Cystic Fibrosis Fatboy — Page 82 — The daily quest to gain weight

New Series Coming: What CFers Do

May 22, 2010

I’m not an ultimate creator of cool ideas, but I can take a good idea and make it my own pretty well. I’ve seen “What White People Like,” “What Black People Do,” and a book called “What Christians Like.” That got my gears turning, “hey, I’m a member of a special group!” Sure, I could write about the white people and Christian things, too, but that would be pure mimicry – that’s just not me.

So, starting this Monday morning I will be introducing the first in what I hope to be many weekly posts on things that CFers do. If I must, I will spin off into “What CFers Like” and “What CFers Hate” to keep the series going long enough to write a book.

My Life “Before I Had CF”

May 20, 2010

I didn’t always have CF.

You can ask Beautiful.

Of course, that’s ridiculous. I’ve always had CF – I just didn’t behave like I should have given reality. Treatments were an option based on how I felt at the time and how effective I thought they were. At the top of the list, and the only indication in lifestyle, was my definite need for enzymes. Even those would get snuck in at a meal without people being wise about what was going on. I had accepted that if I was going to need IVs every 6-9 months, why bother with all of the time, effort, and money to go crazy with treatments that, in my mind, may or may not be as effective as I deemed to be a worthwhile treatment.

I avoided stairs on campus whenever possible. I always seemed to have an excuse to not help someone with a physical task as simple as bringing something in from the car because I didn’t want to have a spaz. I didn’t remember what a semi-deep breath was like. I didn’t pay attention to my weight because it was depressing to weigh in under 110 and I had no idea how to look “normal.” I didn’t want to exercise because I felt like I couldn’t exercise (remember the part about stairs?). I wasn’t as happy; in fact, I may have actually been a bit of a drag at times. I am the eternal optimist to the point of being annoying, but I felt even that slipping away.

[Read more…]

2010 Great Strides Walk – I won

May 15, 2010

I made my Great Strides walk a race. I didn’t want anyone walking faster than me; after all, I am a superhero who goes by the name of Fatboy. The walk started at the entrance of the Lowry Park Zoo and led us around a mile or so loop around the exhibits. It was pretty easy stuff, but I had a hard time getting my team to keep up with the poor guy with 58% lung function. Can you tell I’ve got a competitive streak a mile wide and won’t take pity from anyone? I’ll cream you before you give me pity.

When we finished our first lap, Doogie Howser was standing at the Entrance/Exit thanking us for coming. We were done in 17 minutes, so there was no way we were going after waiting an hour for the walk to start… after a 40 minute drive to the zoo… after 5 months of raising funds. It’s supposed to be a 5k, after all… so we told him we were going around again until we hit 3.1 miles as he got on his radio/phone to find out why the heck I wanted to keep dragging my team around the zoo at 6:47 in the evening.

[Read more…]

Great Clinic Visit

May 14, 2010

Well, folks, Beautiful was right. Again. She always is, so remember that, fair peoples of the world. I told her that I was feeling junky and concerned that I needed to get on IVs before vacation in June, so I moved up clinic to today. I was wheezy, but was hoping it was due to being an off month for my wonder aerosol. I started back on it yesterday and have had 4 doses so far – the wheezing has stopped.

Here is where it gets amazing: my PFTs were better than they have been for quite a while. Aside from results when I was on a study, it was the best since 2008. Here’s what is going on:

Date	Weight	FVC	FVC %	FEV₁	FEV₁ %
2/19/10	114.4	2.1	49%	0.98	27%
3/19/10	119.1	2.24	52%	1.24	34%
5/14/10	116.6	2.49	58%	1.32	36%

I got to see the head doctor today, which only happens about once per year, so that was a treat. He didn’t rush out either, because he chewed the fat about my graduation and work, and then moved on to talking about re-doing his medical site and forum for patients. I think it will move quickly, so I’ll be posting those as completed projects when they’re done.

This Saturday is the Tampa Great Strides walk, so I’ll be seeing my coordinator 3 times this week, since she’s on my walk team, too.

So the moral of the story is this: Beautiful’s ability to predict my health not only includes my being sick, but my wellness, also. If you ever want to know how I really am, ask her, not me. I clearly don’t have a clue.

New Series Coming: What CFers Do

May 22, 2010

I'm not an ultimate creator of cool ideas, but I can take a good idea and make it my own pretty well. I've seen "What White People Like," "What Black People Do," and a book called "What Christians Like." That got my gears turning, "hey, I'm a member … [Read more]

My Life “Before I Had CF”

May 20, 2010

I didn't always have CF. You can ask Beautiful. Of course, that's ridiculous. I've always had CF - I just didn't behave like I should have given reality. Treatments were an option based on how I felt at the time and how effective I thought they … [Read more]

2010 Great Strides Walk – I won

May 15, 2010

I made my Great Strides walk a race. I didn't want anyone walking faster than me; after all, I am a superhero who goes by the name of Fatboy. The walk started at the entrance of the Lowry Park Zoo and led us around a mile or so loop around the … [Read more]

Great Clinic Visit

May 14, 2010

Time Elapsed Since IVs