I’m pretty sure everyone in FB land knows that I have Cystic Fibrosis. Every year, I post about raising money for the CF walk. This year, I’ve been thinking about this a lot, and I realized that I’m an absolutely horrible example of Cystic Fibrosis, so many people I know probably don’t realize the importance and the urgency of raising money for it. I mean, I’m healthy, so it must not be so bad, right? I decided I’d share a little peek into my CF life with all of you in order to make clearer what this disease entails for me. I do this to spread awareness. I absolutely do not want sympathy. I do want to share the information and perhaps inspire some of you to join us at the walk this year, or to donate money.
As a healthy CF patient, I take 22 different medications each day. That’s a total of 25 pills, 3-5 nebulizer treatments (totaling 60-75 minutes a day), 30 minutes vibrating in an inflatable vest, 6 puffs, and 2 sprays of medications. And that’s when I’m healthy. I also have Cystic Fibrosis Related Diabetes (CFRD not type one or type two) meaning that my blood sugar bounces around like Jackson in a bounce house, often with no rhyme or reason. Exercise is also a critical part of my health, but as I’m sure everyone else out there knows, finding the time to exercise with a busy sixth grader at home and a full time teaching job is often very challenging.
Back to the reason I’m a terrible example of Cystic Fibrosis, and a horrible fundraiser as a result. I’m healthy. Most people with Cystic Fibrosis are not. I watched my sister’s health decline so rapidly that even machines couldn’t keep her alive. I watched as my brother’s weakening lungs ravaged his otherwise strong body to the point he chose to end his life. I’ve seen friends go through lung transplants, and heard of many, many other friends in the CF community who lost their battles before even reaching the age of 18. I’m going to be 48 this year, and it’s kind of crazy for me to think about. I’ve already outlived my eldest brother and sister who were 41 and 35 when we lost them. The life expectancy for Cystic Fibrosis patients is 37 (last time I checked), and I have to try really hard not to think about that. The psychological impact of all this is also tremendous, as you would expect.
So why am I doing so well? It’s a question I ask myself all the time. Do I have a positive attitude toward life? Yes. Do I have a lot to live for? Yes. Do I have the best medications and treatments at my disposal? Yes and yes! I can thank all of you for contributing to my attitude and life. If you’re reading this, you were a part of making me who I am. The reason I’m posting all this today is because I’m trying to raise money for Cystic Fibrosis research. The Cystic Fibrosis Foundation funds research on incredible medications (and of course they’re looking for a cure). Because CF isn’t a very common disease, the foundation funds the bulk of the research being done, and it sure isn’t cheap! If I am going to live to be really old, which I fully intend, then we need even better treatments or a cure. The way these are discovered is through research, and research costs money.
So, won’t you please donate to the Cystic Fibrosis Foundation through my page? Or even better, walk with us and collect more donations from people you know? The walk itself is at the Detroit Zoo on May 5 at 8:00 am. You even get into the zoo free! And you can bring your kids! It's a win-win! :) And thank you to my friends who always join in or donate each year. Your support means so much! I'd like to challenge all my walkers this year to raise at least $100. Please, if you're walking, don't donate to me - donate to yourself and ask others to do the same!
I hate asking for money, and I know that everyone has a lot of organizations that they give to, but even the smallest donation could make a huge difference! There are 30,000 people in the US with CF, and every one of them can benefit from your donation.
See my Great Strides Walk page below for more information. And thank you to all of you even if you read this and just click “like” I will know that I’m at least spreading awareness. And for the record, I’m actually quite thankful to be a horrible example of CF. I’d really like to keep it that way! Thanks for reading everyone!