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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.


  1. Kristi Bowers says

    Good article.

  2. It is great to see such a vibrant and inspiring young man taking CF by the balls and living life anyway. You’re right. You can do this. I’m really glad to have found you, and I’m stoked to be bookmarking you. ๐Ÿ™‚

  3. Couldn’t agree more. Sometimes when your cornermen (doctors) ask you to change up your strategy a bit (increased treatments, exercise), just do it!

  4. Lauramagsamen says

    Jesse- I love that this has become a team effort. “Together, we can do this.” Jordan’s CF friends have become so important to her, even though they will likely never be able to meet in person! Thanks again for an uplifting post!

  5. MiddleAgedLady says

    You are so right! I think the mental & emotional toll of always standing vigilant lead me to my times of feeling overwhelmed. But I’m a scrappy fighter or I wouldn’t have lasted 56 years w/CF. And even though I’m way older than you, I adore the Tubthumping song for the same reasons as you. I even thought about making it my ring tone but decided it might be too annoying. ๐Ÿ™‚ Go to the mats, CFers!

    • BAM! To the mats! I’m opening iTunes right now to see if I have the song in
      my collection for some working music to start my day now that ALL of my
      treatments are done: 4 Trio/Altera nebs and 2 PARI Sinus nebs and a Vest