Just being able to say that makes me so grateful. I savor each word as it rolls off my tongue. A surge of emotion wells up deep within my chest, and I feel like I could burst.
My life before
Having been sick with a rare autoimmune illness for a third (9 years) of my life, I had been through some pretty difficult times. This illness struck me down suddenly and rapidly. I found myself in hospital, swollen, colicky and nauseous. I was poked, prodded and jabbed, and underwent an interesting kidney biopsy where a few choice pieces of my left kidney were cut out from me while I observed the entire procedure. 'Henoch Schonlein Purpura' was what the doctors said. Statistically speaking, I would lose kidney function in 10 years, would have to be on corticosteroids for the rest of my life.
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| Gracie back in those days, with puffy steroid-induced moon face. |
For the next 9 years I was consumed with finding a cure. I tried every diet you could think of, every therapy out there (you can read about my gastronomic mis-adventures here) The doctors couldn't really tell me why I was sick, much less what I needed to do to get better. I continued to work, and completed my Ms and PhD degrees, during this time. I stayed active, but could no longer participate in many of the outdoor activities that I loved - any overly strenuous physical activity caused my kidneys to start acting up. I was constantly holding back, always having to remind myself to take it easy, not push too hard.
Fear
There was something about being chronically ill and in pain that changed the person I was. I became afraid. Afraid to push myself too hard. Afraid to eat foods that I thought (rightly or wrongly) were bad for me. My long-term use of the corticosteroids caused my skin to become paper thin, and I became afraid of falling or hurting myself. I bruised easily. I had developed osteopenia (early stage osteoporosis) and was fearful of falling. It was a sick fear that permeated my psyche, and despite my naturally optimistic and positive personality, this fear was constantly present. (you can read 'me and my steroids' here)
Fight
I felt I was fighting for my life, and time was running out for me. I relapsed frequently, each relapse worsening my already fragile health and further damaging my kidneys. Eventually I developed multiple chemical sensitivities and allergies to everything from perfumes, newsprint, car exhaust, you name it. I felt helpless as my world became smaller and smaller. I hardly dared to venture out of my safe house for fear of being exposed to odors and other substances that made me horribly ill. Even taking the steroids ceased to help.
Turning Point
I somehow managed to complete my PhD and executed an elaborate plan to keep myself alive in a new safe office and safe home. I spent my after work hours scouring medical journals, reading extensively about weaning off steroids and building adrenal sufficiency. After 3 months on an Atkins-type high protein diet, I was successfully reducing the steroid doses. And after 8 months, I was steroid-free!
Today
Nearly one year later, I still can barely believe that I am free of medication, and show no signs of illness or sensitivity whatsoever. I am cured!
So.
I am going to do my first triathlon this year.
xo Gracie
(Note: I unfortunately had my worst relapse a few months later following a family crisis but recovered somewhat after almost two years. I recently completed a mini-triathlon and went on to complete my first sprint triathlon too! This is the hand I've been dealt and I'll play it the best I can. I'm just grateful to be alive. Grace, 25 July 2011).
