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Be Compliant… or Else!

Fatboy - new shirtIt’s sad to say, but I’m talking to/about myself with this one. I’ve been writing a post for 4 days now, but I’m in a completely different state of mind now, so I’ll post it later as a reflective piece. Today, I’m kicking butt and taking names again, but Friday wasn’t so much of the same.

I went for an unscheduled clinic visit Friday because Tuesday was a day of misery. I was wheezing and whistling. Each breath was labored. I was coughing up junk with each cough and I was having dozens of spazzes every day. The only things not happening were bleeding or fever.

I was down almost 10 lbs since Feb. 18th, but I blew the same PFTs: 35%. It didn’t make sense how I could feel this bad and still have 97% O2 sats while constantly being out of breath. 97%!! I don’t have that when I feel like a friggin’ ox!

The doctor came in and took a look at my numbers and what I wasn’t doing every day came from Sue… and me. He asked, “Why?”

Chronic entrepreneur

I’ve been under a lot of stress making sure we have enough money to pay our bills each month now that Beautiful stays home. The amount our budget has gone up since I worked in the office is profound, and now we’ve subtracted her income from the mix. It sure makes budgeting easier to just say, “This is how much you need to earn this month,” but I feel the physical effects of the stress in my lungs.

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Not Letting Your Guard Down

I came up with a new analogy for cystic fibrosis this morning talking to Beautiful. I’ve been struggling with my breathing and nose for so long now, she is sad that she’s never seen me struggle to breathe for so long. We’d have always done IVs by now, but we are waiting until June because of my many, many resistances. Between you and me, I don’t think it will be lung functions that put me on the transplant list, it will be resistances. When they no longer have any way to fight the next infection, we sort of have no other way to turn.

Oh, my new analogy, you say? Right. I’m the bunny trail king.

World-class boxer

I can’t let my guard down. Having CF is like being a really, really good boxer. I’m sure it’s happened otherwise, but even the best boxers of all time got knocked down a good many times in their careers. What makes a difference between them and the guys who are never remembered is how hard they hit when they get back up again. My whole life has been like that Chumbawamba song: “Tubthumping,” a.k.a. I Get Knocked Down (minus the drinking and “pissing the night away”). Can you tell I graduated in 1997? You always identify most with the songs and movies of your youth.

We can enjoy the good life… for a while, but then CF comes around for another round and tries to kick the crap out of us. It usually succeeds, to a degree, knocking us on our butts and calculating our next move. The key is to keep a good head on and get up again. This is where so many people fail with dealing with CF and other chronic illnesses.

If you don’t get up, the disease wins.

If you don’t get up, you have destined yourself to a life of people either feeling sorry for you or getting on with their lives and leaving you behind to wallow in your own self-induced misery.

It’s not enough for us to wait for regular life to come around and knock us down, even though that will happen, too. We have been dealt a bad hand and I, for one, am out to see how big I can win with this hand. It’s different than just bracing yourself for the A/C going out in your car or your roof starting to leak. The stakes are bigger.

“The Plan”

You have to set up your defenses of a healthy weight, improving your immune system, staying away from sick people, doing your treatments, getting good medical care/coverage, and surrounding yourself with positive, realistic people who are on your team.

Be on the lookout for the warning signs: increased coughing, weight loss or loss of appetite, being worn down, odd smells of any sort coming from your body that all indicate a rising infection. Then contact your clinic right away to let them determine what the next steps should be in light of your history.

Call to arms

A lot of us are getting knocked down right now. I know of at least a dozen of my readers and Twitter friends who are either in the hospital now or have been in and out all Spring. I feel you. I’m right there with you, just not in the hole myself. I’ve cut back my hours working on projects, took a couple of naps this weekend, and really took some time to take care of myself to recharge for the week.

Together, we can do this.

The Power of Words

The power of words is potent. The words we use mean a lot and say a lot about those using them. It’s a big stretch to say that they mean everything, because actions speak louder than words, but we are a species that communicates with words – whether spoken or written, heard or read.

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This is why I am so picky (some would argue, touchy) with words. Words convey so much more than people realize until they really think about it or until words affect them in a profoundly positive or negative way. I do not suffer with (or from) CF. At some point, I may be suffering from the effects of CF, but that is an entirely different statement by the message it conveys about one’s state of mind.

A sufferer is a victim. A person suffering from the effects of a disease or disability is someone with pain or a difficulty who refuses to let that be ruler of their lives. This is why I used to be so hesitant to let people know about my CF. Not so much now, but I’m still not going around as a poster boy because I’m a husband, Christian, entrepreneur, and lover of fine books and food long before I’m a CFer.

CF doesn’t define me; it is only a semicolon in my Webster’s entry. I would be giving up too many of my personal liberties to take on the shroud of that label, and I’m simply not willing to succumb to the debasement of my personal view of myself or the view others hold of me. One day I may very well need help from people, so until that day comes, I’m going to give to others.

What words are you using? How can you change your words to change your life like that man?

Finding Meaning in the Trials of Life

Hiding Behind HandsIt’s been pretty common for me to be able to look back on events a few days, weeks, or months back and be able to at least see some good in something bad that happened, even if I don’t see the actual reason why something bad happened. I’m introspective and reflective like that, especially with the number of boring jobs that didn’t utilize my brain to the fullest… even if my hands and feet were busy all day.

What I’ve always had a harder time doing is finding meaning to – the deepest reason for – the worst things. In fact, I went a whole 31 years before I had anything more than an inkling about why I have CF. The best I’d been able to muster before the end of last year was that people are always watching me if they know I have CF to see how I respond to things of life and to see if I ever use it as a crutch or if it’s consuming me.

On several occasions since I was 18, I’ve had adults many years my senior tell me in small groups or in private that they admire me for my courage or whatnot that had an impression on them… but that doesn’t seem like enough of a reason to me. Does it to you? That’s along the same lines as reasoning that I have CF solely to bring glory to God by not despising Him through my times of suffering or trials. While I whole-heartedly agree that is a piece of sanctification, I don’t think it’s reasonable to conclude that this disease exists and affects certain people of all walks of life in order for some of them to shine and reflect good through it.

I believe I’ve found the meaning, at last. I mentioned it yesterday and once earlier: I have CF so I can help those who come along behind me. [Read more…]