Tuesday, November 17, 2009

Updates, Streams of Consciousness, and Open Letter to All You Peeps- OH MY!

Hey everyone, So I've been out of the hospital about a week and a half. That seems crazy to write and I even had to say to CysticMommy, "Really only a week and a half?" - so much and yet, nothing at all has really happened. Here are the deets:

The first weekend home, one of my oldest friends C-viddie^ made the long journey from our hometown to see me. This was only one day after I got out of being in the hospital for a month, so he was thrown right into the world of IV meds, nap-taking, BiPap wearing, and generally energy-less activities. Even so, we boldly went to see Where the Wild Things Are, which I really enjoyed! It is right up my drama-teacher-ally and I love the book. It was a puppetty-muppetty good time. But exhausting!! The rest of the weekend was quiet and we had a good time. He is one of my closest pals and I felt very thankful to have him come see me before my transplant. I canNOT wait to see him after.

Then next week I was able to stop my IVs because it had been 30 days straight, plus the 30 days prior that had only ended in September. Time to give the bod a break! Sadly, my Pulmonary Function Tests (PFTs) had not improved from the day I entered the hospital on 10/12. That really disappointed me. My FEV1 is 15% still, even after the month of meds and all. I am trying not to be too disappointed in this, and realized that the name of the game is to stay as healthy as I am now until I get my transplant.

I also started Pulmonary Rehab and I love it! I am doing all sorts of exercises with a trainer who is helping me learn how to breathe appropriate with such a little amount of lung capacity. I have retained a lot of the strength from before my hospitalization, in some areas like my legs. In other areas like my arms, chest, and abdominal muscles ("the breathing muscles"). I am learning to fight my ever growing instinct to breathe really shallowly. So yadda yadda yadda, I'm trying to get my abs of steel back and I've been approved to work on my buns of steel on my own time. Jackie Warner would be happy.

This past weekend, I had another oldest friend, M-Lobby^, come visit me. We made a great dance video, and watched an obscene amount of Bravo on television. We thought that our activities of sleeping in late, eating toasted cheese sandwiches a mother made, and eating chocolate while watching stupid television and occasionally talking about high school gossip and boys, was not altogether that different than what we have ever done together. So that's good. Nothin's really changed. M-Lobby has offered to come here after my lungs are here. So I look forward to that.

My Muzzy (CysticMommy) and I are having a really great time. Every morning I awaken to the sounds of my Muzz on the treadmill. I believe she does this only to be able to gloat over me until I, later in the day, exercise. Then, we usually have breakfast. Muzz does an amazing job of changing up the breakfast options to increase the likelihood that I will ever eat breakfast. Then it's meds, chest p.t., exercise, bipap-nap, meds, eat, daily guest, get ready for bed, sleep. In between that we have lots of cat-related comedy and doctor's appointments and prescription filling and high CMommy and CGal fun.

And that's how the days go. We lose track of the dates really easily and didn't realize that "OH MY! Thanksgiving is NEXT WEEK!" until today.

That's how it goes around here.

Still waiting for lungs! One month on the list, as of tomorrow!

Thanks to everyone for your thoughts and prayers and kindness and support. It means a lot to me. Especially you bloggies and twitter-readers - I never knew how supported I could feel by other CFers that I have never "met" that I yet feel that I now know.

Goodnight and more soon, maybe even a stream-of-consciousness post, or a poem!!

Love, CG


  1. Thanks for the update!!
    Cheers to more good breakfast and kitty fun!!


  2. I can't believe it has been a month! That went fast haha!!!

    So glad you are out and enjoying yourself CG!!!!!!!

  3. Always thinking about you CG :) Keep up the good work with rehab and your fresh new pink airbags with be here in no time!


  4. So glad you're getting so many visitors. And my vote for next time is: a poem.

  5. Great to read whatever you write.



Thanks for commenting! Your comment will be posted ! -CG