NASA
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Today's Document
Claire Keane
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Love Begins
Fai_Ryy
$LAYYYTER
almost home
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gracie abrams
pixel skylines
Lint Roller? I Barely Know Her
PUT YOUR BEARD IN MY MOUTH
Jules of Nature
#extradirty
EXPECTATIONS
The Stonewall Inn
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TVSTRANGERTHINGS
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@lovelivejustbreathe
HEALTH UPDATE!!!
Cannot believe I made it to this day. Thanks to Trikafta I am experiencing life without constant infection and debilitating GI symptoms. I have so much energy – I never truly realized how bad it was til it was gone. I realize the good times don’t last so I’m taking my time and attempting to live fully in this moment hanging on to this feeling I have today so when it does change I can remember…
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Living Fully: Wisdom, Gratitude, and Self-Discovery
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Self Love and New Beginnings
I tend to write what pains me. But probably equally what I’m grateful for. What’s in my immediate mind. Although I don’t post it for a couple of weeks, so what you all are reading is my past mind. I tend to get it all out and move on from it rather quickly. All my ideas about life and my life experiences that are unique in terms of my traumas from living with a terminal illness and getting a…
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And I Didn’t Think About Life At All
It was one of the best days of my life, a day during which I lived my life and didn’t think about my life at all.” -Jonathan Safran Foer Not gonna lie. I’m an over thinker. But I usually over analyze and think so much about life, the meaning of life, my purpose, and how I can better myself it’s annoying. I’ve been trying to find a freedom within myself to let go of the over thinking about life.…
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My Lungs
A friend of mine was recently reading my blog and wanted to remind me that these transplanted lungs I have been gifted are mine. Something I never truly considered before since they are not my original lungs. The ones I was born with. Still coming to terms with the idea that they are indeed my lungs now. They were also indeed someone else’s before. When I was gifted these lung’s it came with a…
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Throw Back Thursday
To my 8th lungaversary (SIX INCREDIBLE YEARS AGO) right before I was about to turn 30 and pre-covid! Actual post from 9/16/2018. ————- I can’t believe it’s been 8 years since I got another chance to breathe. I’ve fit in so much love and so much life into this second chance I cannot thank my surgeon, doctors, nurses, family and everyone else that made this chance and these adventures possible.…
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Live for Today
This isn’t an inherently positive post about living one day at a time, it’s a little different. There is a beauty in living for today and today only. Tomorrow is never promised but what most don’t realize is that neither is today. A harsh reality and threat that being alive brings. Living for today is something that I had done for some time – my first 20 years of life actually. I had known no…
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2024 Health Update
There has been a recent development in my health. As well as many others with my same cf gene. With the addition of a medication called Trikafta, It is a triple combination precision medicine of three separate drugs (ivacaftor, tezacaftor and elexacaftor). I have been taking it on and off but also having allergic reactions to. So for some time I’ve been unable to tolerate it. I have had very…
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2024 Health Update
There has been a recent development in my health. As well as many others with my same cf gene. With the addition of a medication named Trikafta, It is a triple combination precision medicine of three separate drugs (ivacaftor, tezacaftor and elexacaftor). I have been taking it on and off but also having allergic reactions to. So for some time I’ve been unable to tolerate it. I have had very…
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A Beautiful Privilege
What is life? I think I’ve seen it in my little dog’s eyes. In my family’s love. In my friends support. For a while I thought I saw it in a blue sports car. I know I saw it in snowboarding. I’ve felt it in my ability to breathe. In the ability to run. I’ve heard it in music. In songs that changed my life. I’ve felt it in a hug. I’ve lived it through many, many incredible experiences. I’ve also…
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Why Me?
It’s okay to feel a little broken sometimes. Even if you received the chance of a lifetime. A second chance to live. A second chance to breathe. Something you always dreamed of. When the expectations don’t meet reality. It can hurt. It’s hard to feel anything less than grateful though, even to just merely be alive. But also for the circumstances. I feel incredibly grateful. It’s bittersweet to…
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Cystic Fibrosis Fighter, Cochlear Implant Wearer, Double Lung Transplant Survivor
Thoughts on living and second chances from the heart and brain of someone with a terminal genetic illness who near death was suddenly gifted the ability to hear, breathe, and ultimately live. 1988 cystic fibrosis 2010 double lung transplant 2014 cochlear implant
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A Different Direction
If you’ve been reading my recent blogs you might have noticed that they are a little different than they were a couple years ago. I recently began working harder on my book in the past couple of months than ever after taking 2 years completely away from it. Taking care to dig in and add deeper insight into my feelings and emotions throughout my life, the unfolding of events. To hopefully make it…
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I’m Here For It
I’ve been writing a lot lately. Trying to get my thoughts in order. I apologize if they are wildly disorganized but it’s been helping me a lot. Mostly coming to terms with the bad things life has brought me. As before I tended to focus only on the good. Ignoring the bad even if it meant suppressing it. And thanks to recent events uncovering it for me, I am finally feeling able to address it all…
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All the Feels
The fact that I thought this particular run changed my life reminded me that every time im able to run even if just for 30 seconds is a feeling of astonishment, freedom, and health, but also a feeling of beating the odds that have been stacked against me since birth. So many odds. I got new lungs when my old ones failed, I regained my ability to hear with the help of an implanted device, I…
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Letting Go for Quality of Life
I talk a lot about this topic. I’m talking about letting go of things, people, situations, and emotions that are no longer serving you. Maybe they never have been. Things that clearly aren’t for you in this one, short life. I’ve been thinking a lot about actually listening to how you are treated in any given situation and acting on it, especially how you are treating yourself, because you…
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Thoughts on Thirty-Five
So. I’m 35. This is another day, since I have been so very lucky to have had many, that I could have never imagined. My 35th birthday. 35 years of fighting the symptoms of the same disease and it’s many, many side effects. 35 years of living like tomorrow may never come. 35 times I thought it would be my last birthday because I was so extremely sick or my prognosis was not so good. 35…
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