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Portion Sizes are a Challenge in a CF Family

It’s summer BBQ time! We have to spend a little extra time buying our grilling meats because I need to be sure that Beautiful gets a normal person portion and I get a “are you seriously going to eat all of that?” look from any number of service personnel, including wait staff at restaurants. When I was younger, they would warn my parents that something was a really big portion, to which they informed them that my nickname was “The Insinkerator” and to just bring me what I ordered.

My PlateHere is an example of a portion that I give myself in the evening. I believe I took some photos of spaghetti dinners with my phone, too – those should go at the bottom. What we have here is 1/3 of a 4-serving bag of steam-in-bag corn, a 12oz pork chop, and 3/4 of a bag of rice. If you have CF, I don’t know how you can make it without moderate culinary skills, and grilling is an essential skill to learn to get good protein in a new and palatable method after a long, cold winter. We do love our grilling recipes, and I do love my grill that Beautiful everyone pitched in and got me for my 30th birthday almost two years ago! I even got a BBQ recipe/tip hardcover book for Christmas the year I got the grill, and it’s got some good rubs in there and makes me feel grilling equipment inadequate. There sure are a lot of toys to go with my shiny grill that I don’t have yet.

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Run, Sickboy, Run – a.k.a. Ronnie & Mandi Sharpe

This entry is part 2 of 3 in the series Meet My Little Friend...

Ronnie and MandiHere is a dude who is secure in his cystic fibrosis. Ronnie was the first CF blogger – Run Sickboy Run – who Beautiful started following last year. She started so early in his writing, he was still just writing about waking up, trying to walk/run, and rinse and repeat. He’s come a long way since those early days and has literally inspired hundreds, if not thousands of CFers to take better care of themselves through his transparent writing about living life with CF.

Ronnie, this Bud’s post’s for you.

There are a few things you need to know about Ronnie:

  • he’s outgoing and open about his CF
  • he’s pretty darn healthy because he works so hard at it
  • he just got hitched to someone who, by everything I’ve read, is cut from the same cloth as my wife
  • is as driven as the day is bright in Arizona, where they live

He is an incredible promoter of CF, founding Cystic Life. Oh, you’ve heard of it? Yeah, so have over 6,000 other people at this point. He’s like a rock star or something for CFers. It’s a place for CFers to meet and greet, blog, ask questions, and more. It’s like a private Facebook for CFers and their families.

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A New Experience for Me

Tombstone Humor

Tombstone Humor by ~MikeHungerford

I half-joked a little while ago about how mad I’d be if I add someone to my blogroll and they kick off – because I don’t handle death well. I know I don’t, but the reason is a bit strange and indecipherable exactly why.

Death has surrounded me, yet evaded me my whole life. It’s been in my immediate family with my sister, but I was too young to remember. It’s been in my surrounding family, but people I wasn’t really attached to. I’ve spent countless hours in the funeral home growing up as my grandparents’ siblings passed through.

Aside from that, there have only been two people close to me who have died. One in a car accident and one after 2-3 years fighting multiple myeloma. I think the accident was harder. He was 3 years younger than me and had just gotten engaged. The memorial service was literally gut-wrenching. Our church was packed with everyone, including full fireman detail since he was a volunteer fireman. There was no preparation for his death, he was in the prime of his life in perfect condition, and then he was gone.

Now that I’ve started this site, I’ve exposed myself to a high-risk population. Death was one reason I had insulated myself from CF people. I don’t like to lose things, especially people. I find it hard to make friends, so it’s a big investment of time and emotions for me to put myself out there. [Read more…]

Unknown Cystic, I Mean, Fox

This entry is part 1 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.

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