No doubt in my mind I’m the luckiest man in the world. I believe it. However, nothing rips my luck from me, rolls it up into a little ball and lights it on fire in front of my face like a CF clinic appointment with low PFTs.
I can eat a steak dinner in front of the TV while an open-heart surgery is on, which grosses my wife out. However, there is something really creepy about looking at this plastic head model with half its skull and face missing. Me no likely. Bad dreams for me and my imaginary friends now. Creative Commons.
Kick me in the groin, stomp on my back, rub my face in the dirt, piss on me like a dog, CF
Yes, after finishing IVs a mere 6 weeks ago and much improved PFTs in the hospital during the IVs, my PFTs were way down. Arghhhhhhhhh, someone stick a Drano IV in my neck and end this misery.
It doesn’t make sense – both my doctor and I thought this at the same time when light-bulbs appeared over our heads.
Then we talked about the problems I’m having with allergies and my sinuses. He thinks the post-nasal drip is draining into my lungs at night. And he heard wheezing in my right lung, which is the side I sleep on at an raised angle.
Then after a look at last year’s CT scan of my head, which showed dozens of loose screws, broken glass, two fat gerbils smoking cigarettes next to a rusty training wheel, rocks of all colors, shapes and sizes, and McGriddle-shaped clouds, he told me it was time for sinus surgery.
And like a good coach, he told me to hit the saline rinses and dual nasal sprays.
And, as a bonus, I got an Rx for oral steroids for only the third time in my life. Now, the three readers of my blog may remember that when they gave them to me in the hospital in 2010, I experienced hallucinations.
Oh, happy days, more imaginary friends to meet the imaginary friends I already have when I’m not downing prednisone.
It’s about to be party time in my head. See you there.
Yours truly,
Still the luckiest man in the world
The Unknown Cystic 
You should look into getting a nasal neb from ASL pharmacy. They are based in Camarillo. dude… you’ve only been on steroids 3 times?!?! I was on them for 10 years straight! Just finished a two week course… that stuff is ridic…
Stina,
I can’t do one more neb. I’m doing them all day. It’s time to drill. But I appreciate the tip all the same. It was very nice of you to tell me.
Can’t believe you’re still sane after 10 years of roids. But you do have Michael Bubble locked in your closet, don’t you?
UC
what makes you think I’m sane….? PS — now Michael Buble has a friend hanging with him in the closet. Jon Hamm…
I don’t have imaginary friends, but I do have a pain in the ass committee weighing in at every second. Can you invite them to your party so they can learn to relax and have a good time? They are so critical!
While not arguing with the committee, I’m holding good thoughts that your PFT’s come up. Way up.
Margie,
Thank for the good thoughts. I’ll take them.
UC
Sorry to hear about the sinus surgery, they are no fun. I have had 6 surgerys and the surgen who did the last 3 operations is in San Diego. His name is Dr. Antony Magit, he is the best surgen I have seen. Very little pain post surgery, he only works on kids and adults with CF. If I was in LA I would take the trip to San Diego to see him.
Colin
PS I have stayed out of the hospital and off IVs since Thanksgiving, one of the longest runs in 6-8 years. Lots of exercise, lots of good food, and lots of 7%HTS and Tobi.
My son had oral steroids a number of
times and had terrible nightmares with them. He would wake up screaming and when I went in to see him he wouldn’t recognize me and would a
act like I was trying to murder him.
Not a mothers finest hour…. It helps to get a little perspective from an adult who can say the word “hallucinations.” He did mention spiders all over the room once. I can’t imagine how that feels to believe something is there that is so terrifying.
I hope that this time has not been so rough on you. How are you?
Luck has not been on your side so much with the ‘staying healthy’ stuff, but it has in so much as you are here, and recovering every. single. time, you sound as if you have a phenomenal family, your humor is always with you, you have incredibly good looking and charming blog followers, and live in an awesome neighborhood… oh wait, the neighborhood sucks. (you can’t win them all, you know.)
Keep fighting the good fight, after all, what will I do with all my spare time if you aren’t around to entertain me? That’s right, it’s all about me in the end, it always is, just ask my husband… 😉
Stay well!
Oh, man! Since it’s been a week since you posted I take it you’re in your imaginary world and doubling your intake of McGriddles. Hoping the steroids and the surgery bump up the PFTs. Let us know how you’re doing.