“IF YOU KNEW HOW REGULAR I AM…YOU WOULDN’T BE SO FULL OF IT”
My 30 Year Secret Life With Crohn's Disease
by
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By September 1979, I was sick again. Maybe it was denial, but initially I told myself that it was the stomach flu. After a couple of days staying in bed, balled up in pain from the stomach cramps and not being able to hold anything on my stomach, I finally decided to go to the doctor. Since Colitis wasn't a well known disorder back then, I guess I didn't realize the seriousness of the condition. And because the term Irritable Bowel Disorder still sounded so offensive to me; I remained quiet about it to my family and friends.
By the time my dehydrated body made it to the doctor's office, he was ready to hospitalize me for some tests to determine if my condition was Colitis or Crohn's. The tests they gave back then to determine whether or not you were affected with IBD were just as bad as the disorder itself. The first test I remember having to take was the barium enema test. I had to drink about a quart of this chalky flavored white substance that tasted horrible. It made me gag each time I attemped to swallow it. Then came the good old 'sigmoidoscopy' and 'colonoscopy' procedures. The preparation for these tests were just as bad as the tests themselves. I had to drink a gallon of liquid that also made me gag. I could not eat anything for a day prior to the actual tests. And the worse part was back then they would not put you to sleep for these procedures. You had to be wide awake. I can't even begin to describe the pain inflicted by these tests. Once while having the sigmoidoscopy test, I was in so much pain that I actually pulled my weave out of my hair during the procedure. I am so thankful that over the years, these tests have become painless. Now you are put to sleep. The preparation is the most uncomfortable part.
This time the results came back with the diagnoses of Ulcerative Colitis, which is a more severe case of Colitis. I was also diagnosed with severe anemia. After remaining in the hospital for over two weeks, I was released with instructions to remain on Prednisone and Azulphadine. I also began taking B12 shots.
Unfortunately, those that have suffered from this disease will know how I felt when I returned to work and was told that my job was no longer available to me. My hospitalization stay was for over two weeks, not counting the week or two I had to stay home for recuperation. I was told that my position had to be filled but they would contact me if another position were to become open. Therefore, I knew that I had no other choice but to find another job immediately. I could not wait for MacMillan Publishing to call me back (as if they were going to call back an employee with a pre-existing medical condition).
I decided to go to the temporary agencies for quick placement. Manpower and Kelly Services were good at placing you into a temporary job expediently. I figured this would provide me with some temporary funds while I looked for something permanent. Besides, I was still young and not financially astute. I had a little savings account but not enough to cover my rent for the next month. This was an emergency. It had always been my determination, since leaving home, not to have to call my parents for financial assistance. Therefore, I had to make the temporary agency work for me. I refused to make my family think that I couldn't make it on my own.
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About the Book
Not only will this story bring awareness on how not to rely solely on insurance companies for your future financial resources (should you unfortunately become disabled); it is also the story of my life’s lessons on successfully overcoming the challenges of living with a debilitating disease. These lessons can be used as a reference to the:
young audience beginning their life’s journey;
working person relying on insurance benefits should they unfortunately become disabled due to an illness;
person with any life-long illness; and
for the audience looking for an inspirational story.
This story spans my 30 year struggle with a chronic illness while attempting to climb the corporate ladder. Using tools which were part of my foundation, such as sacrifice, independence, spirituality and morals, I was able to fulfill dreams beyond my imagination.
I am very grateful that having worked for over 20 years in the financial industry, I had the money management skills which prepared me for my financial emergency. Unexpectedly, in February 2006, I was hospitalized, due to severe complications from Crohn’s Disease and my entire world began to shatter. Within weeks of being on medical disability, I went from a six-figure income to zero. Not only was I dealing with a deteriorating illness, but now emotional depression also set in. After spending hours on line with various crohns/colitis support groups, sadly it appeared that thousands of people are facing the same issues. Not only are we battling an incurable, debilitating disease and depression, but also financial hardships that can force you to lose everything while the insurance companies are using non-medical personnel to decide whether or not we are eligible for benefits. I decided to write this book to bring awareness of this disease to the public and all of the horrific baggage that comes with it.
About the Author
Toni Whitley, a single mom, currently lives in Auburn Hills, MI. Having spent her adult years in Newark, NJ; Dallas, TX; and Akron, OH, she has obtained various licenses and certifications over the years. As a fully licensed stockbroker, she has worked in the financial investments industry for over 20 years. Since relocating to MI in 1998, she has been actively involved as a member of the Auburn Hills Chamber of Commerce Program Committee; member of the Birmingham Chamber of Commerce; member of Inforum (formerly Women's Economic Club) Volunteer Committee and a member of The Boys & Girls Club of SE Michigan Advisory Committee.