Cystic Fibrosis Fatboy — Page 46 — The daily quest to gain weight

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…]

Annual CF Clinic Visit 2010

November 12, 2010

Today was my annual clinic visit. Not the dreaded annual, but it was not my favorite day, until just about half an hour ago when I found joy despite the bad or discouraging things of the day. I have to preface this with acknowledgment that Sue (my coordinator) told me that I wasn’t allowed to blog about today while I was still sad or upset about the visit. Now that I’ve found my joy, I’ll start writing – you know I’ll still be transparent with you about all of my ups and downs, though. Just know that I still will go to bed a very happy man despite CF and despite some things that made me feel less of myself.

What the annual involves

At the Tampa CF Center at TGH, the annual visit includes a full blood workup, urinalysis, sputum, PFT, doctor consult, dietician, social worker, and chest x-rays. They drew 9 vials of blood in the time it takes me to donate a pint – a hilarious 2 minutes to me. Next is the standard PFT that I showed from my last clinic visit. Then I went to radiology in the main hospital for my x-rays and hoofed it back as soon as I could (about 20 minutes later) for what is usually the doctor. He was running late because they were a doctor down and I got the impression that there was a recent transplant that he was attending to. I got to see the social worker before the doctor, but then it was him (head of pulmonolgy), the dietician, a surprise test, and then a second consult, and off to my next thing. I got there a tad before 7am and was out at 11am, but I’m usually out by 8:30 when both doctors are there and it’s not an annual.

Not a happy camper

My day pretty much started out bad with my PFT results. [Read more…]

A Heart That Has Been Touched and a Life Changed

November 10, 2010

I got a personal e-mail today that touched my heart like none that I can remember. Maybe there have been others in the past related to something I’d been going through or something that I had recently accomplished at the time. This one was different. Since I’ve not asked permission to reproduce it, I will leave the person anonymous and edit it for the heart of the matter. I want to get my feelings out in pixels before they fade away into sleepy oblivion.

I was diagnosed fairly late in life (around 20) and have had my ups and downs since then. Most of my struggles have been with gaining weight and keeping a good fitness routine. My baseline weight was around 105, and I’ve dipped up and down around that number for years now.

A little over two week ago at a clinic visit, my weight was 99.7 pounds, and FEV is 42% with basically no daily exercise. I decided “enough was enough” and committed myself to a regimen that included gaining lots of weight and getting in shape. Your site was actually one of the first I found that helped get me in the mindset that I could do this.

Over the past 13 days, I’ve gained 10 pounds back and have hit the gym (both cardio and weight training). I’ve been posting on CysticLife and other sites, and many people have recommended I try to get in contact with you personally…

Mindblow! He’s, like, my brother or something. Do those weights sound familiar? How about that “enough is enough” attitude? I felt like I was reading a mirror of my thoughts back in March when I had my epiphany. [Read more…]

Adding Another Career to My Cystic Fibrosis Life

November 9, 2010

4th Anniversary

Being done with school was a big deal for freeing up my schedule, but now it’s been full again… and it’s about to get more full. Remember, Fatboy is not a victim of cystic fibrosis!

I can tell you more details about my next career move now that things are a LOT more concrete. I’ve mentioned on there and my social networks that I now have a Manhattan PR firm representing me and my public CF interests for advocacy, awareness, internal and external publications, websites, product testing/reviews, media coverage, and public speaking. That got me pretty excited and I was more sure than not that something was going to come of it, but it only took a day.

Gilead (makers of Cayston) will be flying a film crew here to spend the day with me in late November or early December to see what a day in the life of Fatboy looks like, film me training for the 5K in February, and there is talk of coming to film me crossing the finish line (no pressure, Fatboy!!) on race day.

I had another call with the PR firm the next week and they sent me another contact that same evening about another entity of Gilead who pretty much want to “use” me for all of the activities above. They will be sending a welcome packet in the mail now that I did an hour-long phone interview with them today to find out pretty much everything about me to know how best to call upon me for certain opportunities, which I said “yes” to all of.

This would be pretty overwhelmingly exciting and potentially lead to giving me a big head if it wasn’t for my new-found goal for actually using my having CF for good. [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 … [Read more]

Annual CF Clinic Visit 2010

November 12, 2010

A Heart That Has Been Touched and a Life Changed

November 10, 2010

I got a personal e-mail today that touched my heart like none that I can remember. Maybe there have been others in the past related to something I'd been going through or something that I had recently accomplished at the time. This one was different. … [Read more]

Adding Another Career to My Cystic Fibrosis Life

November 9, 2010

Being done with school was a big deal for freeing up my schedule, but now it's been full again... and it's about to get more full. Remember, Fatboy is not a victim of cystic fibrosis! I can tell you more details about my next career move now that … [Read more]

Time for a major change

What the annual involves

Not a happy camper

Time Elapsed Since IVs