Fighting to Stay Healthy: Cystic Fibrosis Daily Care–A look into my life as a patient and caregiver of Cystic Fibrosis and the role that medications and a medical plan play in my day to day life.
At the end of everyday I am exhausted. You too?
And sometimes it seems overwhelming to think that I have to get up and do it all over again. I bet you have been there as well.
There are times I wish I could take a day off and lay in bed and eat Peanut Butter Cups and watch Netflix all day. But I can’t.
I am not talking about taking a day off laundry, making dinner, or going to work. We all need to take those kind of days off here and there.
I am talking about taking care of my body–fighting the fight against Cystic Fibrosis every day so that I can live a longer life, be a mom, a wife, and friend and hopefully live long enough to see a cure.
My two children, Tate and Layla, have Cystic Fibrosis. I have Cystic Fibrosis.
Taking care of ourselves is like a job. A job we do not get to take a day off from–EVER!! A job we can’t change, didn’t choose, and frankly don’t really like!
Daily Cystic Fibrosis Care
So what can we do about it? How can we stay positive and fight the fight against this deadly disease?
We can become CF Champions!
What is a CF Champion? In my opinion it is someone who never gives up hope that a cure will be found. Someone who understands the import role that medicine and lung clearing exercises play in the the quality of life for someone suffering with Cystic Fibrosis.
For me personally, it is taking great care of myself by going to the doctor regularly, taking my prescribed medications as needed, and closely adhering to my medical plan of action. For me as a mom and caregiver of 2 children with CF, it means ensuring both of my children are taking care of their bodies through a healthy diet, routine appointments, taking their medications, and trying to keep their experience with medications and treatment as positive as I can.
I need to model how to live a life that is impacted by CF but NOT defined by CF.
So let’s break that down in a bit more detail. After one look in my medicine cabinet, you can see that staying on top of medications is anything but simple.
I start each day off by monitoring my blood sugar. As a result of my disease, my pancreas is not so nice when it comes to regulating sugars in my body!
Then I take my laxative which helps with all the digestive issues I deal with–unabsorbed fat and intestines are not a good mix.
While I let that work, I have my quiet time as I am hooked up to my neubulizer. It is a great way to ensure I have 30 minutes of time to get my day off on the right path. Once I have completed my inhaled medications, I do my acapella machine to help cough up any loose mucus.
After my morning routine, it is time to get the kids up and start their routine.
And by this point, I have to eat! After a balanced breakfast that is served up with pancreatic enzymes, the kids do any breathing treatments they need before heading off to school–while playing electronics, because to them that is such a treat they don’t even care about having to do the treatment!
Once my kids are off to school, I return home sanitize all our equipment and then workout. I do light weight training and cardio. Cardio keeps my lungs strong and weight training helps keeps the osteoporosis in check. After my workout, I try to eat a balanced, high protein snack to recover all the calories I may have burned during my workout. My weight is low–I do NOT need to lose any more!
As I go about my late morning, afternoon, and early evening, I am sure to do 2 more rounds of laxatives and to keep eating every 2-3 hours with the appropriate enzymes. I also have packed enough high protein foods to get the kids through the day as well.
Do they like going to the nurse’s office several times per day? Um, probably not. However, their sweet nurse has a message board for them and they have taken to writing each other jokes throughout the day. Quite a clever way to make taking meds not so bad!
We have a routine at dinner. My oldest, Tate, is amazing at keeping things straight. He has the job of laying out everyone’s pills for dinner. This includes allergy pills, antacids (to further help with absorption), enzymes, and multivitamins. That is a lot of medication for one person, but with 3 people on 3 different doses–well, it is a good way to keep Tate’s brain sharp! And by allowing him to set out pills, I am teaching him how to properly dose out medications, so that once he is on his own, he will be a pro at it and it will be just a part of life, not a burden.
After dinner, it is time for round 2 of breathing treatments. We plop down together, neubulizers plugged in ready to go, and watch a cooking show together–we have to turn that TV up really loud to hear over 3 nebulizers running!
This is followed by sanitizing our equipment once again, nasal rinses and sprays, showers, and bed. Because we are all exhausted.
It sounds overwhelming doesn’t it?
There are days it can be, trust me.
When we pack for a trip, it is especially overwhelming to look at one large suitcase holding all our meds for the week. But we have accepted this is what we need to do to live better, fuller, happier, healthier lives.
We have found a routine that works for us. We plan our days, our fun, our activities with medication in hand and around our therapies.
Because at the end of the day, we may have to give up more time than we like to take care of ourselves, but know we are adding days to our lives. Days to make more memories, to have more fun, and to enjoy life.
Ar you suffering from Cystic Fibrosis? Do you care for someone suffering from CF? Do you know someone who has Cystic Fibrosis? If so, let me challenge you to become a CF Champion too!
How? By making a promise to yourself, your loved one, your spouse, your friend, that YOU will NOT give up! The medications and medical plan that have been prescribed to you are tailored to you (or to your loved one). By following that plan, by not giving up, your health will be impacted in a positive way. And that ultimately means your life will be positively impacted as well.
And guess what–I will be here to help you be a CF Champion along the way! lease be sure to share this with any person you know impacted with Cystic Fibrosis. Together there is hope. Together there will be a cure. Together we are champions!