The main part of my story began in 1996 when I was diagnosed with Ross River Fever. Because of severe arthritic symptoms which seemed to be connected with this disease, I had an ANA blood test and the results came back with an extremely high titre 1:1280 and also an accompanying note that said, "This patient may have Lupus."
The pain in my joints was horrendous and I was sent to a rheumatologist who told me that there was nothing wrong with me: "It is all in your mind." I keep having severe pain and bouts of fatigue that were totally debilitating. My family couldn't understand what was happening to me.
In 2002, we moved interstate and I saw a new doctor who put me through another heap of blood tests which revealed still high titre ANA, low iron levels, and very low B12 levels. This doctor was also interested in my family history. My maternal grandmother had died in 1941 of pernicious anemia and now we think that she suffered from some of the problems I have; likewise my mother.
To make a long story (or journey) short, since 2002 I have been diagnosed with lupus, Sjogren's, B12 deficiency, mild pulmonary hypertension, Celiac disease, Type II diabetes (diet/exercise controlled) and now the specialists are seriously talking about CREST. Six weeks ago I had my gall bladder removed.
I have refused to take various steroids. I had tried them early in the piece and they did nothing except make me feel worse (of course, as they DO NOT cure anything).
Some days I feel rather depressed about all of this but them I realize that there are folk who have far more problems than I have. What can't be cured must be endured.
Email: [email protected]
Story edited 06-25-09 JTD
Story posted 07-01-09 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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