CF Awareness Month | Living with Cystic Fibrosis

May is CF awareness month. Typically the CF Foundation hosts their “Great Strides” fundraisers this month. The movie theater may jingle a can for spare change for the “Jimmy Fund” during previews or you may even be able to buy a red sneaker sticker at the grocery store…all to support research and funding for the Cystic Fibrosis Foundation. 
I have Cystic Fibrosis. I mean, it’s something I wish I didn’t have, but I also wished I had a million dollars. There are some things we can control and some we can’t. I can’t control the fact that I live with CF. What I can control is buying lottery tickets… ha! No, seriously, what I can control is how I choose to live my life regardless of having CF. 
Part of living with CF, actually, a huge part of living with CF, is your daily care. It takes a lot to stay healthy. I do nebulizers, physical therapy, normal exercise and breathing exercises. I take pills (lots and lots of pills), I do inhalers and I try to eat upwards of 3,000 calories a day… and that’s when I’m healthy. When I’m sick I do more things. Sometimes I even do 2-3 weeks of home IV’s. 
One would think that after almost 23 years of doing these things, they would be old hat–that it would get easier. It doesn’t. I use alarms on my phone to remind me to carve out time during my day to do my treatments. It’s a huge mental struggle as well. Every time I open my medicine drawer it’s a reminder that I’m different, and that sometimes my life can be unfair and hard. But then I do my meds and get on with it.

Another big part of your CF care is going to Clinic. I see a great team at Johns Hopkin’s Hospital every 2-3 months. Again, this is when I’m healthy. My visits could be as frequent as every 2 weeks when I’m sick. I went to clinic yesterday for my 3 month check-in. As soon as you enter the hospital, after getting your bright orange patient band, you don a blue mask. It’s critical for CF patients to mask up since the ‘bugs’ we culture in our lungs can be easily transferred to another CF patient. The less we culture the better we feel.

You get your weight checked, you do a breathing test called a PFT, or pulmonary function test, and then you get seen by a bunch of people. You come up with a plan based on how your lung function looks. I was at the hospital for 4 hours yesterday. Thankfully, my lungs look pretty good. My weight finally went up, and we have a great plan in place for when I move to Florida. 

While my life with CF isn’t glamorous by any means, it is my life and the only one I get. I fully intend on doing everything in my power to live life to the fullest.


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What It All Comes Down To

There are some days where I just feel plain ‘ole lousy. Okay, you caught me, there are a lot of days where I feel lousy. Typically those days are always one after the next and slowly make a larger chunk of time until I decide that I’ve had enough and it’s time for antibiotics again.
Every once in a while, I’ll be feeling good, and I’ll have an out-of-the-blue lousy day. That’s today. This past week, while I have been coughing a lot, I’ve been feeling pretty good! Emmie and I took a morning zoo trip because the weather was too beautiful not to. Our original plans were to go run some errands like picking up milk and dog food– to which I promptly said,”screw it,” and put the stroller in the car and we went to the zoo instead. I have zero regrets.

The day was perfect for the zoo. Clear skies, sunshine and an amiable 70 degrees. Animals were out and about, grazing & roaming, while my little lady ran to her hearts content stopping to point out any animal she deemed worthy.
After a few hours we headed home for a late lunch and even later nap. But as we trudge up the path away from the animals closer to the gate I could feel it. I could feel my body using up the last bit of energy I had stored up. And just like that all my spoons were gone.

Some days it can be frustrating, especially days where you have a plan. Mais, c’est la vie, non? I’m getting better about just going with it. Today I’m being gentle with myself. The dishes can stay where they are, the laundry can wait, and I’ll push this night’s meal plan to tomorrow. No biggie. For now, while my tuckered out adventurer is sleeping, I’m resting hoping to restore a few spoons. When the toddler tornado wakes up I’ll take it from there and hope that the next few hours pass quickly.

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Snoozing & Snuggles

We have come down with our first cold of the season. A little hoarse, a runny nose, and the saddest little cough you ever did hear, which ends in the softest little cry. Actually, let me back up. I don’t think we all have a cold. Emerson caught a virus and now has croup – as self-diagnosed by me.
Yesterday’s weather fit our moods perfectly: rainy, grey & moody. We hunkered down inside while we sipped juice, watched Peppa Pig, and had a mess of a time cuddling. Have you ever had a snotty toddler demand you give her a kiss? Ummm… thanks, but no thanks?
Anyway, today you can find us cuddling on the couch, sitting in a steamy bathroom or quietly reading our books while our bodies fight to get back in tip top shape. The hubster is also feeling a little under the weather, and me? Well, I’ve been so incredibly congested anyway that I honestly can’t even tell if I’m sick with a cold or not. *shrug* I’m just gonna keep on chuggin’ along.

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