Today was a pretty normal day. I got up, did treatments, went to work, worked excessively long hours (as first year attorneys at NY firms typically do), and then came home with just enough time to relax for an hour or so and then get in all my treatments before midnight so I could go back to bed. Not that every day is like that - promise I do have a social life - but that's a pretty typical weekday schedule for me.
But now tonight, with all my treatments for the day behind me, while I'm feeling good after finishing IVs, after having walked home from work on a lovely city night that felt more like September than muggy August, and with my 43% still lingering in the air around me like a protective aura...tonight I'm finding myself sitting around thinking about the maybes in my life right now. Not the typical CF maybes - the ones we all live with day to day: maybe I'll get sick, maybe I shouldn't go out again tonight, maybe I won't be able to make it through the night without a coughing fit - nope, none of that. These are the really, really good kind.
Maybe this new Aztreonam will keep working so well for me.
Maybe I'll be able to go another 3 month (3 whole months!!) without doing more IVs.
Maybe 43% is my new baseline.
Maybe I've finally hit a point again where I can have some control over my health.
Maybe I'll make it to 30 without a transplant.
Maybe I'll meet the love of my life and he won't mind that I have this deadly disease, sleep with O2 most nights, and have semi-failing organs.
Maybe my friends and family will be able to stop worrying.
Maybe I'll live to be 40...even 50...even older...
It's all kinda overwhelming. To be honest I'm not used to thinking about all this because I tend to take life as it comes and to focus really hard on doing whatever I can in the moment. That's why it's so important to me to work, even though "maybe" I could be healthier longer if I slowed it down. I would rather live my life now, the way I love it, than hedge my bets too much and be overly cautious in the hopes of sustaining myself into a lukewarm future. And "maybe" that's morbid or immature, but it's true.
Still I'm not beyond a few daydreams, even at midnight on a random Wednesday night. So here's to the maybe, here and now.
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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Please email me suggestions, thoughts, comments, or criticism. Seriously, I love hearing from you guys!
Send all emails to:
matteroflifeandbreath@gmail.com
matteroflifeandbreath@gmail.com
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I like the maybe list!!!! Here's to maybe's and fullfilling them!!!!! **cheers**
ReplyDeleteNow get some sleep haha!!!
<3
I hope 43% is your new baseline.. that would be awesome!
ReplyDeleteDo you mind if I link your blog to mine??
Yay - please do Christy! And I would love to link yours to mine as well!
ReplyDeleteI stumbled on your blog from another. My husband had CF...he lived each day to its potential and my life is better because he was in it. Keep enjoying your life! Keep living it to the full! Be blessed by God!
ReplyDelete