A blog about living life despite battling Cystic Fibrosis.

The World Didn’t End

Sunset

This is the day I have been dreading. The day that I felt like the world was going to end. The day that means I will never escape to Neverland. Let’s back up a little…

When I was nearing the end of my high school career, I had to choose what I was going to do with the rest of my life. I have never been a planner. Not due to my cystic fibrosis or anything, it’s just not my personality. I can’t plan an outfit or a meal, let alone the rest of my life. So here I was in my senior year of high school. I had a great passion for music. I had people left and right guiding me away from performance because it wasn’t a very stable career path.

There’s this whole big thing about following your dreams and not letting your disease control your life and blah, blah, blah. I would not have made it, though. I know that and I have made my peace with that. I also knew I DID NOT want to teach music. My patience is nowhere near teaching level.

But I HAD to go to college. The rule was that if I wasn’t a full-time student, then I couldn’t be on my parent’s insurance. Then where would I be? So I had guidance from wonderful teachers to major in music business. This would allow me to follow my passion of music, but give myself some security. So off I went.




Fast forward a couple of years to my second year of college. I was doing alright in school. However, I was “burning the candles at both ends” as my mom would love to say. I was getting pretty sick and my health was taking a toll. I had no idea what I was going to do because I knew I couldn’t keep going at this rate.

However, this was right when the rules of insurance changed. Now I was allowed to be on my parent’s insurance until I was 26 (instead of 24) no matter what. This meant that I didn’t have to be a full-time student. I ended up dropping down to part-time for two semesters and getting back on track. A few more years go by, and I eventually end up graduating college with taking only one semester off, those two part-time semesters, and the rest full-time.

Now we get to the real world. Where I have to find a full-time job with good benefits. That’s all fine and dandy, but I was already 24 (as opposed to 22) by the time I finished college. That left me with less than 2 years to network, find a job, and establish myself before getting kicked off my parent’s insurance. It’s something that freaked me out for a while.

Eventually, I landed in my perfect professional space: A local restaurant with the most caring people I have met, working with local musicians and doing what I love. Then my fear started coming from a place of the unknown and financial stability. Restaurant management is not a glamorous job, but I am happy with what I’m doing. Having a career I enjoy is much more important to me than having one that pays a lot. (We can chat about that in another post, though.)




Instead of worrying about having a job that would provide the benefits I so desperately needed to live, I started worrying about the transition. My social worker from my CF care team spent the time to look over each detail of my benefits and explain them to us. A wonderful woman at CFF Compass spent an entire hour on the phone with me making sure this was the best plan for me. Every tech that I spoke with at my various pharmacies patiently answered my plethora of random questions. My mom taught me several of her tips and tricks she’s learned throughout the years of managing my health. My boss and our insurance representatives kept me informed on the progress of my insurance application. My fiancé supported me through months of reworking our budget and letting me fret over every penny to make sure my mind was at ease.

After spending the better part of 4 years worrying about health insurance, yesterday was just another day. I didn’t even realize until 8pm that it was my last day on my parent’s insurance. And when I woke up this morning, it was just another day. The world didn’t end.




Leave a Reply