"Whoa, What Are Those For?" CF Medications In Public
If you know anything about Cystic Fibrosis, you probably are aware of the insane amount of pills and other therapies that we require in our everyday life. While there are a lot of medications, patients with CF, like me, still have to go on with our lives like a normal person. This includes having to do our medications in public. When I have to take my Cystic Fibrosis medication in public, I am usually pretty discreet about it. Although, sometimes it’s hard to keep them from being seen. When I was in elementary school at lunch, I was asked many times about my enzymes. Being that young, I only understood that I needed them to digest my food. So, that’s what I told my classmates. Nowadays, people are aware I have something going on due to my constant supplemental oxygen. When I go to eat and pull out my 6 horse-sized enzyme pills, I get a “Whoa, what are those for?” or a “What are those for? They are HUGE. I can hardly take one small pill!” I use this time to create awareness for Cystic Fibrosis and explain that while CF affects my lungs, it also affects my digestive system causing a problem absorbing nutrients and breaking down food.
Another medication that is hard to hide is my breathing nebulizer machine. Sometimes I have to do it in public. When I was younger I was embarrassed, due to all the stares I received. Now, I do it with confidence because there’s nothing to be ashamed of. Some people come up to me and ask me about it. Like the enzymes, I always tell people about Cystic Fibrosis because it’s impossible to get awareness out without talking about. Plus, if the public is not educated about it, then there likely won’t be enough funding for a cure or drug development. When I get asked about my breathing treatment, I explain that I have a genetic illness called CF that causes my lungs to fill with sticky mucus that will eventually grow bacteria and cause my lungs to scar, which is irreversible. This can lead to needing a double lung transplant when the lungs are too scarred up and the lung function drops too low. So, in order to get this junk out of my lungs and to breathe easy, I need nebulized breathing treatments.
I am never embarrassed when people ask me questions in public about my medication. I find it as a way to open up someone’s eyes and heart to the struggles of a person with Cystic Fibrosis. I always hope that after speaking to the public, I spark an interest in them to go research it and hopefully get involved with their Cystic Fibrosis community to find a cure. Hopefully one day we will have a cure. That’s a world I dream about :)
It’s no secret that college is EXPENSIVE. Between tuition and treatment, you deserve a break. So check out the AbbVie CF Scholarship—this is for CFers only. Start prepping your creative presentation celebrating who you are…and yes, that means anything.
Whoever said enzymes are a CFer’s best friend, they nailed
it. Your pancreas works hard to produce enzymes that help
you digest your food. Sometimes, your pancreas needs a
little extra help making the proper amount, and that’s
where taking your enzymes comes in. Help a pancreas out.
Some mornings you wake up and feel in control of your life. On others we all need a little spark, something to light the way, a tip to remind us it can be done. What are your “I’ve got this” moments when dealing with your daily care routine? Share with us on our submission page to help other CFers take on the day.
When your body isn’t getting the nutrients it needs, everything is affected—including your lungs. So keep your body on track and talk to your doctor about your nutrition. Because nourishment goes a long way.
Enzymes? G-tubes? Extra calories? They can all help you maintain the weight that YOU need, regardless of what anyone else thinks. Don’t let anyone tell you what is considered beautiful. Be proud of who you are, and all that you have accomplished. Check out stories from Salty Girls, about how they overcame society’s views and began to feel beautiful in their own skin.
There may come a time in your treatment when you need a G‐tube, or other feeding tubes, to get the nutrients you need. Before you stress—let your doctors help you through it because your nutrition is too important to your overall health. Remember, you can cover up a button, but you can’t cover up malnutrition. How do you explain a G‐tube to people who don’t know what it is?
EPI and CF go hand-in-hand. If you ignore EPI, you may be ignoring your weight—which can directly affect your lung function. It’s all connected, so take care of your breathing and your nutrition. Your health needs both.
Summer is fast approaching and only a few exams stand between you and sweet freedom. If you’re going to be an undergrad or graduate student, the deadline to apply for the AbbVie CF Scholarship is around the corner.
Still working to get your submission in? Don’t sweat it, you still have time. Just remember your entry is due on May 24th, 2017. Good luck! :)
If you have CF, you may need your enzymes to help break all the right stuff down. So whether you’re cooking up a frozen pie, or treating yourself to one fresh from the box, make sure you have your enzymes with you. Don’t forget to store them in a cool, dry place and check them regularly for expiration dates.