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What CFers Do: Mail Bills to Medical Places

This entry is part 9 of 19 in the series What CFers Do

Bills to payBeautiful finished doing the bills Sunday evening and put them on the kitchen counter for mailing tomorrow. She started laughing as she flipped through the pile a little while later, noting that they were all for medical bills that were still too “dark ages” to let us pay online like every other bill we have.

“That’s what CFers do,” I said. “I guess I have my post for tomorrow now. Thanks!”

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Forget to Take Their Enzymes

This entry is part 7 of 19 in the series What CFers Do

Huh?Enzyme Amnesia: When you’re chowing down on your food and you can’t remember to save your life if you already took your enzymes. The glass isn’t an indicator, because you didn’t drink milk tonight and you’re OCD about putting the enzymes back in the same spot on the table, so that’s no help either.

If you’re like me (a life-long recovering meconium ileus patient {see scar here}), skipping enzymes leads to a very bad situation in about 24 hours if you neglected to partake from the enzyme buffet: an intestinal blockage that usually requires professional intervention. For me, I now have it down to an exact science.

The symptoms and steps to recovery

  • If I feel intestinal aches, I think back to exactly 24 hour prior and what I had to eat. Did it include a lot of cheese or even a little melted cheese?
  • I stop eating at this point if the answer is “yes” and try to drink more than usual, while being conscious of whether I still feel full a long time after a big drink.
  • I wait 4-12 hours to see if the aches turn to cramps and if the cramps do the job of clearing out the blockage on its own – that has only happened 4 times in my life.
  • When the cramps turn into grand-mal “oh, I’m going to kill someone if I don’t get immediate help” pains, we go to the ER and I have them pull my history of obstructions. I point out how the symptoms, treatments, and results are all the same in the end and they should just do as I say and get me out faster.

I’ve noticed that ER doctors and nurses don’t like being the ones who don’t know exactly what is going on with my body, even though I do, so they are often reluctant to do what I ask without anywhere from one to four tests first. Thankfully, they are always quick to provide morphine (even before IV fluids when my port is already accessed, if you can believe that). Sometimes, they “comply” and simply do an x-ray and then take my suggestion for treatment since it’s relatively non-invasive and HAS to be cheaper than their alternative tests, which can include hours’ long waits for a contrast CT scan.

What works for Fatboy?

Stop reading now if you don’t want to know what cleans out my pipes and how they get there.
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Blog About Living With Cystic Fibrosis

This entry is part 5 of 19 in the series What CFers Do

Mac KeyboardI’ve been blogging since October 2005. It all started innocently enough: a daily diary of my gameplay time in the online game, World of Warcraft. My memory is so terrible, I thought it would be neat to create a daily account of my time in the game, and ended up creating a whole persona and eventually a following of fans that would follow me from game server to game server as they filled up and got too slow to enjoy playing on. It was an incredible sense of “someone cares about what I’m writing about.”

Traffic got up to over 1,300 unique visitors per day and I was raking in the money with link ads and affiliate sales. Those were the golden years of my blogging life. It’s stalled at 801 posts, even though I still play a few hours per week to relax – I just haven’t taken the time to continue posting my exploits. Financially, I should… those were good days. 😉

Time for a personal site – how about talking about CF?

In May of 2007, while leaving for Chicago for my first blogging conference, SOBCon (no, not that kind of SOB – Successful Online Bloggers), I got onto my host and created my personal blog so I could talk about something other than my digital persona without being weird. It turns out that most of my regular readers actually cared about the person between the chair and keyboard, but it looked strange to me to have a story about Beautiful freaking out about a spider on a site dedicated to a game. It was time to have a personal site. I just wanted to have a place to post everything about my first trip to Chicago for a cool geek conference. A WoW blog was no place to house that sort of content.

Yet cystic fibrosis hardly ever came up. I just did a search of the 445 posts on my personal site, and the phrase “cystic fibrosis” only comes up 13 times in 3 years. I clearly didn’t want to talk about it.

Writing brings validation and reality to a topic

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Try to Swallow Chewable Vitamins

This entry is part 3 of 19 in the series What CFers Do

Vitamins!Have you ever had a horsepill that just refused to go down? I had a terrible week where I was trying everything I could to take my 4 normal pills, but two of them kept dissolving into this terrible mess that I ended up spitting out these shriveled carcasses after 5 attempts.

You guessed it from the title: they were chewables. Since we get whatever ADEKs my specialty pharmacy has on hand, they have a tendency to change brands every now and then. For now, they are nearly black gel caps that are a little larger than my enzymes. In the case of the chewables, they didn’t look much different than the calcium I was taking in the same mouth full… only the calcium actually went down while the ADEK stuck to my tongue like white on rice.

Thanks for letting me know ahead of time, Beautiful, instead of laughing about it after a few days. I think she claims innocence, but I wonder… she is a sneaky woman, that babe of mine. I am too fun to resist picking on, as she says.

So, remember, kids. Check the bottle (or with your spouse) to find out if you are supposed to chew or swallow.