Debs B: Diffuse Systemic Sclerosis, Type 1 Diabetes, Autoimmune Hepatitis, Lupus, Raynauds, Thyroid, etc.
I never seem to be free of pain or fatigue, if its not one cause, its another.
I am forty-seven as I write this, and I live in a remote village in southeast England. Although I feel very alone with my diagnosis, I had already heard of scleroderma, as my cousin has it, although she has a different variant to mine.
When my rheumatologist said my blood test had confirmed I had systemic scleroderma I just thought, "Not another one to add to the list.” I had been living with Type 1 Diabetes since I was four, Hashimoto's Thyroiditis, then later systemic lupus erythematosus (SLE) and mixed connective tissue disease (MCTD), as well as sarcoidosis in my spleen and autoimmune hepatitis.
I was diagnosed with sarcoidosis in 1996, when my spleen had enlarged to eight times its normal size and I was in hospital for three weeks. I had the first of two bone marrow biopsies (ouch!) which showed up something wrong with my bone marrow. The oncologist said they would keep an eye on it in the future. The autoimmune hepatitis was later diagnosed in 2002, by a liver biopsy (more ouch!). I am constantly anemic but no real cause has been found yet.
Since my diffuse scleroderma diagnosis in December 2007, it has enabled me to make sense of some of the other problems that had been mounting up for a few years. I have Raynaud's which makes me go cold right through to my insides, many joint pains, stiff limbs in the mornings, cysts on my hip joints, sore soles of my feet, a very slow digestion, dry eyes and mouth, and I also get very short of breath and my heart pounds as if I had run a marathon. It doesn't seem that long ago when I was able to run up two flights of stairs with no trouble, but now I would be on the floor in no time!
I have just had my baseline echocardiogram and a CT of my lungs which shows the beginnings of fibrosis. It seems to be a rapid progression, but the new tablets of mycofenolate mofetil and hydroxychloroquine have made me feel better than I have in a long time.
I also have stage 3 kidney failure, possibly due to balancing my blood sugars for forty three years on insulin, even though I have always maintained good control. I get large and painful ovarian cysts, have had two breast lumps removed, glaucoma, cluster headaches and increasing neuropathy which strikes all over my body. Every day is different as there are so many things that can flare up at any time. I never seem to be free of pain or fatigue, if its not one cause, its another. I make the most of the good days when they come along.
This seems to be a long list of ailments that I have been coping with for years, so the addition of diffuse systemic sclerosis did not really panic me. I just have to get on and live my life, and if all these conditions want to come along for the ride – well, I must have been sent these challenges for a reason, so I'd better get on with it!
Some friends say, "Aren't you unlucky to have so much wrong with you?” but my answer is always, “I'm lucky, things could be much worse." However, I do worry what the future holds for me as the diseases progress.
I had to be medically retired from a job I loved due to the mounting problems associated with pain in so many places, fatigue and reduction of hand dexterity (I could hardly hold a pen to write, or turn a door knob). When I attended for my occupational health assessment for the retirement, the physician looked up as I entered the room and said, "I was expecting you to be in a wheelchair from reading your list of conditions!” I have always been a very positive person, and still look very well on the outside!
I was born without toes due to the drug Thalidomide that was prescribed to my mum during her pregnancy with me. This gives me problems with walking and balance, and buying shoes is a nightmare. I always thought I was so lucky that I hadn't lost my fingers as well. I was told that I was ‘one in a million', and although my combination of autoimmune conditions has increased over the years, I am still mobile; I have a cyst on my spinal cord, so don't take my mobility for granted. I have no skin involvement, I can tend my garden, visit my daughter and grandchildren in Scotland, and I have friends and a lovely family to keep me going. I care for two separate elderly relatives, one who is going blind, and one with bad arthritis, so I am always busy and do not have much time to worry about myself. I think a positive attitude has kept me going, even though I have to dig deep for it some days!
Good luck to everyone seeking answers to this complicated disease.
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!
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.