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They Are Leaving on a BIG Jet Plane

STS-134

Photo credit: NASA.gov

Tonight (tomorrow) at midnight, we are packing up with my best man and his girlfriend and the 4 of us are driving from Tampa to the Cape to watch the second to last shuttle launch Monday morning just before 9am. We’ve got Beautiful’s allergy-free snacks, ham, juices, and chicken salad packed along with my Newtons, Oreos, Boosts, drinks, and hard-boiled eggs… along with caffeine pills for all of the driving at strange, sleep-deprived hours.

I did my evening treatments on time after dinner tonight and am feeling great, but I’ll bring my inhalers along and we should be back around lunchtime tomorrow, so I’ll do my treatments when we return home rather than pack all of that extra stuff and scrounge up batteries for my Trio and Altera. I may not get enough calories during the first part of the day, but I’ll make up for it later.

STS-134 launchpadWe are pretty excited because this is the first time we get to spend any time with his girlfriend and it’s been pretty long-term, but she is attending college in Chicago, so he’s moving up to the area to be a paramedic with the CFD this summer. It will be our first and last chance to spend any time with them as a couple, and we are really looking forward to seeing who’s got my best man all knackered. I’ve known him since he was about 10 years old, but now he’s 25 and has me by more than a head in height and a good 50lbs. I was his youth group mentor back in the day, so seeing him like this, well, it gets me choked up. Just don’t tell him I told you.

We’ll have plenty of photos and video posted sometime tomorrow here and over at Kristinology, so until we return, have a great night.

The Return of Fatboy

Too fat

July 15 2010

I’m sick and tired of being sick and tired about my weight, living under the guise of “Fatboy” and resting on my laurels from last summer.

No more!

As an avid listener of Dave Ramsey, who says “If I can control the man in the mirror, I can be rich and thin!” I have to take the same approach to my life and get me under control so I can be rich, healthy, and fat. Same principles apply: control yourself, don’t go with the flow. No more preaching from my soapbox about what I did do or what others can/should do to improve their lives. This is “go” time again for me, same as it was last spring.

What is the State of the Fatboy?

Sadly, I went from 135 at the end of the summer in 2010 down to a weigh-in of 103 a couple of weeks ago. That was the straw that broke my back this year. 103! The last clinic knew, I was 116 in April when I said I was dying because I was so exhausted and losing weight and coughing constantly. The doctor amusingly looked at me, saw and verified that I was non-compliant because I was working my butt off on both ends of the candle (you know the saying) and needed to do my darn treatments and take a break.

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10 Basics of Gaining Weight With Cystic Fibrosis

Do you have any tips for me to help me gain weight?

Porking outThis question keeps popping up via my contact form, so I guess it’s time to put my best tips that are spread out in various articles into one place to make it easy. Keep in mind that these are general tips for CFers that are approved for me by my doctors and nutritionist, so please check with your team if there’s anything here contrary to what you’re doing or what you’ve been advised of in the past. Shoot, check with them no matter what, okay?

Having a healthy BMI is crucial to having a healthy lung function. Check out this study summary for a fresh look at how you can turn your life around by gaining weight.

I don’t have CFRD, but I do my very best to keep my sugars as low as I can while still getting enough carbs to help boost my caloric intake some. The overall rule to gaining weight is: bring in more calories than you burn – exactly the opposite rule of losing weight. It’s really more of a second full-time job if you already have one or a first full-time job if you’re in school or on disability – make it a priority.

  1. The first step to to try to find out over the course of a week how many calories it takes to add some weight, any weight, without losing any. You absolutely must be consistent with your liquid intake or you will significantly throw off your calculations with water weight, especially if you’re on a high sodium diet like many of us are. We are probably NOT talking about 2,000-3,000 Calories here. For me to gain weight, I need to pack away 4,000-6,000 Calories per day. You’ll want to use a phone app or spreadsheet to track your intake for accurate numbers.
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Starving Already, But Just Wait

Here it is, already 10:30am here. I got up at 8:45 after staying up until 1:30 so I could be sure to drink Boost as late as possible and also help me sleep. Both were accomplished quite nicely, but I’m already starving. I’m so hungry, I’m imagining the smell of blueberry muffins: a food I’m not even particularly fond of.

Our plan is to leave at noon and fill up the Kia with gas so we can make it to TGH and check in shortly after 1pm. With surgery scheduled for 3:30, I won’t be out until 5:30 or so and normally spend 2-3 hours in recovery (or PACU, as they call it). If I were a betting man, my money would be on my staying the night, considering that I bled enough to change my dressing every 3 minutes for hours in October. Even 12 hours later, Beautiful was still changing my dressing every 30 minutes at midnight.