Thursday, February 11, 2010

Stream of Consciousness Post #2

last day of ivs and first day of freedom. hot showers, extra hours, maybe time to stop and smell the flowers.

not roses though. i'm sick of those.

having trouble accepting some of the little things that i'm supposed to take without question. i worry about stuff that doesn't seem to bother anyone else, like what i'll do when i'm suddenly not seeing my cf doctor anymore. feeling kind of like some overgrown adolescent (but then again, who doesn't, really?) because of all this change and my reaction to it. it's almost physical, or i'm sure it would be if there were energy left to have a physical reaction. pages and pages and pages of journal filled with . . . thoughts? questions? whining? i'm not even sure where the deep musings end and the complaining begins anymore. and in the end maybe that's the kind of insight illness give us: the freedom to take ourselves way too seriously.

people all around telling me to just be patient. i want to tell them that i'm the ultimate patient -- 28 years and counting. patience is a virtue, i guess, but lately it seems like patients are just a burden. and i'm so sick of all the waiting: waiting rooms, waiting lists, waiting around, waiting to exhale. i've become a cliche or a sleight of the tongue -- a sick patient who is sick of being patient.

and i know i'm one of the lucky ones.

i'm so lucky to be alive, lucky to have friends and family who support me, lucky to have healthcare, lucky to love my doctor, lucky to have lungs that can choose to work when they feel like it, lucky to have drugs to keep the monsters at bay -- my own personal three-week cootie shot. so very, very lucky to have time left to wait.

it's kind of a thin line between lucky and sucky, when you think about it.

and so tonight i'll keep my vigil, count my blessings, and fall asleep to the whoosh of the oxygen concentrator once again. and tomorrow i'll do more of the same, only different. because each dawn is a new day, and patient's is an underrated state of mind.


  1. piper-
    thank you for your kind comments. they mean so much to me!
    i miss my cf doctor too. i feel like making a "follow up" appointment so they can see how well i am doing post TX, but i know it makes no sense to do that. it's so weird. i worried about not seeing them anymore too.

    it's okay to complain. it's good to vent, and express yourself. it's also good to remember that there are those who have it worse off.

    hang in there! it's so weird that "waiting on the transplant list" feels just like that. waiting.
    i never realized how hard it was to wait. it is so hard.

    i seriously can't wait until you get the call! i'm looking forward to seein how your life changes!

    waiting with ya,

  2. p.s.

    oh yeah, congrats on get off IVs again! enjoy the nice long shower!

  3. Piper you have such a gift of words! I love how you blur the lines of patients and patience! how absolutly fitting!!!
    I can't wait til you get your call. I feel I really relate to you, because I'm just a wee bit older than you...and because I dont have CF I see how I've taken my own 29 years for granted, and not very patiently!
    Keep on keeping on!!!

  4. "a thin line between lucky and sucky" - that's awesome. and true :) I hope you get your call soon.

  5. I also feel lucky. I read to many blogs about others with CF and hoe their time is running out. Let's hope we both get out lungs before we are put in that situation. I am glad to hear you are free. I am stuck to an IV pole for another week.

    Do you know if your transplant center has been doing transplants? It seems like noone I read about is getting a call.