From the Blogposts » inbox

Cystic Fibrosis Is Not My Identity

I will never say, “Hi, I’m Jesse. I have CF,” and I will kick anyone who introduces me in that manner. I am Jesse, the WordPress guy. “This is my husband, Jesse.” I am Jesse, the owner of this company. I am Jesse, member of Oakwood Community Church. I am Jesse, an avid gamer. Jesse the blogger. Jesse the (soon to be) college grad. Cystic fibrosis does not own me! I’m not a spokesman or a poster child for CF. I’m not against sliding into some speaking or training, but I’m darn sure I don’t want that to be my identity.

I’m more than that.

I’m also sick of those “woe is me” CFers out there who choose to be victims of the disease, their insurance, and their frigged up lives because they chose to not make anything of themselves by not applying themselves in school and having zero ambition. You do not have my pity… however…

If you so choose, I will offer to help you make something of yourself through tips, motivation, and even recommendations of how to better yourself health-wise, intellectually, and by meeting and hanging with the right people. Studies have shown that you will fall within 10% of your 10 closest friends’ income after a 5-10 year period. I believe the same goes for health, education, and everything that is pervasive in one’s life.

Anyone who wants to take me up on getting out of a lame cycle of being a victim, feel free to take me up on my offer and contact me via my contact form or Twitter @cffatboy.

The Purpose Behind

I have several purposes for this site, though I’ll admit straight off that it began as an accountability device to keep up with my treatments. I’m putting my life, my health, and the related aspects of my relationship with Beautiful out there for everyone to see. In addition to that, I want to educate, build a community, and entertain. I plan to entertain with my writing, which I’ve honed over the last 5 years of blogging and 3 years of intense English courses, culminating in getting my B.A. in English this coming May. Thank you all so far for the tweets to @cffatboy and e-mails I’ve received noting my writing. I truly do appreciate it.

I wanted to have an open-door policy on my writing today because I’m planning on posting my next CF-related essay that I’m doing for school. I’ve got an incredible professor for my last, and highest-level English course: Advanced Composition. To put it in perspective of my other courses, everyone in college starts with Comp. 1 & 2. That’s where most people end, unless their major requires some literature. For me, as a Professional and Technical Writing major, I continued on to take Modern Short Novel, 3 British Lit courses, 3 American Lit courses, Professional Writing, Technical Writing, Advanced Technical Writing, Expository Writing (non-fiction writing), an instructor-level grammar course, and now my Advanced Composition. Dang, I feel like an expert at this point!

My first essay for the course is getting a few tweaks before I submit it to Newsweek for publication as a “My Turn” essay. Part of the agreement is that it has to not be previously published, which includes personal sites/blogs and that sort of online publishing. Once I submit it, I have to wait up to two months to know if they are interested because they receive over 600 entries per month and only contact you if they are interested. After that, I may publish it elsewhere, probably choosing my local daily paper called tbt*, which has published all of my letters to the editor thus far.

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Beware of Oral Thrush from Neb’d Meds

I’ve got thrush for the second time in 9 months. This time, I knew what it was and what it was from, though, so it didn’t get nearly as bad as the first time. For those not familiar with thrush, it’s also called Candidiasis (click the oral candidiasis link if you REALLY want a photo of how bad it can get) and is a fungal infection, in my mouth/throat in my case. It’s basically a yeast infection of a similar variety to what those gross TV commercials remedy.

The source of the growth: AZLI/Cayston. I’m still on the extended study rather than the new Cayston. @UnknownCystic would probably like me to point out that he gets thrush from Advair. While I’m on Advair at this point, I’m not as devoted to that med yet and I know I was out of Advair when I was on the trial the first time I got thrush. I called my coordinator and told her I started on my bottle of nystatin oral solution last night because of the thrush.

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Clinic Update, from the Bowels of TGH

I’m still in clinic waiting to see the dietician (for obvious reasons regarding the site), even though I’m not scheduled to see her. Let’s take a look at who wins the FEV1 guessing game, shall we?

The guesses were:

Beautiful: 34% FEV1 %
Fatboy: 38% FEV1 %, 120lbs, 98% O2 sat
Unknown CFer: 36% FEV1 %,

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