It’s a skill to open a box and bottle of baby aspirin in Rite Aid while you’re having a panic attack, can’t breathe, are bloated from eating 11 plates, or over 22 pieces, of $2 sushi for dinner followed by Baskin-Robbins Watermelon sorbet on a sugar cone, sport an irregular heartbeat, have a blood pressure reading of 150/99 measured on Rite Aid’s free blood-pressure measurement device, and have the strong feeling you’re going to fall into the pharmacy shelves dead, shitting your pants right next to the boxed enemas.
Ironic, it’s the best way to die.
I chewed one pill, then another, and one more for good measure, making sure I didn’t take too many and cause other problems, like coughing up blood, or a another nosebleed from hell.
I walked in measured steps to the Rite Aid cashier and presented her with a mangled box of generic baby aspirin. She didn’t skip a beat scanning the bar code, and I wondered if I was the only one to ever hand her medicine that looked like a bear had opened it.
“Would you like your receipt?”
“Sure. Thanks,” I said, suppressing the urge to ask, in my calmest and most relaxed, “hey, life is grand, and sorry to bother you with this,” voice, “but can you tell me where the nearest hospital is?”
I left with aspirin and receipt in hand and climbed the sloped parking lot, careful not to raise my heart rate and feel more out of breath. At the car, I opened the cap of my personal pill bottle and removed an anti-anxiety pill, Ativan, which is the smallest pill I’ve ever seen, and exactly the opposite size you want to be finger-wrestling with when your hands are shaking. Could the makers add some bulk to it, please? Handlebars? Make it stick to the skin? Something to reduce the stress of thinking you’re going to drop it and watch it roll down the slope of the Rite Aid parking lot, under a car, and into a tar pit of oil slime.
And what choice would there be but to go face-down on the black top, stretch for it, and flick it out, hoping the owner of the car didn’t show up and run you over, or wasn’t a card-carrying member of the Rancho Cucamonga mafia with a fear of people planting a bomb under his car.
But that didn’t happen.
I held onto the pill and swallowed it with a bottle of water that had been rolling around my car for a couple of months, as I forgot to buy one in Rite Aid and didn’t want to walk back. And who knows what I put in my body from drinking hot water filled with leaching plastic chemicals. I’m thinking it will be years before it catches up with me, and odds are that something else will take me out sooner anyway.
While waiting for the tiny pill of happiness and good times to kick in, and hoping my heartbeat didn’t go into A Fib, which I hate, I had the usual internal debate that comes with my panic attacks: To E.R. it or not?
That is always the question, and the answer is always a trip to the E.R., where I calm down and leave with instructions to follow up with my personal physician. But this episode was different, as the CF team had prescribed two weeks of my arch nemesis: Prednisone.
No drug hurts me like this tiny little fucker. It’s the wicked witch to the anxiety med’s tinier good witch. It raises my blood pressure, makes me nervous, delivers hallucinations, and, during tapering, makes me angry like the Hulk, but red, not green.
I waited in the car, then out of the car, then in the car, out, in, out, for the anxiety med to switch on.
Should I try to drive the 70+ miles home? What if I am having a heart attack? Would I die driving?
I practiced my relaxation exercise of taking a deep breath in through my nose while pushing out my already bloated-stomach filled with $2 fish and rice, lots of $2 fish and rice, and blowing out slowly by pulling my stomach in, not the most comfortable process.
And I repeated my usual mantra: I am such an idiot. I hate cystic fibrosis. Breathe. I am such an idiot. I hate cystic fibrosis. Breathe.
And I waited.
*****
My work week started at 7:00 a.m. Monday morning and didn’t end until late Friday night, which I don’t think gives away the ending that I lived. At most I found time to eat and sleep during the week, but the rest was work or thinking about the time-sensitive, large-budget “so everyone has an opinion” project at work. And the pace was intense and filled with barbed wire to climb over.
And then I took a crash course in Bronchospasms 101 and wished that I had purchased my new FEV1/FEV6 meter years ago. At least I had it now and was able to track the TOBI Podhaler shooting down my lung function and oxygen saturation days before a meeting in Rancho.
Ah, more CF cruelty: new med, lower lung function. Are you kidding me? Really?
After numerous emails and conversations with the CF Team (a great group of caring people), I killed the Podhaler and replaced it with the drug created by the devil himself, Prednisone.
For the first time in seven or eight years, I dropped all antibiotics – nothing or nada in my mouth or veins with “mycin” in the name.
Cold turkey, baby. Where’s my one hour chip?
So, with my FEV1/FEV6 way down, I replaced antibiotics with steroids. Again, are you kidding me? Who thought up this cruel joke?
But once again life proves why a valid medical degree trumps an Internet research certificate: my doctor was right and my lung function started going up once I dropped the Podhaler and swallowed the steroid. But that didn’t keep me out of the Rite Aid Parking lot.
****
I took a risk sitting there in that parking lot and drove home with my pants unbuckled to make room for my whale belly and my “on the go” breathing exercises. I didn’t care if I lived or died. I just didn’t want to go to ER again. Couldn’t do it. No way. I hate the process too much to endure it. The hours of waiting. The questions. The strange looks. The “you have CF?” comments, followed by something like, “but you look healthy.”
When I got home, I didn’t tell my wife what had happened. I stripped off my office work clothes and put on my work-from-home work clothes. I gathered my breathing treatments, stepped on my treadmill desk , fired it up, and went back to work.
And tomorrow came, again.
The Unknown Cystic 
(Nsfw, or kids). Sometimes, your honesty fucking kills me.
But I am so glad that someone isn’t bullshitting.
