13 September 2007

Lost and Found

So last week I found something I had lost. Or I guess the correct way to say it is that I was lost and someone found me. I had been lost for a long time. And just like something lost for a long time, I had nearly forgotten how nice it was to be found and how much I missed it. For someone lost in the struggle with CF it can be a lonely road. We are forbidden to have contact with other CF'ers for fear of cross-infection. There is rarely anyone who really knows what it is like to have CF, so relating to people can be hard. Especially when you want to relate about CF.

Well I have been found, Katherine Heigl (at least she looks like Katherine Heigl.) Found me on google, or actually found an old website that I haven't updated for a long time. She had the courage to send me an e-mail, after me being lost for 18 years. I say courage, because it takes courage to do that. What if I didn't remember her, what if I just blew her off. Well of course I remember her. And we quickly renewed our friendship right where it left off, just like we hadn't been away from each other for nearly 20 years. Also KH has been through, what I am. Strangely enough she was diagnosed with CF. We grew up at CF camp together, then one year they did DNA testing on all the CF patients at camp. There was about 12 people who suddenly found out that they didn't have CF. KH was one of them. So this puts her in a unique position, she understands the CF patient better than anyone. She knows what it feels like directly. There are not that many people in the world that can relate that way. So I feel like I am no longer alone in the battle. And someone found me that can relate to CF like no one else around me.

It isn't very often that someone comes along that you connect with on such a level that you can continue right where you left off. KH and I have had that connection for some time, we just didn't realize it could cross 18 years. For me it has been a wonderful journey back in time to a place where I always felt normal. A place that only those with CF were normal. The non-CF were the abnormal people. It has been rejuvenating for me to be back with someone from the old crew. There aren't many of us left these days. Hopefully KH will be around for a long time.

04 September 2007

Some Days it Would be Nice to Have a Few Extra Spoons

Maybe you don't understand what I mean. I have wanted to talk about the spoon theory for some time now. I thought I would post the link to Christine Miserandino's page that has the spoon theory story. I have talked about this kind of thing many times, but her spoon story really helps capture the image that I have been looking for. It means more since JG's sister has Lupus. Check it out, but be prepared. Don't read it unless you really want to know what having CF (or some other Chronic Illness) is like, and have a box of tissue ready:

The Spoon Theory

There is one difference that people with CF have. She talks about when she was diagnosed and suddenly had to think about things she never thought of. With CF we are taught at a young age that we need to think about these things. We have a limited number of spoons from the beginning.