From the Blog

Cystic Fibrosis and Working Too Hard

OverworkedI’m working too hard again. It’s happened before, has happened again, and will likely happen again in the future. I’ve worked myself to the core. When the core gets exposed, it’s a real downer that feels like I’m falling apart. Literally.

The issue stems from my personality, a reminder that got sparked by a Facebook conversation with my fibro, James Fahr (you’ll notice him in the sidebar with a green indicator). You see, I’m classified as a “duty-fulfiller” according to the Myers-Brigg Type Indicator, and ISTJ. According to one description of an ISTJ, I fit it to a letter:

ISTJs are faithful, logical, organized, sensible, and earnest traditionalists. They earn success by thoroughness and dependability. Shutting out distractions, they take a practical, logical approach to their endeavors. Realistic and responsible, they work steadily toward their goals. They enjoy creating order in both their professional and personal lives.

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Hemoptysis: Bleeding Lungs

BloodIf any friends or family members don’t want to think about me bleeding from my lungs or what my cough is like from my perspective, come back for my next post… this one might be disturbing to you, but if you can stand it, it will give you a lot of insight into my past and present.

Still here? Good!

Hemoptysis is one of the words CFers hate. I’d rather be called a cuss word than a “hemoptysizer.” /shudder! It’s when your lung springs a vascular leak either due to an infection or when gunk that was previously in one spot eating away at your lining gets removed either from exercise or medication. It’s an indication of one of three things that I’m aware of as a non-pulmonologist with 12 years of medical training:

  • that something got dislodged over an infected site and you’re on the mend
  • that you have an infection that needs to be hit with meds
  • that you have an underlying pulmonary/vascular weak spot that needs to be plugged

My history of hemoptysis

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A Heart That Has Been Touched and a Life Changed

A Life ChangedI 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

4th Anniversary

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…]

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