Cystic Fibrosis Awareness Month + Guest Post!

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So I am not usually one to post two posts in one day but I definitely wanted to make sure this got posted and since I am going to be busy the next couple of days… well now seemed like the best time!
One of the best things to come from this Journey to Awesomehood (besides getting fit and feeling great) has been opening up and finally connecting with friends. When you are constantly lying to yourself and feeling uncomfortable, it is hard to actually form close ties with people around you. As I started getting serious about my health and opening up more, I found that loneliness I used to feel quickly vanishing. My fiance and I have truly been blessed with wonderful friends as we have headed down this road to healthiness. Having a large support group has definitely made getting healthier a lot easier so I try to look for ways to return the favor.

May is the month to spread Cystic Fibrosis Awareness. I know a lot of you might be looking at this blog and wondering how this has to do with weight loss. Well, it does not have to do with weight loss… but it has to do about being awesome! And this is my journey to awesomehood and not just to my goal weight. So anyway, Cystic Fibrosis has recently become something I care about because a person I care deeply about has it. I met her back in December when I first started on this healthy journey… and we hit it off instantly. She is one of the sweetest people I know. She just always seems so happy, and I love just hanging out. She is not afraid to just be herself, and I admired her for that right off the bat. So I was very surprised to find out a few weeks after first meeting her, that she has Cystic Fibrosis. At first, I had no idea what that even was. I had to google it, and it broke my heart to read the things I did. How could someone so amazing as her have such a terrible illness? It definitely does not make any sense to me, but I love how it never seems to hold her back. I normally don’t even think about it because she doesn’t really let it define her which is awesome.

I was a little upset when I found out only a week ago that May was Cystic Fibrosis Awareness Month. Not upset with her but upset with just how hidden it seemed to be from the world. I mean everyone is always going on about how Facebook should make itself Pink to spread Breast Cancer Awareness and such (and yes, I know Breast Cancer is terrible and affects a lot of people. I am definitely not trying to minimize its significance), but I never saw one of those copy and pastes status messages about Cystic Fibrosis…not a one. Actually, I never really saw anything about it until I started looking for it. It just seems like one of those things that you only really find out about if you actually have some sort of interest or connection. But I would like to help spread awareness because there isn’t a cure for all types of Cystic Fibrosis yet and it is an illness that does take people way before their time. So to help tell us more about it and growing up with Cystic Fibrosis, I have asked my friend to write a guest post! Because she can do a lot better job describing it than I ever could…

Hi all! My name is Christy and I am fortunate enough to be very good friends with Cassy. Because you, too, know how awesome and inspirational she is by following her blog, you probably would not be very surprised to hear how honored I was when she suggested I write a guest post about Cystic Fibrosis for her. Uhhh, OBVI! Whether or not you know much (or anything) about CF, you probably wouldn’t think it has anything to do with getting healthy, when in fact it has EVERYTHING to do with getting healthy!

Cystic Fibrosis (or CF for short) is a recessive inherited disease, meaning you are born with it and have to get it from both parents. Now, to avoid getting WAY too scientific about it, CF is essentially caused by faulty genes that then cause a certain protein throughout the body to not work correctly and leads to thick mucus, and really salty sweat. It is described as a respiratory disease that affects the digestive system as well. But just like SO many illnesses, there is so much more to it than that. I hope to give you a short glimpse of what CF means to a “cyster” or “fibro” (what we call girls and guys with CF).

One common misconception is that CF is a “childhood” disease. That, sadly, was absolutely true years ago- when I was a child, CFers were hopeful to live to 18 years. However, thanks to amazing researchers, the average life expectancy of a CF patient in the US is currently around 37 years. For us, that’s a whole LIFE longer than it was 20 years ago and there are now many adults with CF.

Another common misconception about CF is that it is a JUST respiratory disease that also has a digestive component. While these are absolutely the primary life threatening issues, CF is a disease that affects our cells and as a result, our whole body. In addition to frequent lung infections, CF causes pancreatic insufficiency which leads to malnutrition and difficulty maintaining a healthy weight. I know some girls out there may think, “Must be nice!” and I can’t TELL you how many times I’ve heard that. Sure, I can eat a lot more than the average person- but it doesn’t come free. EVERY time I eat I have to take a handful of pills that do the job that my pancreas can’t. What if I don’t? Bloating, pain, and constant trips to the bathroom- not fun. In addition, frequently getting sick requires energy. Having no extra fat on your body means that you get really sick really fast. While those are the obvious symptoms of CF, there are many additional problems that patients deal with. We often suffer from CF related Diabetes , CF associated arthritis, liver scarring, enlarged spleen, serious sinus issues, possible heart complications, infertility, osteoporosis, dangerously low vitamin levels, and I’m sure many more than I don’t even know about. One problem is that we are constantly dosing our body with antibiotics to extend our lives and stay healthy, but those could ultimately be causing other problems that can worsen over time.

