I was fortunate to have my disease diagnosed early. Many patients with this disease find that it takes years to be diagnosed and treated. It took me three months from the first symptom, red eyes, to my hospital stay with kidney failure to be diagnosed.
Since 2007 I have written about problems I have dealt with as a patient who has to take daily chemo and prednisone. The meds changed my body type. I wore a size fourteen for many years, which is a good size for a woman who is 5 foot 8 inches tall. With meds, I gained over sixty pounds. As you can see on the cover picture, I also sported the moon face, large stomach, and dowager’s hump from long-term prednisone use.
So this is my story, with the ups and downs, and the gallows humor that helped me survive. I have said before that without my husband I wouldn’t have survived the first two years of illness and medication side-effects. So if you want to know what happens when a person who has been in good health suddenly loses her health, this is the book for you.
In January 2003 I spent two weeks in a German hospital before I was diagnosed with Wegener’s Granulomatosis. This collection contains my journey through a chronic illness. This ebook was written as remembrance for Vasculitis month (May) and to all of those people who have lived with and died from a chronic illness.
Updated Second Edition in 2014.
Also, you can get In the Shadow of Death and A Flicker of Hope combined in a trade paperback:
Reflections on Hair Loss
I used to have long golden blonde hair. When I was young about eight years old, I fought my mother for my hair. She wanted to cut it into a bob. I wanted to grow it long. After a huge fight which included an intervention from my father, I had my hair.
As I grew older, every couple of years I would cut it to my chin and let it grow down my back. One year it grew to my waist. I had learned by then that my hair was extremely thick and full so I rather liked my hair a little shorter.
Also, my husband liked my hair. He would touch my hair touch the ends and caress it. He would roll it in his hands. It was fine and thick, and he liked the feel of it. I used to be amused by his enthusiasm for my hair.
But, as you know, life changes things. What changed my hair was Cytoxan. Cytoxan is the first chemo-drug found to treat cancer patients. For Wegener’s Granulomatosis patients, it stops the inflammation response by suppressing the immune system. Of course, there are side-effects.
I was in a hospital bed in a German hospital and one of the doctors came into my room.
“We have found your disease,” she said, as she set up the I.V. treatment that was going into my arm. “Are you ready?”
“What is it?” I asked.
“You weren’t prepared?” she asked. She proceeded to name the side effects, which included infertility and hair loss.
I panicked. She gave me about ten minutes to decide whether I wanted the treatment or not. I have to admit that I was more worried about the infertility. I didn’t realize how much my childhood training had affected me. I was not a woman if I could not have a child. I didn’t want a child, but there you go-
I realized that without the treatment I would not live. I wanted to live so I agreed. I cried, but I agreed.
Two days later as I brushed my hair, clumps of it fell into my hand. I tried to ignore it, but in a few days, my beautiful long blonde hair became thin and brittle. I cried. My hair had been my beauty and it was gone. I was brave. I tried to forget how the hair lightly covered my bald spot. I wore brightly covered hats that I knitted out of yarn. I hoped that I wouldn’t be on cytoxan forever.
Later, more like four years later, I am still on chemo-therapy (not cytoxan). My hair has grown back thick and curly instead of thick and straight. But, that beautiful gold color is gone. I am now a dark dirty blonde with few highlights.
I try to forget the beautiful mane that I lost. It is the price I pay to be alive.
I try not to cry about hair.