I love novels; I fall in love with characters and never want good stories to end. I create stories with in my work with paper, fabric, fibers and beads, with ephemera, vintage lace, found objects and books and create 4x6 mailable art, fabric journals and altered books with narrative foundations (www.studionotesandmusings.blogspot.com).
(Left, collage, 4x6 mailable art originally uploaded by Pat Spiller 2005.
True Stories. I have been reading stories about real people living with chronic lymphocytic leukemia (CLL). When I was diagnosed with CLL in 2006, I started surfing the web with a hunger for information about adult-onset leukemia. That was when I discovered the CLL Forum. It was just under a year old and started by people who are living with CLL. There are well over 1000 members scattered around the globe, a brave and hearty community of people generous with their wisdom and support and open and candid with their personal stories.
But lately, I started scouting out information about Behcet's Disease. There doesn't seem to be a lot of first person narratives on the web perhaps due to the fact that so few Americans have this disease but I did find a story written by a woman who tells of a 17-year search for a diagnosis. Her story is more common than you might imagine. And, it echoes my own.
My story is continually evolving since my diagnosis is new but I share a 20-year frustration with that woman of going from doctor to doctor to yet a another specialist and coming up empty handed. For me, the mouth sores came first. They apeared suddenly and painfully, lasted about 3 weeks, disappeared only to make another appearance again the next month. I was around 40 and menopause was suggested as a catalyst. Alergies to food, another. Every doctor I saw had a different theory, a new treatment. Every treatment worked.....for a little while. They were refractory to every treatment; they still are.
(Left, original art uploaded by Pat Spiller from an altered book entitled, "Singing With A Full Voice", 2006).
Then came gastrointestinal issues and more docs and no answers. No doc linked the two symptoms even tho' 97% of all people with Behcet's Disease suffer from mouth ulcers and quite a high percent deal with GI issues. But no one made the connection. Now, of course, I understand that Behcet's is difficult to diagnose; some of its characteristic features resemble other conditions (for example, Crohn's Disease has both apthous ulcers and GI issues). And I have recently learned that it can take years for all the symptoms of Behcet's to manifest so that a certain diagnosis can be made.
Moreover, this disease has a historical prevalence along the old Silk Route. In countries like Turkey and Japan the prevalence is very high but negligable in the UK. Some docs asked about my ethnic heritage or said "it" looked like Behcet's but probably isn't because I am not Middle Eastern, Mediterranean or Jewish.
About 4 years ago, fatigue became a frequent visitor; it would hit with vengeance, suddenly and without warning I'd be down for the count for days. I could literally sleep for 12 or 15 hours at a stretch. And the mouth ulcers got larger, more painful and lasted longer. I was afraid I had some sort oral cancer. I panicked. My primary care physician referred me to a specialist credentialed in 3 areas, rheumatology, immunology and alergies. He tested and tested; sent me to various and sundry other specialists. He suggested lupus. Polymialgia rheumatica. Somebody's Granulomatosis. Behcet's. And others. But nothing clear and definitive. He treated symptoms and used colchicine. Methotraxate. Medrol. And other poisins. With no positive benefit.
And More New Symptoms
While I was treated by this new doc, he discovered that I had an elevated protein in my blood -- some sort 'small clonal population'. He sent me to a hem/onc who watched it for a while and then discharged me as fully healthy! But within weeks, though, I was hospitalized for a severe anemia ~~ hemoglobin 5 and hematocrit 15 ~~ (normal references in that lab are Hemaglobin 11-15 and hematocrit 34-46). I was transfused with 3 liters of packed red blood cells and treated with 80mgs of prednisone/day and the search began to find a cause for the anemia. Four months later, I had titrated the prednisone down to 5 mgs/day with the added benefit of no mouth sores, no GI issues! That remission lasted for nearly 8 months leading docs to believe the symptoms were somehow related to or caused by the CLL and a dysregulated immune system. My hematologist at Dartmouth Hitchcock said that one of the mysteries of CLL center on whether the CLL causes the dysregulated immune system or the dysregulated immune system causes the cancer.
In the last 5 months, we saw the CLL as not only stable but a very placid dragon, indeed. But the other autoimmune problems of mouth sores and GI problems were raging on and I began to experience skin eruptions on my thigh (another classic Behcet's symptom, I later learned), forearm and cheek. My skin was biopsied; I was referred to a new doc, an immunologist/researcher.
You know the old saw? if it walks like a duck and talks like a duck,
it probably is a duck.
It is a duck. It looked like a duck before this but other docs were unwilling to be wrong or unwilling to take a risk. My new doc says he is not afraid to be wrong. And not afraid to admit he was wrong.
But this is not the 'rest of the story' (a la Paul Harvey). The story is still unfolding. I don't know what the Behcet's will do next. Having declared itself to be an oral, GI and cutaneous type of disease, maybe it won't evolve to the lungs, heart, central nervous system and eyes.
And since I don't know enough to be pessimistic (who said that),
I can only
Original art uploaded by Pat Spiller
from an altered book entitled, Singing With A Full Voice, 2006
Vintage paper, collaged/painted vintage lace, Lumiere paints