The chronicles of a man with cystic fibrosis just trying to live a good life.
June 25, 2011
NYRR Front Runners Gay Pride 30th anniversary run
On the heels of an historic vote by the New York state legislature, passing a bill that will legalize gay marriage 30 days after the governor signs the bill (with exemptions for churches), the 30th Front Runners Gay Pride run took place in Central Park at 9 a.m. on a very warm and extremely humid Saturday morning.
The route was changed to be the top 5-mile loop, which includes the Harlem Hills and was run counter-clockwise (regular direction) and so was the harder direction, as runners went UP Cat Hill instead of down. And despite internet predictions that the run would be more celebratory party than a run, such was not the case. The bill passage was mentioned during the opening speeches, but that was it. Other than that, I personally found the run to be blessedly run-of-the-mill in execution.
I ran my IVs while on the trains up to the race, changing from meropenem to vanco on a runner-packed 4 train, which drew several curious glances. I continued to draw those looks as I picked up my bib and cap before the race. I guess someone walking aroiund with a strange-looking bottle in their back pocket and a coil of tubing snaking up under his shirt is not the norm. The Vanco ran out just before the race started - great timing. I have yet to run while actually doing an IV and didn't want to try it today. It's bad enough I kept my shirt on to keep the line extension from bouncing around. (I would have loved to have run shirtless today.)
NYRR has their corral system down pat. Excellent. I didn't bother traipsing all the way back to my purple corral - I just waited until most of the pack had passed before joining the crowd. I crossed the starting line 7 minutes and change after the horn. Now, this is important to note because I think I got too close to the chip readers before the race and so my start time was not recorded and my official net time reflects gun time, not net. RunKeeper backs me up on this. So my real time is 1:04:something, good for just under 13 minutes/mile. Water stops were well-placed after the first one, which didn't come soon enough - no water in the first mile. Also, some Gatorade would have been nice.
I wish I had done better, but my lungs are really not in good shape right now. Despite improved PFTs at the doctor's office two days ago, I still feel tight almost constantly and the humidity really didn't help this morning. I was walking more than my legs would have needed and downright gasping for breath at times. Several full stops in addition to walk breaks. In fact, two of those came in the final stretch, where I was in a steady, slow jog I thought I could keep up, but found myself so short on breath I had to pause for a few seconds to bend over and try to suck in an actual deep breath. Didn't exactly work, but did help me keep going.
My "people to beat" targets all beat me, except one. These are the people you notice you keep passing and who keep passing you. I'd have beaten the fat girl in red, I think, except I had to stop in a porta-john on the crossover. I admired her slow-but-steady technique, even if her breathing was so loud and so fast, even on downhills, that I was worried she was going to collapse on the spot. I probably could have beaten the very tall, very overweight black gentlemen I chatted with before the race, but he got the best of me in the last half mile, dammit. I did, however, come in ahead of a girl who, for some reason, thought that a lace top makes good race gear. No one, of any shape or level of fitness, at any time, should wear lace as running clothes. Ever. OK?
This was, in short, a miserable run for me. I couldn't get my mind off my lungs and I couldn't get them to work for me. I am giving very serious consideration to getting a decent road bike fitted to me and switching over. At least on the bike once I get going, I can keep going at a pretty good clip without breaks in the rhythm. Are there bike races in the city? Would I have to become a clown-colored-spandex-wearing, pedestrian-cursing douchebag? I hope not.
June 12, 2011
IVs started
I was able to postpone starting IVs until last Friday evening, because I knew what was going to happen: fatigue, irritability, sleepiness from the Benadryl, etc. And it has. In short: I knew I'd have to put a big rec x through this Saturday and Sunday. So be it.
I am going to try to get a few things done around the house today, but am putting off exercise. I know a run would probably make me feel better, but I just don't have a lot of energy. I'm planning on doing an after-run work tomorrow of about 4 miles.
So the IVs consist of Meropenim 3x day, Vancomycin 2x day, and tobramycin 1x day, along with 2x day Bactrim orally and a typical Prednisone bump, which by the end of the weekend will be 40% over.
