I think I have been ill since about the age of eight years. When I think back to symptoms that my mother and an aunt presented, they may have had Bechet's Disease as well. I recall terrible mouth ulcers as a child, painful joints (doctors called growing pains), and lots of stomach and bowel problems. My childhood was unhappy and very stressful. I became very competitive and an over- achiever, trying to gain recognition. It became very important that I excelled in whatever I engaged in. Failure on my part was totally unacceptable.
My disease process was very insidious with only one symptom at a time appearing. Seemingly I would go for a few months between episodes during my teens. In my twenties I developed bladder problems and a worsening of gastrointestinal symptoms. At thirty-two years of age I had to have hysterectomy and then after the operation I developed an infection. Having been bombarded with antibiotics I then developed a serious yeast (Candida) problem. After nine months of intense treatment for Candidiasis I was sent to Vancouver BC and diagnosed with a 'white cell defect' with disseminated mucocuraneous candidiasis. For years I tried everything conventionally available. BCG scarification, amphocerecin B, Lovamosol (had an agranulocytosis) and became critically ill. I was put into isolation for one month. I had sterile hepatitis, encephalitis, thrombosed veins, bilaterally in the legs, diabetes insipidous. I seemed to be moving through life with 'a disease de jour' - gastrointestinal and mouth ulcers, bowel problems with protracted diarrhoea, glaucomairitis (eye disease). This I experienced alongside bouts of profound fatigue and joint pain. I continued to drive myself and work in a high profile, high pressured job which had a lot of stress. I got to the stage that climbing a flight of stairs was difficult and making my way to the parking lot at shift end was difficult.
I returned from a vacation in January 1990 feeling exhausted, with a lot of diarrhoea and excruciating pain in left arm and chest. Eventually I was diagnosed with 'acute brachial plexitis' and I lived with that pain for one year. In May 1991, I developed bloody diarrhoea, genital ulcers, iritis etc. Sigmoldoscopy revealed coin lesions. I was then flown by air-ambulance to Vancover BC where diagnosis was confirmed. I was given Imuran and steroids, colchicine which had a dramatic improvement on the solid ulceration of my palate as well as on the ulcers in my ear canals and my scalp. I was thought to have menino-encephalitis and to have possibly suffered a stroke because I had left side weakness although CT scans showed no lesions.
For two years I bounced from one crisis to another. Five vertebral compression fractures, pneumonia with peci-carditis, three attacks of herpes zoster (shingles). I tried Chloambucil, Sandimune (everything but Thalidomide). I was becoming increasingly “klutzy”: tripping over shadows, lint on the rug, developed a stutter, 'forgetting' how to walk upstairs, banging into furniture, becoming sloppy in the kitchen and finding it difficult to drinking from a cup. In 1993 I asked for an MRI. This showed lesions bilaterally in my parietal lobes. I was given methotrexate, but my cognitive abilities continued to decline.
In 1998 I learned of Campath from Lisa Maxfield of London and though the Internet I and got hold of Dr Lockwood's published paper. Based on this I made up my mind that Campath was the only logical way for me to go given my circumstances.
Salient points: lost my job, lost my identity (due to physical changes with steroidal use – just didn't recognise myself or my voice). Self esteem took a hike along with my libido, acquaintances disappeared (out of sight and out of mind). Friends remained but did not really understand the complexities of my disease. Being realistic, it's hard enough for me with a nursing background to comprehend. To find nursing colleagues, however, treating me like the village idot really cut to the quick. Some people want to shout at you, thinking your hearing is gone as well as your physical appearance – they treat you like you are mentally incapacitated and presume directions are not recognizable etc. I've been addressed like I'm not physically present.
Since 1991, I have lost my job, my sick husband and the lake house and property that we built together. I have also lost my ability to fly and navigate my boat. I've had to dispose of my 'toys'. The one constant in my life is 'Sam-Achoo' my blue point Siamese cat who loves me unconditionally. The thing I miss the most of all is my mind!!