What CFers Do — Page 2

Open Talk: Most Embarrassing Coughing Fits

May 22, 2011

This entry is part 16 of 19 in the series What CFers Do

Today was the coughing fit of all fits: publicly. I didn’t even have the “luxury” of having this grand mal fit at someone else’s house. It happened at church, thankfully after the service and while waiting for a meeting to start. Here’s what happened.

My best friend’s dad came over with his camera for us to take to California with us, so I was sitting there opening the case with Beautiful to my left, my mom-in-law in front facing us, and my bro-in-law and his girlfriend on my right. There was a note on the camera that said he’d switched the camera out of shooting in RAW format, so I was going into the menu to do that immediately. I didn’t remember it until later, but Mom2 was telling me about the photos on the server for me to look at and we were in the middle of a conversation about photos for the new website.

Then I had one of my coughs that sends the world black, my tongue numb, and everything goes away. Everything.

It came on without warning, no pre-coughing or anything. Blackness.

The next thing I knew, Jose, one of the elders and a family practice doctor, was over my right shoulder, Beautiful was back on my left, and Mom2 was having a clear freak-out along with her about what just happened. What did just happen? “You dropped the camera on the lens,” they said. “You weren’t answering us and you were shaking like you were having a seizure.”

“Okay, answer me this, what is her name?” Jose asked me pointing at Mom2 after I insisted that I was alright, though I freely admitted to flat-out blacking out. “Mary-Lynn,” I replied. “OK, he isn’t disoriented, which is one of the main symptoms after a seizure. Can you walk to the kitchen with me so I can test your gait? A lot of people behind you are concerned for you and I just want to be sure you are really okay.”

I have rarely ever been that embarrassed in my life. Certainly never at my home church where I’ve been since I was 16 and most people know I have CF. At that point, I still didn’t know what had happened other than blacking out and dropping the camera. “It’s not like I fell,” was all I was thinking until we started for the kitchen and then I started thinking, “what did they see? Why is that person smiling at me now?”

I’ve never felt so at the mercy of my damaged body before in my life. I had lost complete control of everything, making me extremely glad I didn’t have to go to the bathroom at the time.

In the kitchen, he took my pulse and blood pressure. Both were elevated, but within reason for such a coughing spasm. He would have been concerned if I had lower blood pressure. His O2 meter hadn’t come to life because it was too hot from being in the car, but since I was carrying on conversation fine, he let it be.

What really happened

So on the way home, Beautiful told me what I did. We were talking and I started coughing, but really badly. She was shaking my shoulder asking me if I was okay, but I didn’t respond. She shook harder and yelled louder. Still no response. That’s when the freak-outs began because people look to her to know if things are OK. Things were not OK. She got up to go get Jose, and the others rushed with her. They were only gone 10 seconds, but I’d gone into a slouch back with my head looking up and my tongue out and my arms down at my sides in stiff-fashion, still coughing hard and my whole body was shaking.

Then it was over.

I hope that never happens again. Ever.

Has anything like that ever happened to you?

Cystic Fibrosis – the Financial Deal

April 23, 2011

I was sitting at my desk on the Interwebs minding my own business when Jessica Link (@chronicuriosity) asked me a relevant question and made me go and think about my life some more. 😉 Good job, Jessica. She was in grad school until she got a job, is well-motivated, has no debt, and no long-term relationship prospects for married insurance, and, of course, CF. I think that’ about covers her situation, with the question of how to budget for unexpected medical expenses, plan for retirement, and generally how I got by single. I hope this answers a lot of questions about finances while dealing with CF. If I missed something or glossed over something too much, please let me know.

Let’s dive in

Well, we can get that last one out of the way rather quickly. I was a miserable financial failure as a single. I didn’t get my act together until a few months before we got married, and even then, it took a lot of adjustment to kick my old habits and submit to the realization that the situation needed my full attention. We still owed some credit card money from my past stupidity and I still owed on my used car, but we knocked out that car within 5 months and freed up a couple of hundred a month for some breathing room.

