My solar face and the quest for rock-hard buns

My arms are covered in tape residue, and scabbed with sealed IV marks and needle pin-holes. Blown veins spark when bumped. My back aches. I ache. A constant wheeze vibrates my right lung.

A crescent moon scab has formed on my forearm where I tore a piece of tape off and took too many layers of skin. Empty Arrowhead water bottles litter my room. Blue gloves I was too lazy to walk to the trash can decorate the floor.

I throw a lot of stuff on the floor. Its easier than doing the IV ballet dance across the room, twisting, turning, cord, IV line tug, and back again.

I spend a lot of time looking at the floor. All the nurses wear Sketchers tush-toning shoes, though none will admit they work when I ask them if they do. “My posture is better.” “My feet are less tired.” I am looking for the first honest nurse to say, “my ass is moon-round, rock-hard now. Feel.” And I will.

After 9 days of fevers, I have a bad attitude.

My PFTs were down 30 to 40 percent today, depending on the number.

My face burns like the sun. The nurses use it to tan their faces. It only takes 30 seconds for a Saint-Tropez bronze to die for. Googling “burning face” and “fire face” yield all the wrong information, and are useless for an accurate diagnosis.

I have avoided peak flow devices in the hospital because I have always said they was worthless, and dangerous, for CF. The peak flow showed a 10 percent drop. I told them it was more. I was right, though I wish I had been wrong. Tomorrow, I may shove a peak flow meter down a doctor’s throat, or up his ass, whichever he prefers. Peak flow this.

After 9 days of fevers, my “blacks crackle and drag,” which is still my favorite line of poetry ever, thanks to Sylvia Plath.

I find it amazing how life can be moving along, I can be working hard to stay healthy, and one virus derails it all. My life is made of beach sand.

I tell my daughter, life isn’t fair. Don’t ever think it is. And don’t worry that it’s not. You’ll be happier. But some days, I wish it was and CF didn’t exist.

(Here’s a photo of my makeshift cooler-seat dining area. Now all I need is a camping tent to complete the look.)


4 thoughts on “My solar face and the quest for rock-hard buns

  1. Peak Flow meters are bad. At my hospital, at least after tx, they do not use them because people injure their airways just trying to prove that their numbers are better- especially you with the bleeding- tell them you read a study about bleeding, pnuemos and peak flows inpatient, and tell them to f off 🙂

  2. It’s time for that fever to break!! I’m amazed you’re writing complete sentences.

    Off topic: what is that metal thingy under your table?

    Hoping you feel much improved tomorrow!

    • Mal,

      I write between the fevers. The fevers put me down. I’ve had numerous conversations with the doctor while I was face down on the bed.

      The metal thing is an exercise bike that is really boring to use and bumps up and down on the ground if you pedal too fast.

      Thanks for writing.


  3. I was thinking the same thing as MiddleAgedLady… please enlighten us. On the brighter side, I think a tent would like fabulous in the hospital room. Very eco-medicinal look.

    So I saw a link on Stacey’s facebook page to this hilarious link that I had to share with you. I was laughing so hard I was crying. It could me that I’m just in a funky laughing mood tonight, which has been known to happen, but in case you find them funny too, thought you could use a smile. 😉

    I mean, COME ON, UC… how can this NOT make you want to join facebook!?!?

    Let me know if you see a nurse’s rear that is a good testament to those shoes… us women will try anything for a firmer tush.

    CF wife

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