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Don’t Be Like Skinnyboy, Be Like Fatboy

If you’re married with cystic fibrosis, you’ve probably heard from your spouse something about how much you mean to them. I sure hope you have, or you’ve got something to talk about now. I’m one of those who’s heard this several times, but just not been able to make that “be enough” to enact the change I needed to make. Call me stubborn again. I’m not sure what it was that did it, but it was over about 36-48 hours that I decided it was time for a complete overhaul of what I was doing. Shoot, I’m going to hit an FEV1 of 80%, right? Right!?

We still want to have kids, and you have to ask yourself if you want to be alive, be on the couch on oxygen, be like you are now, or if you want to be thriving. If there is anything you can do to thrive, would you do it? What if it’s as miserable as doing treatments every day, budgeting extra money for preventive care and high-calorie foods? We spend an extra $84 every month for my Boost Plus drinks. I remember when I couldn’t believe I was paying $40/mo for high speed Internet, which I used for a good 80 hours/week! That is what sacrifice looks like.

Gotta have goals

Since I have my dream job of owning my own company, I have the freedom to exercise without a boss telling me when I have to be at the office or at my computer at home. I can also head to the CF center to take part in trials or (at the very least) not have to make up missed time for clinic visits. We made over $500 from taking part in a trial this year, so keeping your numbers up high enough to enter studies is yet another good reason to stay healthy. If my numbers were even higher, I could have entered 2 or 3 more last year.

Goals for me for this year include getting my FEV1 to at least 50%, but really pushing for 60%. I honestly don’t remember how that used to feel, but I remember what I used to do: bike for 20+ miles, play collegiate flag football with guys more than twice my size, and bench 150% of my body weight while leg pressing over 350lbs.

Gotta have priorities

You simply HAVE to position yourself to make your health important. To take care of yourself is to love your spouse and family. To not take care of yourself as best you can is to take away precious time they could have had with you, even if you were stuck on the couch with a neb in your mouth.

Get up early enough to do your treatments. Eat enough food to get/stay at a healthy BMI. Take it easy when you’re not feeling well. Make exercise a priority to keep your lungs nimble and your muscle mass up.

Comments

  1. Unknowncystic says:

    Excellent post.

  2. Jesse Petersen says:

    Thanks, Unknown! It was part of another post until I surgically removed it
    based on my writing experience in Adv. Composition this semester. 😉

  3. Great post so true.
    Keep up the good work.
    I am loving the blog BTW

  4. Thanks, Kevin. I appreciate that a lot.

  5. philwebb says:

    Amen! This winter in S.C. was long cold and crappy. One of the reasons I moved my family here was due to the climate. I played golf on Dec 5 the first year here. I always got sick during the winter months up north cause I try not to go out too much, then you sit around more, then you get bored and couch sit, blah blah. I thought SC weather was great. Until this year. I was sitting around doing nothing. My last Clinic was on May '09 and my PFT's were ok, my #'s were 1.90 and fev1 was like 55, I think. So, in Jan I bought myself a late Christmas Present the P90X discs. I thought to myself, I HAVE to do Something and that system just looked tough to me. I started it and within 3 days, I could tell a difference in my breathing. I'm now on my 4 week. I just went to Clinic on the 23rd and my #'s were 2.20 and fev1 was 58 I think. I had a 8 or 9% increase. The Dr had to look back 3 years ago to see number that good. I don't sell the disc, I'm not associated in any way, I just beleive my numbers are good cause I pushed Play on the dvd player and did the best I could. My Doc sat in front of me and said, OK what's the deal, did you take your inhalers before you walked in or something? I told him no, I started P90X and on top of that I've been off my Neds for over a week, cause I went to Hawaii the week before. He was floored.
    Ok, wrapping up. I hope you can kick some butt and get your FEV1 up! If you decised to get P90X you can buy it through me…no just kidding, I got mine cd's on Amazon.com take care

  6. I'm starting with the Wii Fit Plus and walking with Beautiful after dinner when it's not raining. Eventually, I 'm going to need more, tough, if I'm going to do that 5k.