Wife. Blogger. Adventurer. Creative. Youth Pastor. Homemaker. Christian. Dog-mom. Beach bum. Shopping enthusiast. Colorful. Plant lover. Sun-kissed.
These are the words that come to mind when describing my life and who I am.
But there’s a piece of me that is a silent struggle and makes up a large chunk of my being.
I was born to a beautiful family a healthy, happy baby. But I had one hiccup that my parents handled with grace and beauty. That hiccup is cystic fibrosis.
Cystic fibrosis is a genetic disease that creates a salt and water imbalance throughout the body causing the body’s mucus to become thick and sticky. This creates a breeding ground for bacteria, blocks airways in the lungs, and blocks the pancreas from not secreting enzymes and insulin; and without enzymes and insulin, the body can’t digest food or break down sugar, resulting in low nutrients to the body and abnormal blood sugars.
Because of this, I had debilitating issues that most “normal” kids wouldn’t think of growing up.
On a daily basis, I have to do a series of treatments and medication that helps my lungs and body stay the healthiest they possibly can. I take anywhere from 25-35 enzymes to help break down my food to digest and gain the nutrients from it. I do 4-6 breathing treatments a day…some to keep my lungs moist, some to thin the mucus, and some are antibiotics that I inhale to keep infection from brewing. I take 8-12 vitamins and supplements a day to help with bone strength; keep liver enzymes down in order to prevent liver disease; insulin through a pump for diabetes; probiotics to keep the good bacteria in my body in check; and several others for various issues.
It’s never an easy battle to face. I have had several hospitalizations where I would be on IV antibiotics to combat harsh infections; and sometimes even come home with the IV’s and be on them for up to 8 weeks (3-4 per day). My hospitalizations and at-home IV therapy has gotten in the way of ministry, school, work, and every day life. I have had to cancel plans last minute and stay indoors to prevent infections.
But the medications are not the only part of managing cystic fibrosis. Mental health is so important to manage as well. Because (and I believe it goes without saying) staying home or in a hospital and missing out on plans and friends would take a toll on the healthiest person’s mental health. For instance, breaking out in hives the week before prom (BOTH years) is devastating to a teenage girl; as well as, being in the hospital 2 weeks leading up to your WEDDING DAY…I mean, c’mon. But mental health is easier to mange with the right team in your corner. I have an amazing husband, wonderful parents, and a loving family who supports me in every area of my journey. Oh, and an adorable fur baby who doesn’t mind snuggles on days when I feel bad (or any day for that matter).
But cystic fibrosis isn’t all terrible days and medications. I have been given so many opportunities throughout my 25 years with CF. I’ve had the privilege of speaking in front of thousands advocating about a disease that is in dire need of publicity. I have had the chance to share my story so many times. I have been given writing and blogging opportunities. I’ve met some of the most amazing people and CFers who inspire me even to this day. I was able to choose a Make-A-Wish trip and go to New York after I graduated high school. Cystic fibrosis opens the doors for so many incredible opportunities.
So, I take it day-by-day and hour-by-hour and I do the best I can to protect my lungs and my life. I have a strong support system, flexible schedule, room for grace and forgiveness of myself on the days when I don’t do all I should, and the love of Jesus covering me until the day that I am healed and CF has a cure.