We do inhaled nebulizer treatments and “airway clearance” (parents or significant others will pound on our chests or we can use other instruments that vibrate the lungs to loosen the mucus so we can cough it out) 2- 3 times a day which can take several hours, we give ourselves shots and IV treatments, and we take multiple handfuls of pills multiple times a day, every day. We often get over tired, and frequent respiratory infections and coughing often causes a lot more pain than you can imagine. Hospitalizations are commonplace and familiar (how many 20-somethings have favorite nurses in various hospital wings?? I do!). We get weird looks and are asked “do you need some water?” when we have coughing fits. Don’t worry, we aren’t contagious and thanks, but water won’t help. We worry about things most people don’t have to, like where the closest bathroom is at all times, whether a public place has a lot of sick people present, getting home from social engagements with enough time to do our hour plus of treatments and still get enough sleep, figuring out how to spend weeks in the hospital with as little impact on work or school as possible, or waiting for someone else to lose their life in order to get a second chance at ours with a new pair of lungs. We HAVE to work hard, not to necessarily get healthier, but to stay as healthy as possible and prevent getting worse.

But as awful as this disease is, it gives me and others a different perspective on life that I wouldn’t trade for the world. I don’t WORRY about getting old; I see every year as another milestone. I enjoy every breath that I take and any day that I can breathe, can move around pain free, and have normal blood sugars is a great one. I celebrate a 5% increase in lung functions (I generally function at 50% lung capacity). I am lucky enough to have found my passion and career early on and get to come home to a wonderful man who adores me, CF and all, and enjoy our amazing fur babies (two 5 month old kittens) together, every day. Sure, I get down in the dumps sometimes, but what good is it to spend my days feeling sorry for myself- especially if those days are limited?

In the words of the inspirational Eva Markvoort, a cyster who devoted her life to spreading the word about CF, and tragically lost her battle at the young age of 25, “Cystic Fibrosis means drowning on the inside, it means learning how to access my own med port at age 13, it means closer family bonds, as everyone pulls together to get through the tough times. It means making jokes about beating your children, and salty girls tasting better. It means living my life not for the number of breaths I take, but for the number of moments that take my breath away.” Right now, there are amazing drugs in development and getting FDA approval that bring us a thousand times closer to that big, amazingly scary exciting C word that has always seemed so impossibly far off in the distance for us. Every day, we fight our battle, individually and as a community, so that we can be one day closer to that famous day that CF stands for Cure Found.

You can check out my own blog about working towards my PhD while living with CF at:
http://cysterprofessler.blogspot.com/

For more info about CF, the CF community, making donations, or other ways to help, visit:
http://www.cff.org/
http://www.esiason.org/
www.CysticLife.org (there’s also a facebook page by the same name)

And lastly, follow Ronnie Sharpe, the creator of CysticLife at:
http://runsickboyrun.blogspot.com/

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8 thoughts on “Cystic Fibrosis Awareness Month + Guest Post!

    • Same here! I am definitely very grateful to have them in our lives! =D For both the knowledge and just for the fact they are awesome!

  1. Very nice post! Yeah, CF can largely be an “invisible” illness if people can’t “see” how someone is feeling. There’s a restaurant here that the bossman and I frequent, and every May they have regular customers who bring in materials about CF, as their granddaughter has it. She’s 16 now, and is able to live a pretty normal teenage life (with the right meds and treatments). They have done a lot in terms of research, and all the best to your guest poster! )

  2. Enjoyed the guest post – and learned a lot about CF as well. I have an old friend that i keep up with mostly on facebook, and she had twins that were born with CF – this gave me a much better understanding of the challenges she will face and they will face. Praying for that “C” word to happen!

    • Yay! I am glad you enjoyed it! I know I didn’t really know too much about it until I met Christy…and it definitely gave me a lot better understanding of the challenges people face! =D Keep praying for that C word!! Lots of positive thoughts!

  3. That was such a well written blog!! You certainly hit many of the key points and did such a great job explaining it all. Thank you for putting so much time in putting this together – it really shows 🙂

    And of course, thank you for the shout-out to CysticLife and my blog. Undeserved, but very appreciated.

    Ronnie

    • Christy definitely did a wonderful job, and I am so glad she agreed to do it! I wanted to do something to help spread awareness and I am glad so many of my friends and followers have learned at least something… and the shoutout was totally deserved! =D You provide a great resource for those with CF! So thank you for being awesome!

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