Changing the standard of thinking.

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

This entry is part [part not set] 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.

[Read more…]

Fatboy Interviews Beautiful: A Love Story

Beautiful, simply beautiful

Beautiful, simply beautiful

It’s the time you’ve all been waiting for: Beautiful speaks! Sure, she leaves comments, which was a HUGE deal for her. This is the first site she’s ever been compelled enough by my writing to leave a comment for all to see, and now she has her own site over at kris·tin·ol·o·gy where she tends to talk about me some, too.

Here’s the format that this took place with: I wrote down a ton of questions in this as a draft and let her take her time to answer as many of them as she wanted to, and then we deleted the ones that didn’t make the cut or didn’t get answered for one reason or another. Basically, it’s a 60 Minutes interview after the producers get their hands on it, except all of her answers are in her words and in complete context. Ready?

Fatboy: Hey, Beautiful! Whatever made you want to go out with me that first time, be it that freezing Memorial Day at the beach or our first date?

Beautiful: You were interesting. We could spend forever talking about nothing. You always had such a different perspective on things than I did. I couldn’t wait to see what you thought.

Fatboy: When or how did you find out that I have cystic fibrosis?

[Read more…]

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…]

The History of Cystic Fibrosis

Dorothy Hansine Andersen

Dorothy Hansine Andersen

Because the symptoms vary and are largely hidden, cystic fibrosis was only described and suspected for the last couple of centuries without having a true diagnosis of the disease until the turn of the 20th century. Observations of scarring of the pancreas and meconium ileus came first, pathologically, but it was documented in the 1700s, “Woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die.”

Imagine having infants dying within days because their intestines are literally blown apart at birth. Toddlers who are half the normal weight or less because they aren’t absorbing their food because their pancreas isn’t providing enzymes. These are invisible problems and involve issues that aren’t even understood yet. “Failure to thrive” was often what was put on death certificates of people we can trace back as potentially having died from CF based on family history.

Based on the research milestones according to the list on the Cystic Fibrosis Foundation site, there is good reason for hope of a cure:
[Read more…]

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

Here 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, … [Read more]

Fatboy Interviews Beautiful: A Love Story

It's the time you've all been waiting for: Beautiful speaks! Sure, she leaves comments, which was a HUGE deal for her. This is the first site she's ever been compelled enough by my writing to leave a comment for all to see, and now she has her own … [Read more]

A New Experience for Me

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, … [Read more]

The History of Cystic Fibrosis

Because the symptoms vary and are largely hidden, cystic fibrosis was only described and suspected for the last couple of centuries without having a true diagnosis of the disease until the turn of the 20th century. Observations of scarring of the … [Read more]

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