I saw a meme I really liked today…
“I stopped waiting for the light at the end of the tunnel and lit that b**** up myself”; this is the quote surmounted to the meme… ha!
For people with Cystic Fibrosis, or at least for me with mine, I don’t know how much more truth you can tag to such a statement..
I’m 26 now. I never got my lung function back up to 108% at the end of that month that I said I would. And guess what? It is okay. My most recent lung function rang in at 100%- that was two weeks ago.. Seven to eight more percentage points to go.
How have I been managing? I hold myself accountable to do my afflovest, nebulizers, and exercise every day. I chose to use medical equipment/ engage in habits that compliment what my personality entails; this helps me reach my adherence goals and ultimately, desired pulmonary function test results.
Since I was young, I have been an active/ on the go type of person. That being said, seems to make sense for me to have portable equipment! This change has helped me significantly, acquiring the afflovest and battery powered proAir nebulizer. I never knew such items were available, I had to do my own research and ask my doctors for prescriptions, which I obtained.
This portable nebulizer was not the one I wanted, the one I found online, but it was what I was offered- life is not perfect, so I take what I can get and do my best. Here is me with my doggie, Tobi ❤ Now I can do treatments while I play with him outside.
I have been doing less cardio and more lifting/ yoga, though today I did participate in “body attack” at Gold’s Gym which incorporated much cardio. From time to time I will stop in for a cycle class too..
After a personal poll and some thanks to Maxwell McGuire plus Chris Kvam, two friends with Cystic Fibrosis, Body Pump at Gold’s Gyms slowly became a constant/ my favorite class.
Gold’s Gym classes helped me become more organized and reliable regarding work out sessions. I know that everyday I can count on someone to be at the gym, expecting my participation, counting on me to “show up”. I have a hand full or a little more, to choose from for exercise groups, daily: body pump, cycle, body flow, body step, body attack, body combat, Barre, zumba, and of course hot vinyasa yoga. My gym has dedicated instructors here for me, Monday through Sunday, excited to work out with me, and encouraging me to grow. This makes me happy to exercise and easy to comply.
It also helps for me to chat with my friends that have Cystic Fibrosis about my exercise and treatment encounters. We have a special understanding of each other’s goals and how to achieve them/ encourage one another (mostly them encouraging me because I am so new to exacerbations and “climbing up the slope”). Having them here for me is a blessing.
Just as I said before, I needed the right tools to help me stay on track with doing my vest and nebulizing my hypertonic saline, Tobi, and pulmozyme. Now that I have the portable equipment, this is easy. Most often, with my sister on maternity leave, I leave my equipment at work. I do all of my treatments within 8-9 hours. Typically, I just do all of my treatments back to back. This is what works for ME. Maybe not everyone, but for me it does. I like to get it done in the most productive and speedily was as possible, this means, starting early morning with my antibiotics, ending my day with my antibiotic, and doing the hypertonics/pulmozymes/vest sessions in between the antibiotic time. In a perfect world, people would do their Tobi twelve hours apart twice a day; mine is done eight hours apart and my doctor told me that is okay. It is okay because it means it will get done and it will stay getting done in the long run.
In all sincerity, everyone knows that nobody does their treatment perfectly or the way they’re supposed to all of the time… We accept this. I accept it, and I do what works for me.
So, I have been attending the gym daily for a good while now; over a month? Doing all of my treatments… Getting my routine down and challenging myself.. Playing auntie to my newborn baby nephew, Parker ❤ Something I will mention in my next post.
I have a scheduled pulmonary function test and check up for mid April at Children’s Hospital in Washington, DC… We will see what is in store for me!
Keep lighting your tunnel! Please feel free to comment, ask questions, and or whatever else you would like to do.. I am here 🙂 Thanks for reading.
***I also want to thank Tom Nunnally for empathizing with me on my most recent post and starting his blog back up. See Tom’s blog at georgethomasweb.wordpress.com for his inspiring story.