As I sit across from one of my doctors at my appointment this last week, I was overcome with the emotional realization that I am not in this alone. As I made light-hearted jokes about the future and talked about the tentative plans ahead, I knew the only reason I got to where I am today wasn't from me fighting CF alone, but from the multitude of doctors, nurses, pharmacists, friends, family members, and complete strangers holding me up, believing in every step of my journey, and always passionately fighting with me for another breath. What an incredibly humbling thing to realize. I wouldn't be here if it weren't for their relentless encouragement, steadfast support, and their commitment to doing everything possible to give me another tomorrow.
To Breathe
The last few months have been filled with endless IV antibiotics, countless pills, doctor visits, hospital stays, tests, blood draws, and the need for unyielding tenacity. The last few months have held some of the most beautiful of moments and some of the most difficult. At times, I thought I'd never feel like me again. That with every setback came the panic and desperation to breathe, just for another day, month, or year: to merely live one more day in the life I love with the people I love.
I still feel that desperation to live, but today it is coupled with celebration. At my appointment last week I had a FEV1(lung function) of 50%: almost double since this past November. I have never worked harder and desperately wished more for that number. To be able to breathe is simply amazing. This is most likely where things will level off, but I will never stop fighting for more.
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The direction and nature CF takes isn't clearly understood, nor can its future be clearly articulated. What we do know is that with every ruthless infection and hit my body takes, it is harder to put the broken and shattered pieces of my health back together. This shell of a body may have been left weaker and its resilience taking a brutal beating, but my determination and will are stronger than ever. For the last 22 weeks (and counting), my body has been inundated continually with powerful cocktails of IV and oral medications in hopes of beating down the relentless drug resistant bacteria and fungus that are trying to steal my vitality, my strength, and my very future. With that said, the time is coming in which the boundaries and limitations of my body without all these drugs needs to be tested. I am filled with such a cacophony of emotions:
Gratefulness, for getting to this point in which I almost feel like me again.
Anxiety, for knowing the future is bound by the destruction of CF and the pain it will cause so many.
Infinite joy, for the relationships that have fed me and brought so much beauty to my life.
Nervousness, in wondering how long it will be before my body will betray me again.
Love, for the endless grace and kindness I have been shown.
Hope, for the possibility of tomorrow.
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I am learning not to allow the past events to fill me with fear, or the unknown of the future to fill me with trepidation, but to live for the beauty that is present in this very moment. CF may be progressively present in my life, but it will not rule by fear. I will breathe bravely: continually renewed by the strength and tenacity that live within, knowing I am never alone in this fight. Love to you all.
Each of our lives is filled with people who pour themselves into us, giving us strength and tenacity to endure whatever our journey may have in store.
Thank them today.
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