We have learned quite a few principles along the way and, while we aren’t rolling in money, we aren’t lacking anything. The rules for finances are the same, only modified to prepare us for bigger hits. We’ve both been through a finance class that helped us budget some, but not completely. I’ve been listening to Dave Ramsey podcasts (his books are excellent for all) for over a year now and have heard the principles played out enough with both the trauma of being risky or foolish and the cheers of successfully managing money. I’ve been saddened and immensely motivated by the callers and now even more motivated by watching the show “The Secret Millionaire.” I wrote about that effect on me here.

[Read more…]

What CFers Do: Wait for Antibiotics

March 14, 2011

This entry is part 15 of 19 in the series What CFers Do

Two Fridays ago at my ENT visit, he faxed an order for vancomycin for me to start using with my PARI Sinus nebulizer to vibrate around up in my sinuses to see if that melts away the green monster that is living in my head.

I’m still waiting for said antibiotics.

By Wednesday morning, I called to see when I could expect the shipment, and they said that shipment wasn’t scheduled, so I said I’d like it by Friday. Thursday, I got a call from them saying that my insurance would only let one specialty pharmacy send it to me: their own pharmacy. I waited for that call for delivery. Friday, I called them. They didn’t have the order ready because it took him 5 minutes of me listening to him breathe like a prank call pervert to find the fax from the other pharmacy to tell me that they would have to get approval from the insurance to be able to schedule delivery.

Today… I’m not holding my breath. I’ll be calling them at 2pm – after the lunch rush – to poke them with a cattle prod.

What CFers Do: Throw Free Drugs Around at Church

October 25, 2010

This entry is part 14 of 19 in the series What CFers Do

Singing this Sunday got my sinuses literally abuzz and triggered a Montezuma’s frontal sinus headache by the time we were done with 3 songs. When the 4th and final song was over, the only thing on my mind was to crack open my pill bottle and extract one of my two Vicodin ES pills to find sweet relief. Things didn’t go as planned. Follow along and laugh at my folly and feel free to share your most embarrassing pill story in the comments. I won’t make fun of you… too badly.

Here’s what happened:

I got a Nalgene bottle for my college graduation, so I like to bring that to chug on my sweet tea or Gatorade to keep hydrated and avoid any coughing fits that can occur in any 75 minute span. Using an order of events that I’d like to have a mulligan for, I placed the (closed) bottle on my right leg, propped up by my left foot, which was crossed over my right knee. As I popped the cap off my pill bottle, the Nalgene bottle started to slip off to the right to come crashing down.

Pause.

My pill bottle is a regular, small pharmacy bottle filled with about 20-25 Zenpep, 10 Xanax, 1 Soma, and 2 Vicodin – yes, well over 30 pills.

Unpause.

As the Nalgene started to go, my cobra-like reflexes sent my right hand over to block its decent to earth. Unfortunately, that was also the hand that was holding my now open pill bottle. I saw a slow-motion director’s cut of all of my pills flying out as if they were buck shot from a 12-gauge, flying toward our youth minister and a Sunday school teacher a full 10 feet away on the other side of the isle.

This wouldn’t have been too terrible, except the pastor had just started his intro and he had a clear line of sight at my blunder, and at least half of the pills ended up under said people’s seats… so there we were, me and my bro-in-law’s girlfriend on our knees scooping them up as fast as we could and the other two guys leaned over picking them up from under their seats. Without calling HazMat, we got them all back in my bottle and got seated again. About 30 seconds later, another Xanax was discovered and returned to me.

I was sooo red that I could feel my heartbeat in my cheeks and forehead. If I didn’t need the Vicodin so badly, I would have switched plans and popped a Xanax instead.

So, remember, kids. Don’t do drugs at church… at least after the sermon starts.