So sorry about my recently blogging break, but I’m here, rejuvenated, and full of even more surprises. I bet you didn’t think my first post back would be all about Cystic Fibrosis, but I couldn’t wait any longer to shout from the roof top all the amazing things that are going on in this community of strong, inspiring people. No, I do not have Cystic Fibrosis, but you don’t have to have it or even know someone who does to feel connected. If you’re anything like me, you’re going to love reading about Rock CF and how/why people with Cystic Fibrosis are using nutrition, running, and other types of fitness to improve their quality of life and extend their life expectancy.
About a month or so ago, an old friend messaged me telling me that she had been sharing my recipes with her Facebook group called “Rock CF 365.” I was flattered, but even more so I was just really interested in why nutrition and running seemed to be so relevant to this population. This friend’s name also happens to be Margaret (pictured below on the left with her mom) and she also happens to have been my babysitter when I was younger and even more annoying than I am now (bless her). The more we talked, the more I realized how relevant this is to me and my readers and from there, she introduced me to Emily Schaller who is the founder of a really cool organization called Rock CF from Detroit, Michigan.
I’d seen the Rock CF t-shirts a time or two and secretly really wanted one, but I’m embarrassed to say that I hadn’t researched enough to know what they were all about. Over these past few weeks, I’ve had the privilege of talking to these two inspiring women who have been diagnosed with this disease and while it does come with many challenges, Margaret and Emily are finding ways to control their illness and are now inspiring others to do the same. Hell, they are even inspiring me to take my health more seriously and to be appreciative of what healthy food and exercise do for all of us.
My CliffNotes from school and interviewing Margaret and Emily is that it’s a disease where a thick, sticky mucus builds up in your lungs causing frequent upper respiratory illness, coughing, and shortness of breath. Margaret even says, “sometimes it feels like you have an elephant sitting on your chest or like you are breathing through a straw when your lungs are so tight.” It is a lung disease, but the mucus causes GI issues as well and it affects your pancreas, liver, sinuses, etc. Some people even have CF related diabetes, but there are only 30,000 people in the US who are living with CF (70,000 worldwide) so it’s hard to get backing for study drugs, etc. It’s even called the orphan disease because it’s so neglected.
Well as the other Margaret explained it, exercise helps promote lung function in anyone, but even more specific to this case is that running in particular helps break up the mucus in the lungs and helps them cough. Margaret says she spends 45 minutes to an hour every morning and evening wearing a therapy vest that makes her cough, so you could see how this would be beneficial. The less build up they have in their lungs, the less likely they are to come down with something. But don’t take it from me, you HAVE to watch this video! Warning: he might be faster than you.
For many people with CF, nutrition is important because they need a lot of it. Many people are Pancreatic Insufficient, which means they lack certain digestive enzymes needed to uptake the nutrients in food. Emily and Margaret take digestive enzymes to help, but both report that they often need to eat 3,000 + calories a day to maintain weight. They recalled that growing up, it was so stressed by their doctors to consume these incredible amount of calories, but it was never stressed to get the right kind of nutrients that their bodies so desperately need. Now that they are older, they are finding the benefit of eating high quality food that is also high enough in calories and nutrients.
Okay, now here’s the really cool part. As I mentioned, Emily Schaller founded Rock CF, which started off more music focused since Emily was a drummer. In 2004, they had their first concert to raise money and awareness for CF, but she also wanted to give young people with a disease something cooler to do with their peers other than the usual bowling nights they were accustomed to. Over the years, as she discovered the possibility and benefits of living a healthy lifestyle, the foundation has also shifted in that direction. Today it has grown into a Rock CF Rivers Half Marathon and so much more. They even collect shoes to donate to CF patients who want to start running through their Kicks Back program.
If you want to hear even more about Rock CF, I’d encourage you to check out their website, facebook, and to buy one of their t-shirts (really just because they’re cool and it supports research and funding!) If you know of anyone with CF looking to become healthy or who just want to connect to other people, they can find Margaret’s Facebook page here.
I was so inspired by their stories and how they have to find ways to consume enough calories, but want to make sure they are from quality sources that I made a signature CF smoothie. Not only does it taste like a sinful dessert, but it’s higher in quality calories and jam packed with nutrients and amazing ingredients that I researched and figured would be an ideal breakfast, snack, or an anytime supplement to their diets. It’s also something that I can’t wait to start using as a post workout meal because this puppy has restorative written all over it.
- 1 tbsp chia seeds
- ½ c coconut water
- ¼ c coconut milk
- 1tbsp ground flax seeds
- 1 banana
- 2 tbsp almond butter
- 1 c spinach
- ½ avocado
- 1 date
- 1 tbsp honey
- ¼ tsp salt
- 1 c ice
- 1 tsp coconut sugar (optional garnish)
- Blend all ingredients in a large blender until ice is fully incorporated into a full, creamy smoothie.
- Garnish with optional coconut sugar by smearing a dab of honey around the rim and lining it with sugar.
Disclaimer: In no way was this post sponsored, but afterwards my friends sent me a sweet t-shirt that I haven’t taken off since Saturday. This information was a compilation of knowledge from the ladies interviewed and based on research, but I’m not a doctor and you should still consult your medical professionals before doing anything.
Do you know of anyone with Cystic Fibrosis?
What’s your go-to healthy snack or meal when you’re not feeling well?
What did you know about CF before and what did you find most interesting through Margaret and Emily’s stories?