"I Don't Want to Waste My Life"
By Elaine (Submitted October, 2004)
The last normal day of my life was the first Sunday in March of 2002. It was a nice day too. I didn’t go to church that morning because my father was sick, and I wanted to cook lunch for him. I baked a ham and made a cocoanut cake, both his favorites, and the entire family had a nice lunch together.
After lunch my granddaughter and I drove to Kmart where we both bought some matching ten dollar watches, and after that we went to our church’s groundbreaking ceremony.
About eight o’clock that night I told my husband that I didn’t feel well. I had had a couple of bladder infections in the past, and it felt like I might have one now. By the next morning I definitely felt bad.
I went to see my family doctor who told me that I probably had a bladder infection. She gave me an antibiotic and told me I should be fine. I wasn’t. I faithfully took the antibiotic, but I didn’t get any better so I called her and told her that I wanted to be referred to a urologist.
By this time I was in agony. The urologist scheduled some tests, but before I could have them my father passed away. I attended his funeral in absolute misery, and a week later I had a cystoscopy.
The doctor told my husband that I had an infection, but I didn’t get to talk to him. I assumed that he was right, for I did feel better. I felt better for two weeks. One night I was sitting at my computer doing some work when that horrible urgency and frequency came back. The problem had returned in a big way.
I went to see the urologist who told me that he thought I had interstitial cystitis. I’m still not sure why he didn’t share that diagnosis with my husband. Maybe he thought it would be better to tell me in person. At any rate, I didn’t even know what IC was. When he told me I broke down and cried. I had a great life, and in the space of a few weeks I felt as if I had lost everything.
One by one I had to give up activities that I loved, for my case was severe. I couldn’t exercise anymore, and I so enjoyed it, but if I moved around the pain and discomfort was almost unbearable. I couldn’t eat the foods I loved either. I wouldn’t have minded giving them up if it had made me feel better, but it didn’t.
My work suffered too. I’m a teacher, and it’s hard to teach if you can’t stay out of the bathroom. My friends and I always enjoyed traveling together, and that was out too. They were sympathetic, but I don’t think they could quite understand why I couldn’t go with them.
So, my world became smaller and smaller, and no treatment helped. I tried DMSO; it didn’t help so I went to Virginia to see BJ Czarapatta. We tried some alternative therapies and antibiotics, but that didn’t help either. I started taking Cysto Proteck, elavil, and hydroxizine. I still felt awful.
I had read about Elmiron, so about eight months after I got sick I started taking it. After about three months it seemed like I felt a little better. I also started doing heparin instillations once every two weeks. I did feel better, but better is a relative term. I was still miserable.
Finally, the doctor upped my Elmiron to 600 mg a day, and I started doing the heparin instillations twice a week. Finally, two years after I got this thing I was feeling a little better.
I decided to see if I could take back some small portion of my life. I tried walking, but that was still pretty hard so basically I still can’t exercise. I did take a few trips, and if I took it easy I could manage fairly well. I found that I could now eat some of the foods that previously had irritated me, but I can’t eat citrus fruit, chocolate, or watermelon, and they are three of my favorites.
Since I still had to rest so much I decided to spend some time writing a book. I considered writing about someone with IC, but I changed my mind. I didn’t want to think about IC. I wanted to think about normal, everyday things so I wrote a novel about an ex-convict who falls in love with his boss’s daughter. To my surprise a small publisher, Oak Tree Press, published the book which is titled A New Leaf. (Check it out. I’m so proud of it! Go to www.oaktreebooks.com or my website www.elainecantrell.com)
I’m never going to feel fantastic again, not unless the researchers find a cure, but getting my book published has taught me one thing. My life isn’t over just because I’m sick. I may not feel great, but I only have one life, and I’ll be darned if I waste it. My sister lives in Alaska, and this past summer I met her at Walt Disney World. I couldn’t spend as much time at the park as I would have liked, but I did get to see her.
I keep up to date on the newest IC treatments, and I talk to my doctor about them. I pray for myself too. At first I thought it might be selfish to ask something for myself, but I decided to ask and let God sort it all out.
I don’t dwell on being sick either. It was very hard to see myself as anything besides useless and sick, but I’m trying very hard, and I do feel better about myself.
My best advice to anyone unfortunate enough to have IC is to keep trying to find a therapy that works for you, and if one doctor won’t accommodate you find one who will.
Good luck to you all.
Revised: 3/01/05 - kj