An article from the December 2000 Newsletter.
I was diagnosed as an Addisonian four years ago. My “case history” has been a long one, starting twenty-one years ago, when I was diagnosed with juvenile diabetes, at the age of seven. My life has been difficult, to say the least, and my Addison's showed “itself” frequently over the years.
My mother was always telling me to go and wash my face, because it always looked dirty. I would stand in the bathroom rubbing my chin and neck, until it was so sore and red that I couldn't rub any more. I'd come out of the bathroom, sure that I couldn't get any cleaner if I tried, only to be told to “ get back in there, stop mucking about, and clean that face!”
I was an outcast at school. I was called “ half-caste”, because even though I have the blackest hair ( - a bit greyer now), I had two blonde patches at the back. My eyes are hazel, but one has a strip of blue in it. Between the pigmentation and the diabetes, no kid in their right mind was going to hang around with me. So I became the classic “loner”. I won a scholarship in my final year in Primary School - so, even though I had no friends, I had brains and the money to pay my way through High School.
High School, was a low point. I'd manage to find a friend, only to have some strange mood swing, and consequently lose the friend. I fought a lot, physically. So, eventually, everyone left me alone, and whispered behind my back about how weird I was.
I met my husband, at the age of seventeen, in 1989. We were married in 1993. And he's still with me. I don't know that I could have “ put up with me “. He's been through so much.
In October, 1993, I discovered that I was pregnant. Everything was O.K., until the 30th week. I started to have contractions. I continued to have contractions for the next 6 weeks. Then, all of a sudden, it all stopped. I opted for a caesarian section, because my baby was breach, plus the complication of the diabetes. I have a beautiful little girl named Gabbie. I worry about heredity, with both diseases. At the moment she shows no symptoms of either condition.
The first “real” signs of the Addison's, was in January 1996. I noticed blue-black marks in my mouth, on my gums, and tongue. I was told I wasn't looking after my diabetes well enough, and that the marks “weren't there”. In fact, my doctor didn't want to hear any more about it. So, I went to another doctor, who told me the same thing. He also suggested that I was in a severe state of depression, and needed psychological help immediately. At this stage, I began losing weight. It was gradual at first. Everyone commented on how good I looked, and asked me for the secret diet I was on. When I answered that I wasn't on a diet, I was just inexplicably losing weight, the comments were: “Yeah, right, the fat fairy“, and, “Is Jenny Craig really that good?”.
I consistently lost weight, and became a “monster” to be around. So, I went back to the doctor. He told me to “get off the diet, and have another psychological report done”, and gave me a script for a tranquilliser. Then the vomiting started. It was cruel, because I was sooo hungry all the time, but no sooner did the food go down, than it came right back up again. I cried every time this happened. I started to look really bad. My eyes sunk into my head, my lips became black, and the pigmentation was obscene, to say the least. I became bed-ridden, doing crosswords, knitting, and watching T.V. That, was my life. I craved salt. I would pour it on everything, and even resorted to sucking on rock salt, to try to satiate the craving.
Eventually, the crosswords had to stop, because pens wouldn't work for me. (Has this happened to anyone else?). I found it strange, and frustrating, because in the end I was so weak that I couldn't speak. I had to write to “talk” to my husband. My heart beat so fast, I thought I would have a coronary any time. I had bed-sores, and I was so COLD!! I felt clammy all the time, and cold. And my moods swung from monster to delirious tyrant. My husband Shane did everything for me. He carried me to the bathroom, bathed me, and looked after Gabbie as well. If it wasn't for him, I wouldn't be alive. He is my angel. I was determined not to die in hospital, but a fall during the night, changed my plans.
The doctor we called for a home visit, took one look at me, and ordered me, kicking and screaming ( weakly ), to hospital. Before I became so ill, I had weighed 63kg in January. By November of that year, I was down to 45kg. In the two days it took to figure out what was wrong with me, I lost a further 2.5kg. I only had hours left. Before I was transferred to another hospital, a nurse came in, and told me how selfish I was, and asked how I could do such a thing to my husband and daughter. When I gasped that I wasn't doing anything, she said, “ You're anorexic. Fancy doing that! Have you looked in the mirror and seen how revolting you are?” I tried to reply that she didn't look that good herself, but what was the point? I did want to prove that everyone else was wrong in their assumptions, but was so weak in myself.
Finally, after a massive dose of cortisone, and umpteen drips, I was conscious enough to be told I had Addison's Disease. The doctor was laughing when he said this, which I didn't much appreciate - especially as at that time I thought he meant that I had terminal cancer. A few hours later, my appetite returned with a vengeance. I ate, and ate. My stomach hurt from eating, but I just couldn't stop. Five days later I weighted 58kg. I left hospital a new woman!!
My husband had a grin,
from ear to ear. My little girl finally cuddled me without hurting me, and
my mother was beside herself with joy. But… it's not the happy ending you
might imagine. My old doctor has moved away, and the new doctor is as
uneducated as the last one. I need help with my medications, and still feel
that they are “not right”. I'm currently on: Cortisone Acetate, 25mg a.m.,
12.5mg p.m.; Florinef, 1 tablet every second day. I have been put on another
anti-depressant, but the combination of all these, has added weight around
my middle. Juggling diabetes and Addison's is very difficult, especially
without much help from my G.P.
P.S. Janene would like a pen pal. Contact her through Jim Sims.
