Monday, April 16, 2012

Please Excuse the Tears, This is Real Life......

Currently, I serve as the Chair on our Patient and Family Committee that the clinic put together as a recommendation from the National CF Foundation. Each official CF care center gets backing from the CF Foundation in efforts to attempt to ensure each care center is providing the same standard of care. With this backing comes financial resources to fund such things as our annual forum. We (patients and family) work with the nurses, doctors, assistances, etc to help find ways to better our center. In the beginning stage of developing the committee (6 yrs ago) we hashed out many different ideas and one of the many things we decided to do was host an annual forum. Each year's forum has a topic or a rough topic, we're getting better with nailing down a topic each year. But the idea is to give patients, family and support people the ability to hear first hand what is happening in the clinic and what we think is important to focus on. We bring in keynote speakers that have experience, knowledge, and degrees that cover what topic the committee has chosen.

I had the privilege of being a participant in the annual forum as a panel speaker for which they allowed me to share my experience on this years topic. I was the first of five panelists to speak; which included a brief statement about who you are, age at diagnoses, and treatment regime. Then we were asked questions about our experience with CF along with what role has exercise played.

Silly me, got all sorts of emotional when talking about my ability to run. I talked about how just before each race as the crowd is counting down.... 10.....9.....8; my mind wonders to all who have succumbed to CF and that I am running for them. They and there spirits are what carry me thru when I want to give up. I always have tears pouring down my face as I run thru the start line. Knowing how much each CF'er would give to be able to run or walk for that matter across the line (I just happen to be healthy enough right now). I talked about how wonderful my husband is in supporting me with exercise. How exercise in conjunction with my g-tube feedings has stabilized my health. I spoke about that fact that running and/or exercise for that matter are not my favorite thing to do but that I have seen an increase in PFT (pulmonary functions) which gives me solid reason to persevere. I encouraged parents to allow their children to engage in whatever form of physical activity they wanted (with dr. approval) because it will help them in so many ways. It builds confidence, give them a reason to do their meds (can't play soccer when your lungs aren't working), gives them a moment to forget about CF and just be. I also talked about how we as adults get weighed down by 'life' but its so important and can be something the entire family participates in. I know my hubby and I do a lot of working out together, and its fun to be together doing an activity that will keep us healthy.

As each panelists spoke, each conveying their story, their truth, their life with CF, they too couldn't help but let the emotions pour out. I was thinking that this isn't a public speaking event of what if's or if you choose this then x will happen. This is real life. This is our lives. One gentlemen spoke about getting an infection that nearly caused him to draw his last breath and how he has fiercely fought to rebuild lung function thru exercise, he has rebuilt lung function back up to 50-60% and is grateful for every %.

The biggest point I hope to have conveyed was that our bodies aren't just all CF. Our bodies need full comprehensive care. Exercise just happens to help reduce affects of CF and many other potential health problems. So, as we are living longer and being blessed to live in this era of amazing medical advancements we need to keep our bodies in tiptop shape so that we can reap the most reward from those advancements.


1 comment:

  1. This is great! I really enjoy speaking to others about my CF, too. I'm really glad to see you making such a positive impact and helping others realize how important exercising is. Nice job!