compliance

Still Compliant, Still Gaining Weight

May 21, 2011

As quite a few of you on Twitter and Facebook are aware, I had another intestinal scare on Thursday. You see, Beautiful wrote about enzymes on Wednesday and every time she or I write about anything to do with blockages, something happens. Without fail. It’s really quite creepy and must stop this time. I’ll get to my lungs and weight soon, but first, it’s story time.

Thursday morning

I woke up feeling out of sorts and shrugged her off and indicated that I wasn’t feeling well when she came to wake me up on Thursday. I got up around 8:30 and started my treatments, but was feeling sore and crampy, only it wasn’t in the usual blockage area indicated from my long history of blockages. Like a seasoned veteran, I weighed the pros and cons of having an omelet for breakfast and just went for it with plenty of enzymes.

I got upstairs to start work around 10:00 and was more or less completely unable to concentrate. The cramps were coming in waves and in harder and harder force, but I can tell the difference between a resistance cramp and an uncomfortable cramp. These were the latter, no nasty, tight ball of crap anywhere to be found by exploratory pushing of my squishies. Sore, yes, but I didn’t have the tell-tale knot of disaster. Beautiful went back downstairs seeing my clear distress and got me a 20oz Gatorade and an extra Dulcolax to hydrate and flush anything that was in there.

Thursday afternoon

I was feeling better by dinnertime and insisted on eating despite Beautiful’s firm reminder that I “felt fine” before our Outback dinner for my birthday 2 years ago. [Read more…]

Be Compliant… or Else!

April 19, 2011

It’s sad to say, but I’m talking to/about myself with this one. I’ve been writing a post for 4 days now, but I’m in a completely different state of mind now, so I’ll post it later as a reflective piece. Today, I’m kicking butt and taking names again, but Friday wasn’t so much of the same.

I went for an unscheduled clinic visit Friday because Tuesday was a day of misery. I was wheezing and whistling. Each breath was labored. I was coughing up junk with each cough and I was having dozens of spazzes every day. The only things not happening were bleeding or fever.

I was down almost 10 lbs since Feb. 18th, but I blew the same PFTs: 35%. It didn’t make sense how I could feel this bad and still have 97% O2 sats while constantly being out of breath. 97%!! I don’t have that when I feel like a friggin’ ox!

The doctor came in and took a look at my numbers and what I wasn’t doing every day came from Sue… and me. He asked, “Why?”

Chronic entrepreneur

I’ve been under a lot of stress making sure we have enough money to pay our bills each month now that Beautiful stays home. The amount our budget has gone up since I worked in the office is profound, and now we’ve subtracted her income from the mix. It sure makes budgeting easier to just say, “This is how much you need to earn this month,” but I feel the physical effects of the stress in my lungs.

[Read more…]

200th Article: Changing the Standard of Thinking

November 19, 2010

Well, we’ve done it! Fatboy has 200 cystic fibrosis posts out to press since March that have changed my life and many of yours, and I couldn’t have done it without you reading, commenting, and spurring each other on to become better than we were the day before. Sure, there are times of two steps forward and one step back, but think of where you and I were when we started, each at our own time. We’ve encouraged and informed until our collective body is better for wear rather than letting nature take its course on us.

Congrats! Sit back and relax (if you can) for this long, evolving brain dump with an excellent climax and conclusion that won’t disappoint. (Or you can join my Changing the Standard of Thinking campaign now, knowing you want to without reading this).

Time for a major change

If there is one thing certain about my life it is: your life will always be in a state of change, no matter how hard you try to stabilize everything. I started this site with the two-fold goal of journaling my journey to 23BMI and to test the waters to see how I handled essentially “coming out of the closet” about my CF in a much more public way than ever before. My weight has come back down the low to mid 120s, but my doctor is very happy with things as they are, and other life events are preventing me from keeping eating as my primary full-time job. In order to ensure being able to put any food on the table, I’ve had to concentrate on completing the work that is scheduled and leave eating to mealtimes. But there is good change in the air…
[Read more…]

Meet Fatboy’s CF Coordinator: Sue

August 2, 2010

I went out on a limb one day a while back and asked my totally awesome coordinator if she would be willing to answer some interview questions so we, as CF patients could get her perspective on what she does and what we do/do not do as patients. I was threatened with life and limb or something about never getting another Rx again if the photo we took at Great Strides ended up on the Internet, so this post is sans-Sue photo. Instead, I’ve used a photo of a person pretending to be Sue. Just so we’re clear – this is not Sue (of course, she knows that!), so I can continue to receive treatment at my CF center.

She warned me of her rambling answers, but after reading through them, I have editorially decided to leave them be, and de-labeled them as rambling. It’s rather a stream of consciousness that makes perfect sense. I think they tell an interesting story that I’d never heard, and I’m sure most of you haven’t either.

Fatboy: Ok, so I know you’re an RN, but how did you get so darn good at being a coordinator with all of the administrative things that you do? You’re undoubtedly one of the reasons I’ve been able to get and remain compliant because of easy e-mail access to the doctors through you. Before it was like jumping through hoops to get meds or an appointment. Did you set out to change that or was that why you were selected as the new coordinator. Mad props to your administrative abilities. I couldn’t do your job.