Okay, so I tried really hard to make the whole "if I don't tell anyone I'm back from Turkey then I won't actually have to BE back from Turkey" theory work. I mean, I tried really, really hard. Because we all know that if you don't blog it, it doesn't happen, right? Maybe? Pretty please?
Sigh.
Alright fine, I'm home. Actually I got back on the 10th, so I've been home for a while. And I know that officially makes me, like, the worst blogger ever, but I swear I haven't just been sitting around the house neglecting you guys. In fact, I've made some major changes:
1) I left my job.
Yep, no joke, I finally bit the bullet and admitted that being on call 24/7 in a high-stress law firm isn't the best career choice for me at this point in my life, despite the fact that I love it. So I took disability, but not before I lined up a volunteer position 3 days a week for 5 hours a day at a great non-profit, where I can use my legal skills and hopefully develop some new talents and actually work for a cause I believe in. It was a really hard change, but I'm not second guessing my decision. It was time, and this is right, and I'm actually kind of proud of myself for taking the initiative and finding a new way to stay challenged and occupied that still gives me the time and schedule I need to take care of my health. Okay, okay, enough tooting my own horn, but I have to feel positive about this on some level, or else it just comes down to the fact that I left a job I love. Not that I'm trying to be a Pollyanna about the whole thing, but it's as good a transition as I could have hoped for. Stay tuned for more updates and possible new developments . . . because you can never have too many graduate degrees!
2) I am due to be officially listed for transplant in mid August, after we cover a couple more bumps in the road.
Not much to say about that right now, but it's a little overwhelming. Some of my doctors have theorized that I could be transplanted pretty quickly b/c of my height, so that's kind of crazy. New lungs by Christmas, anyone?
3) I'm back on IVs for the 5th time in 2009, as if to validate the above decisions.
Yeah, I know, these infections are out of control. Believe me, you're preaching to the choir here! I came back from Turkey after all that fun and exercise with fevers and a cruddy sounding left lung, so it was time to go back on. The good news is that I'm doing it all from home, and although my fevers haven't entirely gone away yet, I still feel better than I did when I first got back. The other big development here is that I've made my peace (as much as I can or ever will, I'm sure) with the fact that these continued infections aren't caused by something I'm doing "wrong." And believe it or not, that's actually a scary concept for me, because I'd love to believe that there's something I'm just missing somehow that would be a quick fix. But there's not, or if there is I can't keep killing myself mentally trying to figure it out right now, so I'm just going to keep pushing back as hard as I can. And try and cut myself a little slack.
4) Speaking of quick fixes, remember all those weird symptoms and heart arrhythmias I was having before Turkey (and to some extent during Turkey, and after Turkey)? Well, drumroll please . . .
Low. Potassium.
Yeah, potassium. As in, that stuff in bananas. As in, an electrolyte that CFers are naturally prone to get a little low on from time to time. And this was apparently my time. Big time.
I'm in the process of getting the stuff back up to normal right now, taking these GIGANTIC pills to supplement the potassium in my diet and eating so many bananas there's a real danger of a shortage in lower Manhattan. (Sidenote: you know when a CFer calls the pills huge that they are truly HUGE. I swallow 6 MT-20s with every meal no problem and I can barely take one of these things without gagging. I kid you not.)
And that's about all the change I can handle writing about right now, although it is not (surprisingly) a complete list of everything going on in my life right now. Then again, if I could fit a complete list of my life into a single blog entry I'd probably be pretty boring. And I promise to be back soon with some more updates and maybe even some pics from Turkey if I can get around to uploading them all. I promise they're worth waiting for though, particularly the one of my mom and the spitting camel.
In the meantime, I suggest everyone out there eat a banana. Or five.
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.
Want to Contact Me?
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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Piper, sorry you had to leave your job. I know how much you loved it based on your previous posts. Hopefully this will allow you to get as healthy and strong as possible before tx. And yes, despite our best efforts sometimes we just cannot control what CF wants to do. Welcome back and enjoy your new schedule and best of luck with the whole tx process.
ReplyDeleteKevin
Welcome back!!! I hope you love your new position at the non-profit. I don't think there is anything more satisfying than volunteering.
ReplyDeleteI had no idea banana pills were that big...that's crazy!!!
I hope you get your lungs soon so you can begin the next chapter in the awesome book called Piper!
Ronnie
So glad you're back!
ReplyDeleteAnd while I'm so sorry you had to leave your job, the non-profit situation sounds like about the best compromise you could ask for, so I'll keep my toes crossed that works out.
I hear you on the whole, preferring to believe that there's some glaring screw-up on your part rather than just accepting the nature of the best, if you will, but hopefully any anxiety/bummer over that will be at least neutralized by not feeling quite as compelled to beat yourself up and stress out about what you are or are not doing.
Hope you had a fabulous vacation! I've finally caved and registered/posted on cf2chat (instead of just lurking) so I'll hopefully see you around over there too! :o)
Glad to hear you are back! Hope you had a good trip. I'm really sorry about the whole job issue. I've totally been there...it sounds like the non-profit is an awesome opportunity for you.
ReplyDelete*hugs*
Welcome back!!! Sorry about your job, but congrats on the non-profit position. I loved working for non-profit (learned a lot)!
ReplyDeleteI'm excited for you being listed on the transplant list, even though it seems a little overwhelming. I thought the same thing about thinking I could better my health by stopping something else (like working, etc.) But there really wasn't anything I could do. I will pray that you have a complete peace about it by the time you are listed. It's exciting!!
I had to take those gigantic Potassium pills a few months ago. And us CFers are pretty good at taking pills, but like you said, those things are HUGE!! Good luck!!!
Well it looks like my eating a banana every day might actually be beneficial to me...who'd a thunk it!!!!!
ReplyDeleteWelcome back!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We all missed you here in bloggy land! Those are quite the life changes and I am sure they were not easy decisions. But the Piper I know will take things in stride, even if she comes across a few rocks (or boulders) and has to re-right herself :)
Much love and hugs girl!
I am completely kicking myself right now that I didn't put two and two together and suggest potassium as a possible cause for your...how to put it politely...jitters?
ReplyDeleteMy potassium has been F'd up for YEARS and no amount of horse pills or bananas has gotten me quite back to right. Probably not what you want to hear right now, huh?
Anyway, glad you're back, glad you had a great trip, glad you were able to do a little soul-searching and arrive at some pretty healthy conclusions about your job, your mental health, and how to move forward in a new direction.
Onward and upward!
Welcome home. I am excited that you're going to be doing some not for profit work, that sounds very cool. As for the potassium - interesting. I get heart jitters occasionally that I have been ignoring (yeah, I know, probably not the best idea, but I can only handle so much health trouble at a time, as I am sure you understand), but maybe I will bring that up at my next appointment.
ReplyDeleteThat's what I forgot at the store today - bananas! :) But seriously, I'm glad you're home. I'm also very glad to hear that you've traded your crazy hours for something that will hopefully be as rewarding if not more! I know what a hard decision that was to make. Oh, and hope you are feeling better soon from whatever the heck is going on!
ReplyDeletelaura
Wow that's a lot of news!! I bet leaving your job was a huge thing, but it sounds like you have a perfect job lined up (if you have time I would still love to chat about job opportunities in NYC).
ReplyDeleteI hope that your are feeling better and that things are looking up. I can't wait to hear about your trip!
Take care,
Lisa