Life with CF — Page 14

Yesterday’s Thing: I Outrun CF

March 21, 2011

Yesterday was the great, national Outrun CF virtual run day! CFers, family, and friends everywhere signed up for a DIY outing wherever, however on the same day under the same name. It was really pretty cool to see people putting up their times and distances on Facebook throughout the day!

Since it’s been over 2 weeks of trying to get my new antibiotic to take care of my sinus bug that has also been causing some lung issues, running was not going to be an option. Beautiful came downstairs dressed to go out and I proceeded to cough my head off for the next 2 minutes as I put on my shoes. Yeah! Really ready to go out, eh? We had already decided to walk instead of run, but with these circumstances, any other ideas I had of being awesome went right out the window.

Being a beautiful March day in Tampa, it was well over 80 degrees, so even with the delightfully thin “I Outrun CF” shirt, by the time we walked up and down our street, I was sweating down my back and we called it a day. I’m over 30, not on O₂, not on IVs, and I’m not on the transplant list, so walking up and down the street was still kicking CF’s butt.

With Great Power Comes Great Responsibility

March 16, 2011

Source: unknown

This weekend made for a really nice connection with another Fibro in a way I totally didn’t expect. Related to what Beautiful and I are pre-occupied with, I found another CFer about the same age who had experience with the same thing. Since it’s still a deeply personal topic that we are still keeping quiet (so quiet only 20 or so people know), I contacted him privately and asked if I could discuss it with him.

Few things warm me up to a person as fast as sharing something close like this that other people don’t know about, but because he opened himself up to me to discuss it, I feel profoundly privileged to have that time and information. Later, when we “come out” with what is going on, I will be the first one to step up to the plate and return the favor to others who need someone to lean on.

“With great power comes great responsibility”

I feel the same way about many of the things that I have experienced so far: sinus surgeries, getting a port, testosterone injections, discussing marriage and my childhood. I love to share and help others who are struggling with what they are dealing with because it brings a level of purpose to having this wretched disease. “With great power, comes great responsibility,” Uncle Ben taught Peter Parker. Though our “power” is of a different nature, knowledge and emotional fortitude as a result of life experiences is power.

Sometimes – often – it is difficult to see a silver lining around what is going on. [Read more…]

Why I Am Not a CF Sufferer

March 8, 2011

I hate the terms/phrases “CF sufferer” or “I/they suffer from CF.” If there’s something you want to do that is sure to send me over the edge, refer to me as a “sufferer.” Do I lead an easy life? Heck no; I struggle for breath and limit some of my activities based on what I can do on a given day. Still, I wouldn’t expect the local paper to do a story on me opting out of the 5K race due to my infection with the headline: Local CF Sufferer Misses Out Again. That would be ludicrous.

Of course we suffer from time to time. More often than not in some peoples’ cases, but that’s not a reason to label your life as one of suffering.

“Suffering is a state of mind, not a state of body.” – Jesse Petersen

When I see someone with spina bifida or cerebral palsy who is bound to their wheelchair and often in pain, yet they live their life with a smile on their face and bringing delight to those around them, who are we to say that they are suffering unless they tell us, “Hey, I am suffering down here. Don’t you dare have fun around me!”

I don’t associate with those who are suffering. They aren’t any fun and don’t add value to my life. It’s like some people are hypertonic by adding their life to everyone else and others are hypotonic, taking the life out of everyone around them. Disease or disability or not, people don’t want to be with hypotonic people because they will suck the joy out of anything and anyone. You know those people. Those people are the sufferers.

So, the next time you hear that phrase or are about to use that phrase, just think to yourself “does this person really act like they are suffering?”

CF Fatboy Turns 1 Year Old

March 7, 2011

I knew I started CF Fatboy as a Posterous site about a year ago, so I dug through my first posts to find the first one that I wrote residing here, in WordPress, using my full skill set to really make it a place to come and become a community. In a post titled, Goals for Week 2, I set forth to start compiling helpful and insightful mini-articles to both document life with CF and explain it for those who want to learn more.

In the last year the site has grown from nothing to 228 articles, 1301 comments, hundreds of thousands of words, and way more thousands of visitors than I ever imagined. I had no idea this many people would be reading about my/our daily life with this wretched disease that I still refuse to say that I suffer from… and by now, many of you know why I refuse to use that term. I don’t think much has changed in the way of my writing, but perhaps I’ve found more of a balanced CFer and life as a husband and business owner “voice.” These very things are what shape my day-to-day life more than in the past, when I was merely getting by in life and wondering when the axe was going to fall or the ice was going to crack all the way through. Inasmuch as it depends on me, I own my life now and what I can’t do on my own, I rely on Beautiful and from help above… and even a little more from others when I humble myself enough to accept it.

[Read more…]

Yesterday’s Thing: I Outrun CF

With Great Power Comes Great Responsibility

Why I Am Not a CF Sufferer

CF Fatboy Turns 1 Year Old

Time Elapsed Since IVs