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.
Along came the shift in mindset the week I started CF Fatboy to change all of that. I got the bigger picture and got the crazy idea: what if I’m actually able to reverse the effects of aging with CF and become as healthy in my 30s as I was at 18? What if? Is it going to be worth it? Well, it sure beats the heck out of an automatic need for a transplant… one which I might not be eligible for if I’m not doing everything prescribed. I know for a fact that my doctor won’t put you on the list if he catches wind that you’re non-compliant, so I’d be up a creek without a paddle if things took a turn for the worse later.
Here is my new view on living with CF since my 2010 epiphany:
- It’s okay to pretend you don’t have CF around other people. It’s up to you when you let people into your “circle of trust.”
- Don’t let CF slow you down. Make it drive you to bigger and better things than you think you can do.
- Don’t meditate on what you used to be able to do, rather use that as a goal to return to. For me, it’s to run (competitively, not some crap jog/shuffle you see on the side of the road when people think they’re jogging, but they look like an idiot) in the Gasparilla 5k next February. I used to run track, play flag football, men’s softball, and indoor soccer (the last 3 into my college years). I shall return in my 30s.
- What you were born with is better than anyone else’s equipment in you. As awesome as it’d be to take a deep breath with new lungs, make it your goal to take a deep breath with your lungs. Even after insurance, it costs about $1,000/mo to keep new lungs alive and your life is wrecked for 10 weeks of monitoring, physical therapy, and recovery.
- Everyone can improve if they start early enough, barring really nasty resistances or other complications that exacerbate the CF. Beautiful started finding the stories and sending them to me – people who went from 30% to 68% or higher. At 60%, I was doing windsprints and beating guys to the end zone for the long pass. I want that again. I will have that again, and you will see it happen.
Who’s with me?
Great post! You seem to be well on your way back to “normal” with your victory at your Great Strides “5k.” Keep up the eating/exercising/compliance!
Thanks. It was an empty shell of a victory compared to a 5k race, but still
cool that I had to drag my team at the super-fast CF pace. I'll get my real
satisfaction in 2011.
Shoot! You had me huffing & puffing walking with you across the parking lot! If I haven't said it before, I really love the transformation that happened when whatever it was clicked in your brain. A 5k would be an awesome accomplishment coming out if where you were 3-1/2 years ago. Wow!
At graduation? Well, I had adrenaline!
Great to hear about your plans for the 5k! It will be fun to follow how you do!
I'm so proud of the effort you have been putting in to get back on track. It is definitely paying off and making a big difference!
Thanks, baby!! You're a big part of it with all of the help, support,
and impressed-ness.
Great attitude! Lots of luck with the 5k… Would love to hear the stories that beautiful shared with you in regards to improving lung function!
Thanks. I need to start that training some day soon…
I don't think either of us could find them at this point. She was just
finding them on the CFF forums and forwarding them to me or beating me over
the head with them over dinner. My skull is pretty thick, so it took some
real beatings over several months.
Awesome post, I too have CF but until I was diagnosed with CFRD I lived as if I didn't. I haven't had an 'epiphany' as you have, but wish I could get my mind in the same state that yours is in!
– JT
May your epiphany happen sooner rather than later. Thanks for reading
and dropping a comment.
Awesome post, I too have CF but until I was diagnosed with CFRD I lived as if I didn't. I haven't had an 'epiphany' as you have, but wish I could get my mind in the same state that yours is in!
– JT
May your epiphany happen sooner rather than later. Thanks for reading
and dropping a comment.
Sure wish you could convince my 16 year old to see it that way. I can't even get him to look at anything positive or even think about taking care of himself.
It's a rough age, and there's really not much you can do to stop that thinking. It's analogous to having ex-cons come to a high school to try to keep kids from doing time. 95% of the kids who are in gangs are going to keep doing what they're doing regardless of what anyone says or how they reason with them.
Until it snaps in his head that some day, these may not have been good choices, he's going to be where he is – the same as any negative behavior that has delayed consequences. Show him how young some of the people in my blogroll are on the transplant list. Some of them are old. Some, like Unknown Cystic are in their late 40s and not on the list and not transplanted. It all depends on how you live your life.
Life will give you what you put into it, for the most part, especially regarding doing or not doing treatments.
Thanks, this helps me feel what my daughter is going thru & will go thru….insight!
Insight is good, eh?
Hey Jesse,
While I’m not planning on running in a 5K, I do plan on reversing the affects of my CF. I’m glad to see that someone else out there already had the idea and was able to pull it off. That gives me hope. The doctors don’t really believe that I can do it. They say it’s a progressive disease and that you really can’t go back. I’m damned and determined to prove them wrong. My PFT’s suck right now at FEV1=17% but am still walking around without oxygen. I’m also eligible for the transplant list but only want it as a last resort. I’m 40 and don’t plan on going anywhere soon. With just the fact that I don’t use oxygen when walking, I know there’s a light at the end of the tunnel. Just curious how everything is going now?
@busterc69 I tag my visits with “clinic.” https://cffatboy.com/2011/09/post-clinic-update/ Dang, at 17% I’d be using O2.
I’m at the place now where after 3 amazing years, I know feel my health slipping and I’m at my lowest weight since I was 17 (I’m now 25). After finding this blog today and reading your pieces, your words have only confirmed with me that change is needed. Gotta up the calories and get exercising more regularly. Thanks for expressing to the world the things we CF’ers all feel on a daily basis – I’m looking forward to your next post and burst of encouragement.
I’m glad you’re finding this helpful. I am just sitting down now to report on my clinic visit to post later this afternoon.