Changing the standard of thinking.

Bloating and a General Feeling of Discomfort

Fat Ash Ketchum by ~Ranguru

Fat Ash Ketchum by ~Ranguru

I’ll do my best to not be graphic or disgusting for this article, but I’m afraid that’s not really going to be possible. If you don’t like fart jokes, or are generally turned off by anything related to bodily functions, stop now. This is cystic fibrosis. This is real life. /end warning

I’m getting much better at not being gross since meeting/dating/marrying Beautiful, but cystic fibrosis is a disgusting disease, is it not? I have a feeling that one of the reasons I didn’t have as many friends as I should have in elementary school was my problem with my intestinal gas. This came as a huge shock to Beautiful when I told her, but I remember being in the 6th grade when I first discovered that you could hold back a fart. That must not have been conducive to making or keeping friends when we all had to sit together in little table groups of 4-6 students. I can just imagine the thought bubbles of 20 years ago: “I don’t want to get in Jesse’s table group for the next 12 weeks. He smells bad!”

I really had no idea before then, and even if I did, I honestly don’t know what I would have been allowed to do about it.

For those without CF, all I can say is that the pressure is almost unimaginable, second only to a complete intestinal blockage. The increased pressure is a direct result of poor absorption of the food we eat. I am doubtful that the teachers would have been allowed to have me wandering off down the hall to the bathroom every time my pressure meter started to rise because that would be a special privilege and I would have missed countless hours of classroom instruction had I done that.

[Read more…]

100th Mark – Something Special

100th Thank YouI had an article all lined up for tonight’s midnight posting until I realized that today was a milestone: 100 articles/posts! We’ve come a long way together from me being Semi-Skinnyboy when this started in March until now.

I wanted to take a moment to thank you all for reading, subscribing, commenting, Facebook friending, and tweeting with me. Like I’ve said, before March, I didn’t even have CF, so to have so many new friends with a common “interest” is amazing. Opening this door to my life has somehow opened a door to my heart and my head at the same time.

I am in better shape than years, I’ve never looked this good before (Beautiful sort of said it, not me), and my outlook on the future has never been better. For these things that I’m grateful for, you have had a part in. You’ve kept me accountable to do what I’ve set out to do by coming back every day and checking in to see how things are. I even got e-mails when I stopped weighing myself every day to see why I’d stopped.

Over there in the sidebar, I’ve got my list of the top articles on the site. That list is generated by actual hits of the articles on the site, but I want to know:

Which is your favorite article and why?

Was it the style? How it made you feel? Did it inspire you? Did it just connect with you because you feel the same way? Lemme know, and we can have an even better next 100!

Unknown Cystic, I Mean, Fox

This entry is part [part not set] of 3 in the series Meet My Little Friend...
killer fox by ~Zoo-chan

killer fox by ~Zoo-chan

First up in my new “Meet My Little Friend” series – a series devoted to my fellow CF bloggers who have either inspired, entertained, interested, or educated me (or even two or more of them together) through their writing or photos is Unknown Cystic@UnknownCystic on Twitter because he’s taking a week off of writing, so this is a good chance for him to just link some new content over to here so his readers don’t die a slow non-reading death.

“John,” if that’s his real name according to some comments hails from the West Coast, so he gets my stuff in the evening when it posts at midnight and I read his stuff when I wake up in the morning. With the exception of a few mental oddities when a fox takes over his brain and carries on conversations with him, his medical staff, and his readers, I’d think we could pass as brothers with our attitude and situation.

He’s got wit. He’s got style. He’s got a bag over his head.

[Read more…]

My Nebulizer’s “Dirty Head” for Colistin and Hyper-Sal 7% Saline

3 headsI mentioned on Twitter or the site (I’m getting so old now, I can’t remember anything) that I was using my “dirty head” at the moment. Someone asked for clarification, so I thought it to be worthy of a post now, so I can explain how I roll with 5 treatments in a row.

Pre-requisite reading: Fatboyโ€™s Nebulizer Life

Now that you know my routine, here is the tip part of the write-up on the method I’ve learned after 4 years of having eFlows. I touched on it when talking about my 7% saline dose. Did you catch it? When I receive a new shipment of colistin, PSI is nice enough to send me a new Trio head. Getting Foundation Care to send a new head was like pulling teeth – it was every 3rd shipment and the metal disc was all bubbly and clogged by then. To say I’m happy with PSI would be a great understatement.

[Read more…]

Bloating and a General Feeling of Discomfort

I'll do my best to not be graphic or disgusting for this article, but I'm afraid that's not really going to be possible. If you don't like fart jokes, or are generally turned off by anything related to bodily functions, stop now. This is cystic … [Read more]

100th Mark – Something Special

I had an article all lined up for tonight's midnight posting until I realized that today was a milestone: 100 articles/posts! We've come a long way together from me being Semi-Skinnyboy when this started in March until now. I wanted to take a … [Read more]

Unknown Cystic, I Mean, Fox

First up in my new "Meet My Little Friend" series - a series devoted to my fellow CF bloggers who have either inspired, entertained, interested, or educated me (or even two or more of them together) through their writing or photos is Unknown Cystic - … [Read more]

My Nebulizer’s “Dirty Head” for Colistin and Hyper-Sal 7% Saline

I mentioned on Twitter or the site (I'm getting so old now, I can't remember anything) that I was using my "dirty head" at the moment. Someone asked for clarification, so I thought it to be worthy of a post now, so I can explain how I roll with 5 … [Read more]

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