder.

At this time I was holding down two jobs just to get a full week. I was a personal assistant for a real estate firm and a seasonal worker out in the vineyards just until my hours increased in my office job. Working out in the vineyards became harder and I noticed the pain in my hands more so and generally all over making movement more difficult. Thankfully harvest was over and there was no more work out there for three months. My hands became red and burning and very sensitive to hot and cold and especially very tender if knocked, making even the smallest of jobs an ordeal and approached with caution. My body became puffy and swollen all over, and at this stage my lips were the fullest they have ever been, making the collagen increase in my system, vainly, a welcome addition, for which I now feel ashamed.

I went to see my general practitioner; she suspected lupus and sent a letter to a specialist for a second opinion. This letter along with two more after that, got lost. Needless to say I was becoming frustrated waiting, knowing something was terribly wrong, I just needed to know what.

My husband and I decided to travel to Christchurch to see a rheumatologist who, within one hour, knew exactly what it was and admitted me overnight into hospital for a series of tests, all to prove what he knew: Diffuse Scleroderma ! This occurred in August 2006, eight months after the first signs of the disease. I was given some medication for the pain and sent on my way.

I was referred to a rheumatologist in Nelson, much closer, as there are none where I live, my general practitioner keeps her hand on the pulse and deals with prescriptions and referrals, and I have had a wonderful physician here in town dealing with the harder issues.

I have definitely had nothing at all to complain about as far as our health system and feel very blessed to live in this time; any other time, I know I would be dead! After this, I became extremely anemic, lacking energy, losing weight, constantly queasy, my heart beat so loudly it kept me awake at night. Blood tests were done showing my hemoglobin had fallen to 66, and gastroscopy's were done showing I have gastric anterior vascular ecstasia (GAVE), in short, Watermelon Stomach. This is where tiny blood vessels are at the surface of the stomach in lines that look like the outside skin of a watermelon, these vessels drip constantly making the stomach queasy and stools black. So the decision had to be made to have a blood transfusion. In the beginning I was needing transfusions bi-monthly, by the September 2007; they were as frequent as ten days apart.

I had to travel to Wellington by plane to have laser treatment for the GAVE, six treatments in all. My last transfusion was October 2007 (so far I think I have had over twenty) and the last laser treatment was November 2007. So I enjoyed an energy filled Christmas and holiday period, four months in all.

It is now January 2008, and today I had another transfusion. My stomach has been bleeding again, I am gutted. This also means another trip to Wellington for more treatment. The last time left me really ill, cramping and vomiting for a week, so I am not looking forward to that again. No one seems to know the course GAVE takes and how long the treatments last, whether it is short term or just simply ongoing until this disease either lifts or kills me.

I have tests in Nelson when I go see my rheumatologist for the heart and lungs, and so far, so good. My skin has hardened on my hands, up the arms, on my neck, chest and trunk and on the insides of my thighs. These areas are so incredibly itchy, requiring my husband to massage creams and oils each night.

In winter 2006, my fingers developed ulcers for the first time. They healed over the summer period only to return last winter. They were much worse this time and became extremely infected. This was a pain like no other, that had me in tears and popping painkillers constantly until I was put onto the right nurses, who dressed them properly and put me on a seven day course of intravenous antibiotics. The worst ones have healed, but still, in the middle of summer, one is stubbornly refusing to fully heal. I wear pressure bandages on my hands; these were given to me during a short stint with a physical therapist for the swelling. I no longer have swelling, but I wear them now to hide my hands. They are ugly, clawed, discolored with patches where the pigment has changed, they looked fake and I get embarrassed to show them.

In June 2007, I was put on a five day, eight hours per day course of a drug given intravenously to open the blood vessels all over the body. This was supposed to warm the body up and get it ready to cope with the winter. I did not notice a major difference, but in hindsight, I did not get anymore flares, especially in the hands, where they used to go white when cold or when I am stressed, so I can say it was worth it. I am booked to have the same again this autumn and every year if it helps.

Also in April 2007, I had a central line put into the left side of my chest, just above the breast. This has been a godsend, as trying to access veins in the arms became near impossible and very painful, now I cannot even see any. My arms have become so stiff and the skin hard, the elbows are contracting and I can no longer straighten them properly and they always feel cold even in summer. Both my arms and inner thighs now have small, tender ulcers dotted over them, they do not seem to open up but just sit as a scab, then fall off.

I had to give up working altogether in December 2006 during the worst part of the anemia. Thankfully we took out an Income Protection policy two years prior to my illness which covers whatever wages I would be getting if I could still work. My days are hard to fill, with such limited movement in my body and constant pain. I have days where I am so frustrated and want to cry all the time and days that are full of anger, days where I hardly even notice I am ill, and days that are fearful, not knowing how long this is going to go on and where it will end.

I have an incredibly loyal, wonderful husband, who is so giving, even when I know he finds it really hard at times and three amazing children, ages seventeen, fifteen and twelve, who help out as much as they can, for which I am blessed an grateful for and I don't say so nearly as much as I should.

I know you all know how it feels and that we suffer this affliction together despite our different circumstances. The most important thing is that we can be honest enough to share and talk about it. That is where our freedom lies. Thank you for this opportunity to do just that!

To Contact the Author

ISN Story Editor: Judith Thompson Devlin

Judith 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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