It’s easy to explain the horrors of hospital stays to friends. Most have had some experience with them and have a respectful fear of their many needles and tests and food fit for no one. But I have a harder time explaining the daily grind of treatments, boiling nebs, dealing with insurance and holding the door closed on the dark and hopeless thoughts banging away, trying to get in. If CF were only having to deal with hospitalizations, I’d feel like a king. How nice would that be not having to deal with the everyday routine of the disease. Even the constant drone of the compressor and neb hiss eats at me. Three times a day. It’s confining and the same, like wearing wearing a plaid three-piece suit everyday. I long for new drugs and inhalers just to break up the routine.
Here’s a rough sketch of the daily inhaled gears turning:
Morning: Wake up. Inhale Xopenex, two hypertonic salines and inhaled antibiotic.
Afternoon: Inhale Xopenex and two hypertonic salines (and inhaled antibiotic if a Cayston month).
Evening: Xopenex, two hypertonic salines. Pulmozyme. Inhaled antibiotic.
Now repeat this 365 days a year, add mustard, onions and jump out the window.
That’s the skeleton of my day of breathing treatments, which also includes Vest time and a myriad of other drugs at set times. It would be even worse if I was forced to eat hospital food every day – the same meal for breakfast, lunch and dinner. (McGriddles for breakfast don’t count, @Seanset. They’re special) Something tells me there’s an Edgar Allan Poe story here about daily CF treatments causing madness. For madness doesn’t feel far away at times.
Knock, knock, who’s there? CF you. “CF you” who? CF you go crazy from doing inhaled treatments three times a day.
I’m not sure there’s a way to describe the daily grind to others. They’d need to experience it for themselves to understand and appreciate it. I’d like to see how long non-CFers could go, how many days in a row they could fire up the compressor, stick a neb in their mouth and inhale for an hour at a time, three times a day, seven days a week. I can only imagine they’d crack after three or four days and beg to stop and return to their normal, treatment-free lives, especially during the late-night treatments when sleep sounds good but must be resisted. (I have miles to go before I sleep. I must fight the urge to crash and skip a treatment. I’m being tested. Must fight on. Must fight on. One more treatment. And another. And three tomorrow. AAAAAARRRRRRRRRRRRGGGGGGGGGGGGHHHHHHHHHHH!)
Knock, knock. Who’s there? One day. “One day” who? One day I’m going to drag cystic fibrosis behind my VW van from L.A. to New York. That’s who.
I would like to join you on your road trip dragging CF screaming & shouting all the way, and we will eat McGriddle’s everyday! And play some of @onlyz’s excellent tunes. 🙂
Tune that sounds like a pretty good plan. Okay, you can come on the road trip with me. You can ride shotgun. We will eat like Kings. We’ll invite @onlyz, too.
❤ 🙂 —"—<@
much love, smiles and flowers your way to LA. I would like to come too, maybe you could pick me up on your cross country trek…..i could bring the zydeco 😉 much love ~j
Awesome. You’re absolutely invited to come with me and @seanset. You have an official place in the “drag CF across America” tour – the most gruesome fundraising tour ever. Party with a capital P.
I couldn’t have written it better myself. Love the post – so very true.
You need to get well and back to shopping and school.
No one can do it like we can do it. I even gave in last night. I didn’t have it in me to get my carcass up off the floor from watching TV to go into the kitchen to get my stuff and sit on the couch, knowing it’d send me into a slumber until 2:30am and gunk up my eFlow heads by not rinsing them right away. I think my lungs are more durable than those darn heads are now that I’m running.
Hey, man. E-mail me… I didn’t know you were on Cayston. I have a proposition for you that doesn’t include a cheap hotel room in a seedy part of town.
You gotta get that stuff out of there before bed. That’s probably why you’re paying the price this morning. My eFlow heads last a long time as long as I rinse them and leave them in alcohol the rest of the time. Has your doc approved this running plan of yours? Read about the blood the other day.
I tested Cayston for over two years. We go way back.
I’m still big on the knock knock joke I told on twitter.
CF who can Suck It.
I love this knock, knock joke. Where have I heard “suck it” before? Let me think . . . thinking . . . oh, yeah, from you. It’s time for you to get a pink shirt with “suck it” on the front. Let’s see that on your blog. I double dare you.
Fave line of this post
What? Which line? You’re being very mysterious today, Trickster.