I am going to try to get a few things done around the house today, but am putting off exercise. I know a run would probably make me feel better, but I just don't have a lot of energy. I'm planning on doing an after-run work tomorrow of about 4 miles.
So the IVs consist of Meropenim 3x day, Vancomycin 2x day, and tobramycin 1x day, along with 2x day Bactrim orally and a typical Prednisone bump, which by the end of the weekend will be 40% over.
June 10, 2011
Another one breathes easy
"Breathe easy."
"Breathe easy."
"Breathe easy."
This is the most common comment left in Youtube, facebook, and online memorial guestbooks when someone with CF passes away. It is simple to understand why. After a lifetime spent trying to breathe with less difficulty, losing ground little by little, and ultimately losing the war, death frees us. Whether there is life after breath, who knows? But if there is, we hope our friends are, indeed, breathing easy.
Alyssa Marie Crank -- breathe easy.
"Breathe easy."
"Breathe easy."
This is the most common comment left in Youtube, facebook, and online memorial guestbooks when someone with CF passes away. It is simple to understand why. After a lifetime spent trying to breathe with less difficulty, losing ground little by little, and ultimately losing the war, death frees us. Whether there is life after breath, who knows? But if there is, we hope our friends are, indeed, breathing easy.
Alyssa Marie Crank -- breathe easy.
June 9, 2011
Ten minutes
I'm stepping out to get some grub in ten minutes, but thought I'd post first.
Had a doctor's appointment today. I outlined some of the problems I'm having, such as the low blood sugars at night and, of course, increasing tightness and shortness of breath, etc. I'll have to talk with the endocrinologist soon.
We did PFTs of course, and they were the lowest I've ever had. FEV1 is 20% of predicted. :( I had no idea I'd slipped that far - I don't feel *that* short of breath. I ran 6.5 miles on Sunday. I'm a little winded at the top of stairs, but nothing like what I've experienced before. And yet the numbers don't lie.
So IVs will start again Friday. For the record, my last ones were in December, not September as I'd thought. So I managed a six-month stretch. Not too bad! But I'm not looking forward to the side effects of the IVs, such as the yeast infections. For that matter, I'm also going on a course of White Candy (prednisone) and not looking forward to the side effects of *that* either.
I've also dropped some cash on a new window AC for the kitchen. The old one was 11 years old and had just had it. I'm setting it out on the sidewalk with the trash tonight. The one in the bedroom is 8 years old and seems to be holding up OK. The new one in the kitchen has some automatic features for saving energy (I just heard the fan lower a bit, now that it's finally cooler in here) and has an ionizing mode. :) It is 12,000 BTU and heavy as hell, but I managed it. It has to cool 2/3 of the apartment, so I needed a big one.
Had a doctor's appointment today. I outlined some of the problems I'm having, such as the low blood sugars at night and, of course, increasing tightness and shortness of breath, etc. I'll have to talk with the endocrinologist soon.
We did PFTs of course, and they were the lowest I've ever had. FEV1 is 20% of predicted. :( I had no idea I'd slipped that far - I don't feel *that* short of breath. I ran 6.5 miles on Sunday. I'm a little winded at the top of stairs, but nothing like what I've experienced before. And yet the numbers don't lie.
So IVs will start again Friday. For the record, my last ones were in December, not September as I'd thought. So I managed a six-month stretch. Not too bad! But I'm not looking forward to the side effects of the IVs, such as the yeast infections. For that matter, I'm also going on a course of White Candy (prednisone) and not looking forward to the side effects of *that* either.
I've also dropped some cash on a new window AC for the kitchen. The old one was 11 years old and had just had it. I'm setting it out on the sidewalk with the trash tonight. The one in the bedroom is 8 years old and seems to be holding up OK. The new one in the kitchen has some automatic features for saving energy (I just heard the fan lower a bit, now that it's finally cooler in here) and has an ionizing mode. :) It is 12,000 BTU and heavy as hell, but I managed it. It has to cool 2/3 of the apartment, so I needed a big one.
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