Om shanti shanti shanti Om

The mailman delivered my mail to my neighbors' house. It was a letter from the local CF council. My neighbor returned it and said, "That's what you have, right?" I've lived here for 7 years and it is the first time that Cf has ever come up. When I was on IVs last year they called to ask what was going on, but I just said I had a bad infection. I didn't feel like going into details. I was sort of embarrassed by the mail thing. Partly because it just seemed like it was a secret, which seems dumb.


I went to yoga on Thursday, the first time I have been oback since 2006! I practiced Kripalu Yoga for five years religiously at a beautiful private studio. It was fabulous, so I am very yoga spoiled, but once I had baby #2 and stopped working it was just too hard and too expensive to keep going. I have been a yoga snob about going to yoga at the Y though, after having had such a great experience with my instructor at Tree of lIfe - despite the fact that yoga at the Y is free with your memebership. Anyway, finally my friend convinced me to go. Once I got over trying to compare the two in my mind and just gave into the practice, it was great. I am very sore. What I was capable of doing yogically 5 years ago is NOT what I can do now - though I tried a few times and gave my self a friggin charlie horse. Silly. I will go back though. I didn't realize how much I missed it.

I'm about to get sick. The guy on the elliptical next to me is constantly coughing up phlem! Its been 30 minutes and I can't take it much longer!

The above was posted by one of my friends as their status update on FB. Oy. She doesn't know I have CF, I don't think and probably the guy was a 100 year old smoker, but I still felt like posting back a snarky comment. I didn't.

how long 'til my soul gets it right?

An old friend I'd found on Facebook emailed me yesterday. It was an article from a San Franciso paper that mentioned CF and the cost of caring for CF. I actually had no idea that this old friend even knew I had CF. And that he'd think of me after all these years. It was interesting. I wrote him back and further explained some of the information the article touched on. And I was OK with that. There was a time I would have been mad at someone for sending me a Cf related article because I WAS NOT LIKE THOSE PEOPLE. The farther away that time gets, the funnier it seems.

So the swimming. I realized yesterday that I am not pushing myself as hard as I can because I don't want to cough. I still cough a bit as it is, enough for someone to comment on it already. But if I really start working I am going to do some serious coughing and I just don't want to. While I have masterd the ability to cough underwater and cough while swimming (oh, yes I have!) those aren't productive enough coughs to be able to hide a serious coughing attack. Damn this disease.

I also had another swimming epiphany. My dad put me in competitive swimming when I was 9 as a means to keep my lungs clear as I was completely out of control if my paretns tried to perform manual CPT on me. I HATED the swimming. I was always the smallest, slowest one. I could never keep up. After 20 years it finally occurred to me that maybe that was Cf related??

Now, I have to admit that changed in high school. The team I was on as a kid was a serious USS swimming team. When I got to high school I was actually pretty good, because it was a different caliber of swimmer and having trained as a USS swimmer for years before I was not too shabby as a high school swimmer, which made me like swimming a lot more. I eventually became a co-captian of the team and was an alternate at State. But still, I did hit a plateau in my swimming that I never did get over while other girls who had been slower than me eventually passed me by. It never, ever occured to me until just the other day that Cf could have had a thing to do with any of this. But maybe it did? If so, I am actually glad I was in denial for so long, as how easily that could have become a crutch or an excuse for failure?

way across town a phone rings all through all

I did it. I called the local Cf chapter today. No one answered, so I rambled on the machine for a bit, realizing as I did that I really have no plan. But I did check out the CFF guidelines for starting an adviosry group (thanks Betsy) and with my germy, disorganized clinic, I think this is what I'd like to start with: simply an email chain where epople can share ideas, etc, escpcially in making our clinic better...and we can see what develops from there. This, I can do. Email and I are like two peas in a pod. I am not a good fundraiser and don't always have time to give manpower hours with the little ones, so I think I could actually do something like this. We'll see what they say. Wel, what can they say? No, you can't? ha. I mean come on. I just need access to email addresses I guess, so hopefully people will help somehow in getting the word out.

Also, I joined facebook, which is funny. I admit I do have a voyeurisitc myspace page under a completely false name and meail so that I can spy on people, but the facebook is real. I have been so anti these networking sites....but it is becoming an addiction, looking up folks. I just wish I could see their pages wihtout needing to friend them, because the 7th grade boyfriend doen't need to be on my friends list, now does he? But the best part is, so many of my CF friends have found me. It is so exciting to see a new person has added me to their list. And it is funny that I spent so many years trying to disassosciate with the CF world to find that the very people I didn't want to know have come to be the ones I enjoy and who have accpeted me the most. How things change. Thank you, O valiant Cfers (and people who love Cfers), I love you all!