Life with CF — Page 24

New Features for a New Look

July 20, 2010

The old CFFatboy.com (version 2.0)

There has been something I’ve wanted to do with this site (and a few for clients) for quite a while, but even with my years of doing this I still needed to hire a programmer to get the job done, but I think it was well worth it. You’ll be seeing some new stuff around the site now.

You may have noticed the two little blurbs below this post if you happen to be on the home page (click “Home” or one of my pretty faces to see what I’m talking about). One is a quote, one is a shout-out, and down the page on July 17th, I posted an update on the Singing Cysters under CF News.
I’ve added a Donate page that I will get up and running with great options soon, but you can see what is in store by going there already.
I also added an Awareness Bracelet page, so please visit there and send me a message. I need your help with some questions, and there is something in it for you. I will randomly pick one of you who responds and send you 3 bracelets for free after I get 50 responses.
I’ve got a new social networking area below each post before the comments so you can share a post on your social networks if that suits your fancy.

Follow @norcross if you want to follow an even better coder than Fatboy.

Scar Tuesday – Show off Your Scar(s)

July 13, 2010

Meconium Ileus Scar: 1978 Style

I’ve got a huge meconium ileus scar that I’ve been self-conscious about my entire life. Now, in my old, fat age, it’s not stretching with the rest of my gut, leaving an odd-looking line across my midsection when I stuff myself after a good meal and I’m wearing a t-shirt that has become a tad snug around the middle. In fact, my favorite shirt I’m wearing to the right is starting to look a little ridiculous, so says Beautiful. I guess I have to agree at this point.

It wasn’t until I started following other CFers on their sites that I found out that there seems to be more who have a vertical scar than a gaping horizontal scar like mine. I’ve heard my dad say on a number of occasions that the surgeons really butchered me up with that first surgery – probably because it was 1978 and they didn’t give me much of a chance of living past 5 or 10, so what did it matter what my scar looked like.

Now, it’s a bit of a nuisance to the point that I’d consider some cosmetic surgery to re-align all of my muscles to get a beautiful 6-pack and get rid of anything in there that is pinning my scar in tighter than the surrounding area. A middle-aged gut on a CFer is a badge of honor that I will wear with pride, though I’d rather work back down to a washboard and maintain this weight.

My other scar

My other “big” scar is from my port when I was picking at the scab, not realizing how it was pulling apart while healing because they only used that 3M glue bandage that started peeling after a couple of days. The more I picked at the itching incision, the wider and more transparent the scar turned. This probably isn’t the best shot of the scar, but I haven’t found that new camera I’ve been looking for yet to take nice macro shots.

You can link to an external photo, such as Flickr or your Facebook or Posterous account in the comments, and it should show up for us if you want to show off your scar in the comments. Otherwise, tell your story on your blog and link to it with Linky Tools below with a mention/link to this post in your post so people know what’s going on.

Faith & Cystic Fibrosis: Observations & Discussion

July 11, 2010

I don’t know if you’ve noticed in your cystic fibrosis blog-hopping, but it seems like there is a disproportionately higher number of CFers proclaiming to be born-again Christians than the general population. However, those who are more on the agnostic or atheist end of the spectrum seem to have a disproportionately higher angst in their writing than, say a non-Christian business blogger. I’ve seen all lower-case drivel consisting of nothing but incoherent, disjointed complaining and anger at life in general. Living itself is a miserable prospect to some.

A fitting post for Sunday

I thought this would be a good topic for the day, since my premise is that most of you will be reading this before or after church, if you’re able, and can get the juices and discussion flowing on what is a normally slow blogging day.

It’s an interesting discussion of nature vs. nurture, I think. Are we more prone to think of our future – our eternity – than most or were we raised by parents who had to have something/someone to lean on during our struggles if they weren’t already living a faith-based life? [Read more…]

A Brief Pause in Memory of Conner Reed

June 28, 2010

I’m about to go waaaayyyyy out of my style and comfort zone on this one, but I want a record of this because this is worth remembering. Beautiful first found this site as they were bringing Conner home, practically Hospice-ready a couple of months ago. Thursday night, he lost his fight, and I’m sad even though I never knew him or his family, nor did I read his whole story.

I read of his last day this morning and how he went out with a final meal of a champ after so much suffering:

Conner asked for an Otter pop, he ate two. Then he wanted watermelon and he ate a slice, he wanted mini marshmellows, and ate alot, and then finally a banana. His last meal on this side of heaven. Such a great menu for him…

I am sad because he suffered. I openly cried sitting at my coffee table reading the story of a heartbroken mother recalling the last 24 hours. I was sad because I had a glimpse of what my parents went through nearly 30 years ago.

I rejoice because he has a perfect body now and is running around with lungs and limbs like never before.

Happy “new birthday,” Conner Reed Jones. Say “hi” to Jesus for me.