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.