Living with Cystic FIbrosis: Encouragment on how to stay in optimum health by following your treatment plan for Cystic Fibrosis.
My mom used to come home from a ladies’ prayer group and hold my siblings and I a bit tighter, saying how blessed she was to have healthy children.
She had just spent an hour praying with a woman whose daughter was diagnosed with Cystic Fibrosis at birth. At the time this girl was awaiting a lung transplant and every day she survived was a miracle. My heart, just as my mom’s, broke for this sweet girl and her family.
Fast forward 15 years from those prayer meetings and I sat in a doctor’s office being asked if Cystic Fibrosis ran in my family. No. Why?
At this point, I thought I KNEW what Cystic Fibrosis was.
After learning about the sweet girl my mom prayed for, I even did a research study on Cystic Fibrosis in high school that I ended up being awarded a college scholarship. Cystic Fibrosis was a lung disease and my lungs were fine.
Well yes, that is true, CF is mainly a lung disease.
But then my mind started spinning, I did have so many digestive issues and sinus issues. I had frequent nose bleeds, liver issues, and nutritional deficiencies. My blood sugar was erratic at best and I was small in stature and struggled to gain weight my whole life. And even though I knew those issues could be explained by Cystic Fibrosis, I thought I was missing the one key symptom that is found in CF–lung disease.
But in my heart of hearts, I knew that CF was the answer to my 3 decades of unexplained symptoms. And after 2 more years of testing and consulting with doctors across the country, they agreed as well. I did in fact have Cystic Fibrosis.
I cannot exactly explain to you what I felt at the moment of my diagnosis.
A bit of relief to have an answer after so many years of searching for answers, but also fear. I was scared of what my prognosis may be. Everyone around me was stunned. My family had a hard time believing it, some doctors even had a hard time with the diagnosis.
Not to mention, that 6 months after my diagnosis, both my children were diagnosed with CF as well. And let me tell you, this momma knew all along that whatever was plaguing me, my children were showing symptoms of as well. It just never occurred to me it was a life-threatening disease that has no cure.
Before I was diagnosed with Cystic Fibrosis, CF was my nightmare. It was my mom’s nightmare. It was my husband’s nightmare. But NOW, it is NO longer my nightmare. It is my REALITY.
And how can make what once was my nightmare, something positive in my life? How can I turn my pain into a blessing?
When life give you lemons, you make lemonade.
It isn’t just about me telling my story and encouraging other CF families, or raising my children to take care of themselves and to be strong and courageous in spite of their disease—while that is all good and well, it is more than that.
It is about empowering myself.
I accept my disease.
I accept that this is a part of my life and my children’s life.
I face Cystic Fibrosis head-on.
That means, listening to my doctors, communicating with my doctors any changes in my health, taking my medications properly, doing treatments daily, exercising, and eating a healthy, balanced diet. I stay up to date about the latest treatments.
I walk hand in hand together with my children to battle this disease. To stand strong against it.
To smile in spite of the pain.
I don’t struggle to take my mediations.
I want to live as long as I can.
I don’t want to give CF any more power in my life than it already has.
For me, every pill and treatment is a blessing because it is adding days to my life. And after living 30 years with daily bouts of pain and issues, I realize how much taking my medication and following my treatment plan has helped me.
There are still hard days, but they are fewer and farther between.
And for me, that is considered a blessing.