Random Thoughts on Living with Cystic Fibrosis

I dream of feeling free, to engage myself with all that I see.

I dream of taking steps that lead further than my own front yard.

I dream of laughing without choking, and singing or dancing without coughing.

I dream of waking up each morning and bounding out of bed, and just taking off, somewhere, anywhere.

I still remember how it used to be when I could dance without gasping for air or my heart feeling like it was going to explode… times when my heart raced out of excitement and joy versus out of desperation to support my lungs with the oxygen they need.

It wasn’t too long ago that I had bigger accomplishments each day than simply walking up the stairs or taking a shower.

I no longer sing made-up songs about the cats or the weather or anything else that tickles my fancy, because I can’t spare the oxygen.  

I no longer dance when I hear my favorite songs, because that, too, requires my very precious oxygen. 

Instead, I shake my hands and shoulders with as much energy as I can afford to give to them.
I cannot laugh easily anymore. It robs me of my breath.

I work hard to strengthen my muscles so that they can take on some of the effort when I’m doing something strenuous like folding laundry or walking up the stairs or taking a shower.

I have to monitor my oxygen levels when I eat, because even a partially full stomach can make it hard for me to breathe.

Why has God taken my ability to dance, sing or laugh?

Today I am having a hard time seeing the glass as half-full. We, as humans, have the gift of such pleasures, and I feel robbed.

College and Cystic Fibrosis: Who/ What/ When/ How/ Why to Tell People about your CF

I came across some amazing news recently – nearly half of all CF patients are older than 18.

Courtesy of the Cystic Fibrosis Foundation https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

Courtesy of the Cystic Fibrosis Foundation

That means the patient population is growing up!! How amazing is that? It means so many things, and for some of us, it means:

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No matter where you are in your self-identity journey, it’s never easy to know when to “come out” with your CF. And now that you’re going to college, you wonder, who do I tell? Who should I tell? Who do I need to tell? Who needs to know, really? It’s nobody’s business, right?

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New Series: For Parents with Kids with Cystic Fibrosis

I frequent several online communities for people with Cystic Fibrosis and their caregivers, and I sometimes see the same questions asked by parents of young CF patients – how do I get my kid to eat? To comply with treatments? To feel “normal” when he/she’s the only “sick kid” in school?

I thought that I would harness my life experiences (I was a kid with CF once, too!), draw upon my natural propensity for creative solutions, and consult the “child within” who has helped me develop the perspective I’ve dubbed as seeing through “pink-colored glasses”.

xmas1972

Christmas 1972, one month after my 1st birthday, and days before I was diagnosed.

I plan to write a series of posts geared towards helping parents help their kids cope with living with CF.

Some ideas I’m working on…

  • Kids, food, and gaining weight
  • Complying with treatments and medications
  • Surviving a hospital stay
  • Dealing with the stigma of being “THE sick kid in school”
  • Managing everyday life with CF always hanging around
  • CF and Self-esteem

I hope to share some ideas that might make living with CF a little bit easier for both your child(ren) and your family. I am not a health professional in any way, and you should always consult you/your child’s doctor about making any changes to their current regimen, but I have 44 years of experience living with CF and hope that some of my experiences can help you, your child, and your family navigate the muddier waters outside the medical stuff.

Stay tuned!

Growing Older with Cystic Fibrosis – Two Sides of the Coin

Sometimes, life with Cystic Fibrosis makes no sense. You can go years without needing to go into the hospital or requiring IV antibiotics, and then suddenly need to do so five times a year. One day, you can have a relatively manageable lung function, and a week later lose half of it with a single infection flare-up.

I’ve seen each of those scenarios play out often enough to not trust CF one bit.

You see, we can do everything right – perform hours of airway clearance a day (my doctor wants me to do six hours when I have an active infection), inhale medications morning, noon and night, take dozens of medications and supplements, eat high calorie meals to replace lost calories spent simply breathing, see our (many) doctors regularly, gand o into the hospital for maintenance and acute flare-ups – and most us still aren’t going to live a “normal” or “typical” life span. Continue reading