My mind has been working on overtime lately, think a lot about what it means to have CF. I have lived the last 14 years not really understanding what CF is really about. I always just thought, well I have this disease, but its mild and it really doesn't affect me with "classic" symptoms. I'm healthy. I always just assumed this would be the extent of my disease...antibiotics a few times a year, keeping up with exercise to stay healthy, four clinic visits a year just to stay on top of my care. I didn't really think about the disease progressing. I just lived thinking that the disease would always be mild, even as I grew old.
Then my sinus problems came along. Everything changed. I discovered CF "catching up with me." I realized I needed to understand what was going on and why and what treatment options were available. That is when I discovered the CF community. Blogs, forum, facebook, a whole world out there dedicated to people with CF. Places I could ask questions, find answers, and even make friends. In the process, I also discovered what CF is all about. How horrible this disease really is. It made me start thinking about the possibility of my own disease progressing.
I realized that thinking about this constantly is not productive. I called my clinic's social worker. I'll just call her Mrs. Wonderful. I have never called the social worker before, so this was new territory for me. Mrs. Wonderful is well, wonderful. She was welcoming to my call. She had great advice. She told me I need to change CF into something positive. Also, she thought I could benefit from the book Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn. She also told me about classes my health care provider offers that help with various ailments. We found "Mind-Body Medicine for Stress" to start. I have not bought the book yet, but I have signed up for the class.
Since talking to Mrs. Wonderful, I am feeling so much better. Just having a plan in place has been help enough. Mrs. Wonderful even encouraged me to call her on a regular basis, even if I am doing well. Maybe just to even say hi. I really appreciated her saying this to me. I like having reassurance. It is also a good reminder to take care of my emotional health too.
She gave you good advice. You and I have such similar health histories. I used to go to cf.com a lot and read and post. I spent most of my online time there. Then I realized I was thinking about it too much. I had become "the person with CF" and I don't want it to be that way.
ReplyDeleteHave a good day!
Hang in there lady! It's scary but you're doing great! Call Mrs. Wonderful when you need a pick me up! You are a huge role model for me! Riley's gene may be different and she may not be as healthy as you when she's in her 30's? But gosh, I hope so! Keep living life :)
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