Dayton USAF Museum - ยฉ2010 Jesse Petersen
Ever-Improving CFers on the Rise
August 19, 2010
It’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.
I’ve seen a lot of clinic visits being posted and tweeted about with great results with my new-found friends with a couple of unfortunate hospitalizations and a bad case of c-diff. It almost seems like everyone is doing a better job taking care of themselves and the meds are working. Go figure!
It doesn’t come without sacrifice on one end or another, though. For us, it’s co-pays out the nose, making budgeting impossible. For others, it means being on disability (which means you darn well better be compliant if you’re just sitting at home, right, right?). For others, it’s just a hard life that I used to live with a split life of work, school, family, and treatments. I’ve only crossed off school from that list, but once you enter into the family part, it’s a whole new world.
The Ebb and Flow of Cystic Fibrosis
August 17, 2010
There is a song that’s sort of famous, written and sung by some guys from across the pond from me. To Everything There Is a Season. This is the season of thinking about seasons for Fatboy. They practically stole the lyrics from the Old Testament, and it was a quick topic of discussion last night at our small group – one that Beautiful didn’t get to go to because this is her season of not being able to function with whatever is ailing her like allergies from Hell. I feel like we are in the middle of several seasons at once.
It’s a season of feeling helpless. We have no idea what is bothering Beautiful’s nose so much, but she has lined up an appointment with an ENT/allergist Friday. Hopefully it is a productive consult instead of a (who knows, $200) consult that leads to several more expensive appointments before getting any answers. She just came home early and went up to sleep because her medicines were rendered useless upon arriving at work on Monday, so maybe it is workplace related.
Then there is the season of hope and ambition. Business is up and down, but September starts new things, as I begin a new venture teaching WordPress webinars to musicians and recording artists so they can do their own websites. I’ve never taught a webinar. I’ve done training calls, but never anything where I carry on for 45-60 minutes and then have a Q&A time. It’s very exciting, especially given the income and exposure potential. People just need to show up and I need to not suck.
We are also in the season of new friendships. Beautiful just began blogging in May and the combination of this site and hers has really increased the number of CF contacts we have. We’re seeing blogger after blogger getting their double-lung transplant after about an average of 2 years on the waiting list. Thankfully, not one has not made it to transplant or had an unsuccessful surgery or post-op. We are also close to meeting with another couple who live about 20-30 minutes from here and see the same doctor. Hilariously, we both asked Sue on the same day what precautions we need to take in a face-to-face meeting at a restaurant. I’ve never felt the need to make or have CFer friends and have gone as far as purposefully avoiding it my entire life because back in the day, CF kids were dropping like flies. Who wants to make a friend only to lose them the next year? I think we’ve come far enough to make a couple of friends.
What season(s) are you in?
