Monday, November 23, 2009

You Had Me At Hello

I'm just writing tonight to say hi and touch base with the readers and real life friends/family/supporters. Things are going well here. I spent 5-7 extra hours/day on the BiPap than my normal 9 hours of sleeping, for Friday through today, Monday. I'm going to try to keep it up until they repeat my VBG on Wednesday to check my CO2 levels. I hope they go down after all this! If not, I'll be really sad and blue/ angry and red. Ha? Spending this much time on the bipap gives me a lot of time to sleep or think. It's awkward to do most anything else for too long on the biPap. I am typing while on it now, but the weird one-eye-at-a-time vision will get old by the end of this screen shot. I am getting more and more emotionally ready for the transplant, I think that's good. I've started to have some sort of dysfunctional thinking like, "Maybe if I stop swearing, I'll get my lungs tonight!" (bargaining, they call it). More than anything, I want the surgical part to be over so that I can stop worrying about it and thinking of new ways to meditate its reality out of my head and replace it with other visions.

Other than that, my Mom and I are getting along very well despite the fact that all of the days run into each other. We are fighting the boredom with all we have. Every day seems the same to us - exercise, meds, biPap, naps, food, television, an errand or two, an appointment or two . . . et cetera. It's getting boring.

I am still having a hard time doing a lot of things that are easy for people. Showering and the morning routine, for example, takes about an hour no matter how I try. Getting ready for bed, similarly, takes a long time. Getting ready to leave the house is a big to-do. Most things take a lot out of me. Even though I'm bored around here, my days are very full just getting the day done with. And it does take a lot out of me to have people in and out of here visiting me. I love to have so much support, but its getting difficult now that some of my friends and colleagues seem annoyed that I haven't seen them. I know it's been a long haul here (short, actually, compared to a lot of my CF bloggies and their journeys to transplant), but as the weeks go by it doesn't change the fact that

I. Am. Tired.


I feel like 90% of people understand that, and 10% of people are pestering to see me, hear from me, etc., more than I can deal with. I enjoy the emotional support, but the more I feel pressured by someone, the less likely I'm going to ever even call them back. It seems like a clue that they don't really get the enormity of what's going on around here. Heck, I haven't even seen my beloved T-Money in two weeks, I think! I actually got an email yesterday that said, "I've been driving by and it seems like you're always home, can't I come over?" and I wanted to be like,
"Are you a weird stalker or something? If I wanted you over, I'd invite you."

So, I want to say thank you to all of my friends and colleagues that are supportive and wonderful and let me take the lead on our communication, and who read the blog and keep in the loop and send an email or call but don't guilt me into calling back. To everyone else who feels like I'm ignoring them, I'm sorry, but you're sorta right. I'm not ignoring you because I don't love you. I'm ignoring you because I am tired. Every day.



  1. Props for the title of this post, I'll never forget our brush with "the law" when we went to see Jerry McGuire even though we were **gasp** under 17. You thought every usher was about to kick us out. Do you feel as weird as I do about our Cruise obsession now that he's a weirdo?

  2. Have you tried energy drinks? (Sorry, bad joke). I think some new lungs will do the trick. Hopefully soon.

    You amaze me with all you manage to do (even if it seems like not much to you). Getting through the day is a big deal. Posting the occasional Tweet and blog = bonus.

    They're going to replace that picture of the cat in the poster with your photo. Hang in there!
    (Okay, maybe not. I think that cat is a cultural icon, but you might get an honorable mention).

  3. CG,
    None of us understand how it feels to not have the breath to go about the day. Gasping, tired, gasp, panick, drowning, recovering, tired, step, next step, rest. We can only imagine. But we do see what it is doing to you and we are SCARED AS HELL, and we want to help some how. We think that contact is support. We don't understand that contact is a demand. You are a very important person to an awful lot of people. This is testiment to your huge impact on all of us. But we need to step back and understand that these "demands" on your time is not about you, it is about us. This doesn't support you, it just puts more demands on you. We need to back off. We need to understand that your love for us is not compromised, it is not questioned. It is just so hard to see you suffer. But these days will pass with your transplant. Which we pray will come soon.

  4. Awwwwww I miss you too! Always here for you... I promise you I would never do a surprise drop by... ;-)

    Love you,


  5. You are remarkable CG. Keep your priorities straight and conserve your energy for what's important. There are a lot of us out here in Cyberland who are rooting for you. Hope those new lungs come soon.


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