From the Blog

Hope

Empty TombToday is Easter Sunday, a day of hope and restoration for millions who have put their trust in Jesus Christ for their eternity. Faith seems to be another major difference among us with CF. I’ve seen blogs proclaiming a living faith in Jesus and others who just go on “hoping” each day for a good day and others who are angry at the world.

I have to agree with one of my Cyster’s posts that I read this week right before she went in for her lung transplant. I don’t have it in front of me, but it read something like “Either I was going to be breathing like I hadn’t in years in a couple of days or like I never have before with my Maker tonight.”

There is a comfort knowing what the eternal future holds, even if the immediate future is unclear. None of us knows what tomorrow holds. Just because we have CF doesn’t mean a traffic accident or crime won’t take us away from our loved ones. If you died today, where would you spend eternity?

Happy Easter everyone. He is risen!

Light a Fire

The Ebb and Flow of Gaining Weight with CF

Light a FireAs you can see by my “growth chart” in the far right sidebar, I’ve been up and down, and way down yesterday. Let’s just say life. is. busy. It’s really hard to eat and drink when I get this busy. I am not an unconscious eater – I have to think about food unless I’m already starving. Throw stress into it, and I can ignore my hunger for hours. This is a story. This is a story about how a weekend can be hard and throw a wrench in your progress. In the end, this story will kick your butt and take your name. Please chime in with your comments if this strikes a chord with your and your life, struggles, achievements.

Saturday

Saturday, Beautiful let me sleep in until 9:15 because I was up until 4am coding for a client project that was pre-paid. The reason I was so inclined to stay up all night was because it was no earlier than 6pm that I realized that my Spanish 2 homework was due on Sunday. Then I realized that my Advanced Composition essay and exam were due on Monday. I had yet to begin any of said work yet because of, well, life running a business.

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Graduation Is Approaching – Not Fast Enough

This will be my 3rd family USF graduation.

It's going to be my turn, now!

University of South Florida

I’ve been going to college for the better part of 13 years now. I was accepted into the Honors Program at the University of South Florida (USF) in the Fall of 1997 with a full-ride scholarship to study pre-med/psychology. I managed to train wreck that within 2 semesters, but kept attending on a 75% scholarship for a while.

Hillsborough Community College

In 1999, I transferred to Hillsborough Community College to work an art degree. I’ve always been good at graphic design, but found that track too subjective in the grading because it was all about whether or not the professor liked the work. I sort of dropped out at that point with about 50 credit hours, but missing a lot to get my A.A.

It became pretty obvious to me that my girlfriend’s dad values higher education a lot when, one day out of the blue, he offered me a 50% scholarship to find out what classes I needed to get my A.A. – even liberal arts – and wrap that chapter up. Wow!

I think it came out to something like 6 or 8 more courses, but I had a full-time job at that point. I did it anyway, taking 2 classes at night once per week for the next year and finally got my A.A. It didn’t, however, earn me a raise at work.

A “real” job

It then became pretty obvious to me that my girlfriend’s dad thought I was in a dead-end job and sent me a link to a computer-related job at the company where he works (5,000+ people worldwide), but it was up to me to write a decent resumé to get the call and have a killer interview because this was a direct-hire position, not temp-to-perm. I got the call 2 weeks later, an interview that involved 4 department heads, and was offered a position to start the next week: August 1st, 2005.

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Fatboy’s Take on the Healthcare Reform Bill

Please, Mr. President, Don’t Kill Me

I had no intention of doing anything remotely political on this site, but I’ve just been overwhelmed by the number of tweets, Facebook statuses, and blog posts that I’ve seen from the cystic fibrosis community in favor of the bill that passed last week. Overwhelmed to the point of needing to speak out.

Disclosures first

I took the Nolan Chart survey to find out which political sector I fall into based purely on my views of what government should be. I would suggest taking the survey, too, because it may help you think about things consciously that you just regurgitate what you’ve known from your house growing up.

Libertarian: supports the smallest possible government, supports individual liberty in all ways, prefers to only defend our borders and not interfere in other countries’ affairs

I scored as a libertarian, near the conservative line. I’m not hard line libertarian, though, because I believe in a strong military backed by government money and the Interstate System. Until we can get everyone in private schools funded by some sort of consortium of parents, I suppose I have to agree with public education for now, too. I will use their “working definition” of libertarianism for now.

I do not believe the government knows how to run anything right, or at least better than a private company. Examples: USPS vs. FedEx, Medicare/Medicaid vs. Aetna, Social Security vs. mutual fund 401(k)s invested in properly. Money is wasted left and right, like for studies to see if people have slower reflexes when drunk or if students get lower grades in college if they don’t attend classes. Special interests rule the day, and I’ll be shackled and sent to Azkhaban before I become one of those suit’s special interests.

I earn my money. I’ve earned my degree. I pay an exorbitant amount of self-employed taxes (over $6,000). I pay thousands of dollars ($440/mo in expenses and $485/mo in premiums) for my health care alone, but I’m in charge and no one tells me “no, that isn’t covered.” I’ve been blessed by the Creator with trillions of neurons that I choose to fire of in a dazzling array of faith, love, motivation, determination, grit, and an iron will to survive, thrive, and spur others on to the same greatness that I have achieved. Granted, I’m not a household name or anything to brag about, but I’m proud of every achievement notched in my belt that the government never had a hand in.

The CF community

I see CFers running around saying that they can’t get coverage or they will be denied any useful coverage because of their pre-existing condition, but in most states, if you work for a company with more than 50 (maybe even just 15) employees, insurance companies cannot enact a pre-existing condition clause. I’ve never not been covered as a result. Now that I own my own company, I paid COBRA for a year and used the HIPAA guarantee and prior-coverage certificate to wave the one year delay on pre-existing conditions again.

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