Amy,
I’m not the poster boy for honesty, especially thanks to my early years, but on this post I made a great effort to be accurate with the details. So, I really appreciate your comment and am really glad you took the time to leave it.
UC
Oh, UC, what a seriously sucky episode… I’m glad it seems you have pulled through with no major consequences. I am currently on prednisone, too, for a totally un-CF-related (I think) issue (random swelling after a benzocaine injection the dermatologist used to remove a suspicious mole from my arm). It makes me feel a bit manic (but on the bright side, my kitchen is sparkling!) and my heartbeat seem fluttery. I’ve got about 3 days of patience for taking it, but man, it does good things for my lungs! Sorry to hear the podhaler gave you so much trouble. I’ve been doing it for 3 weeks now and while my technique is improving, there are still one or two inhalations a day that make me feel like I’m breathing in poison gas. But I somehow manage to avoid it most of the time, so maybe there is some random, special technique for it? I admire that you pay such close attention to your symptoms and that you’re willing to consider and give equal weight to the fact that they may all not be due to CF. You are a good role mode for me about how as CF patients age we can’t just pretend the universe would only ever give us ONE medical thing to worry about. Keep fighting, keep blogging, and keep treadmill desking.
Dr. Nanos,
Yes, I read about what happened with your arm on your blog, which sometimes allows my comments.
If I had a list of top five mistakes I’ve made with CF, thinking everything is caused by CF would make that list. Like my poor digestion of wheat, which took forever to diagnose and caused me mucho doctor’s visits and suffering.
I am so upset by the fail of the Podhaler. It’s an amazing design. No neb to boil. Quick. ARGGGGHHHHHH.
I am only a role model for you if you look at me as the “what not to do in life” example. I pay way too much attention to my symptoms. I’m like a high-strung Labrador, noticing everything and eventually going crazy chasing its tail.
The Universe sucks for creating CF.
I love my treadmill desk. It’s better than I ever expected. You have to get one. Nothing like pouring dangerous scientific chemicals together while walking on a moving belt. You’ll be famous and in all the scientific journals.
You’re the best.
UC
My dear and sole loyal reader,
I’m sorry tumblr is so weird with your comments. I always enjoy them when they come through. Unfortunately, I like the tumblr community too much to swap over to wordpress, so I suppose I’ll live with the sparse availability of your feedback.
I’d love a treadmill desk, except for the following obstacles:
1) I work for the State and I’m not sure if they’d be too keen on buying one for me or allowing me to retrofit my slightly-larger-than-a-cubical office with one, although it sounds awesome and healthy.
2) I have Old Lady Back, which has caused my “retirement” from running about 2.5 years ago. It feels much better in the last year and I can bike with no problems at all. In the last 6 months, I’ve progressed to no issues hiking or walking around while playing Frisbee golf. However, I hesitate to do too much too soon (as I was reminded of when reading your treadmill desk day 2 post). I DID start doing the sissy, swishy, pretty much zero impact elliptical trainer two weeks ago and that has caused no back issues and seems like might be a good thing to do on the blistering hot Texas days where I don’t want to ride my bike. Perhaps in 12 months I’ll be ready for all day treadmill walking?
3) You’re right that I do not have a sitting desk job. I am doing lab stuff, but thankfully have made what I consider the good choice of it being non-chemical oriented. It’s mostly sitting with students at computer work stations teaching them how to make the fancy science machines go. Now if I had a portable treadmill desk I could wheel in with me to each work station, that would be excellent.
Take care and I hope you have reduced stress, anxiety, and steroid side effects. I’m very tired of the sweaty, sleepless nights, the munchies, the 3 pounds I’ve gained in 5 days of prednisone, and my utter lack of Hulk-like strength.
Nanos
Ugh, sounds like you and a week straight from hell, capped with a doozy of a day. I am thinking, ‘wait, you drove 70 miles just to go to Riteaid?’ 😉 And then, don’t you just hate the comment, ‘but you don’t look sick!’ Just let them walk one day in our shoes and get back to me. Hope you feel better as you come down off the good old steroids.
Hello, my hospital buddy,
Yes, week from hell. Night from the deepest hell. Sounds scary.
I do hate the comment about not looking sick. It drives mad. I guess all doctors look for a sick look first.
Most people could not handle our shoes. It would be too much for them. Hell, my own shoes are too much for me.
I hope you’re doing well.
UC
John,
That really sucks. Hoping this week is much better and the prednisone didn’t make you into too much of a wild and crazy guy and has you back on your feet. One day at a time and one foot in front of the other like the treadmill.
Larry,
A double header of comments on the night our NL gets shut out. No homefield for the Dodgers when they get to the series this year.
Thanks for the good wishes. Appreciate it.
UC
Fuck…….
Its been a few years since I was last on that shit. I know how you feel. Its shitty. Glad you were able to get through the panic attack. I’m still feeling out the podhaler to see if it is gonna work for me. Godspeed good sir.
Colin,
What’s not to like about a comment that starts like yours did. Nice.
I hope the Podhaler works for you. Despite looking like a feminine hygiene product, it’s so easy to use, quick, no boiling. Please, Universe, let it work for you and everyone else. Do you have an FEV1/6 meter? It’s good to have and not too expensive.
Godspeed to you too.
UC
Dear Madman of LAShire,
Never listen to one of my recommendations again! I can’t believe the Podhaler has done a number on your lungs. All that time of hyping it up and saying it’s the best thing since sliced bread, I feel like I’ve stitched you up like a kipper!
Sean
(I am no longer worthy of the Sir)
Sir Sean,
You’ll always be a “sir” to me. I’m glad you recommended the podhaler. It’s not your fault it made my lungs go haywire. Maybe I should have tried inhaling sliced bread. It might have been better for me.
UC