Wednesday, December 2, 2009

You Can't Hurry Lungs

Nope, you'll just have to wait. And wait. And wait.

Now before I get blasted for being way overdramatic (another special talent of mine, I totally admit), I do want to say that I KNOW I haven't been waiting all that long by transplant standards. A couple of months is nothing compared to one to two year waits so many people experience. I totally get that and I'd like to say that I know my situation is so much better and that I'm top of the list and that I'm lucky enough to still be able to exercise and live life and not just be confined to a hospital bed without my puppy or my home or my couch or good food and I'm not hooked up to a vent or even bipap and sometimes I can go hours or half the day without sticking a cannula up my nose and yesterday I walked my dog and today I'm doing some aerobics/strength training and tomorrow I have gyrotonics and maybe somewhere in there I'll fit in my friend's bday party tonight and be social and put on a smile to look like the generally happy woman that I am and dress up to look like the healthy woman that I am not. I'd like to say all of this and be able to add that I know I'm damn lucky and I'm not complaining.

Except that I am. Complaining, that is.

The past couple of days have brought a new diagnosis for me: pulmonary osteoarthropy. Not such a big deal, I guess, except that it causes severe joint inflammation and pain.


Pain is something I've always felt like I could just kind of shrug off. In 28 years I've never once called my doctor because of pain alone, never considered it to be a big problem in the grander scheme of things. I'm "sick" often enough as it is -- if I started calling the clinic every time something hurt, I think my "healthy" days would be cut in half, and I don't want that. I don't want to feel like that. And then this wonderful femme de la vie cystique made an offhanded comment that just kinda sorta maybe changed my entire life. "I used to just grin and bear it through pain, but now I find that I just don't have the energy to live like that." No energy to devote to pretending that pain doesn't exist. No energy to waste on sucking it up when there's so much that can be done about something as simple as pain. At 28 I have mastered the art of genuinely having fun despite pain, but I haven't ever really learned how to help myself live without it. Yeah, I know, just call me a late bloomer.

So I called my doctor, got my diagnosis, and am now back on a high prednisone taper. And you know what? It's working. I no longer cringe to stand up, or hobble around like and 80 year old, or skip my nightly writing/drawing sessions because my wrists and elbows are way too inflammed to help me express myself -- so that my brain remains inflammed as well -- and yesterday I even got down on the floor to play with my puppy for a little while without wincing. Oh yeah, and coughing/CPT/exercise (that holy trinity of CF maintenance)? So. Much. Easier.

Life is all about the little victories right now.

Anyway, I guess I'm complaining. I mean, if I ever were to complain now would probably be a pretty decent time to do it, since I had to repeat an arterial blood gas test yesterday b/c of an administrative error and another friend of mine is having to jump through a million hoops to get relisted because of his chronic rejection and I think someone I've really come to like and admire for her spunk and honesty may have had a dry run yesterday at my center and right now I'm just feeling a little discouraged at the process and at the fact that even on the pred and the azli I seem to be showing signs of an increased cough again, sort of that deep rumble in the pit of your stomach/lungs/soul that tells you the mucus is tasting grosser and the color is just a little off and whoops, was that just a little pleural pain or is that damn left lung collapsing on itself again (because I am, after all, a whole week out of IVs at this point). I guess I'm complaining because I went to get a glass of juice to take my nightly meds yesterday (at 2 am, thank you prednisone) and I actually started crying just a little at the thought of doing this to my body AGAIN -- of adding more chemicals and more side effects and more life-saving everyday miracles that I know I need but that sometimes just make things so damn difficult. I guess I'm complaining given the fact that I've now used no less than three curse words in my normally family-friendly blog.

It might be that all the waiting and the sickness is finally wearing on me just a little bit. It might be that I just need to admit to myself that this has been a REALLY rough year so that I can accept that and move on with it. It might be that I've gotten a little bit worse at sucking it up over the past 12 months or so. Or it might be the fact that two nights ago I messed up and added xopenex to my HTS neb cup, so that my treatment actually went xopenex-DNase-CPT-xopenex-moment of total frustration-HTS-Azli, and then last night I managed to change up the pattern a little by putting NOTHING in my HTS neb cup so that my treatment went more like xopenex-DNase-CPT-3 mins of blissfully unaware nebbing of nothing-more frustration-HTS-Azli. It might be any one or all of those factors, but I guess I am complaining. And maybe, like the lyrics to the old Bird's song (or the Bible) says, there is in fact a time and a purpose to do everything, even complain.

But right now I'm more hung up on a different set of lyrics that just seem oh-so-appropriate. Because how many heartaches must I stand, before I find the lungs to let me live again? And right now the only thing, that keeps me hanging on, when I feel my strength, oh it's almost gone, I remember mama said . . .

You can't hurry love. I mean lungs.


  1. you are definitely allowed to complain! I'm usually at it in the shower lol!!

    I hope they come soon for you because I want to do a day in Philly in May with Tina and Shawn and you have to be there :)

  2. You have the right to complain! I know I take full advantage of it :) Hope you continue to be nearly pain-free, cause we all have a little bit of pain that no medication can touch!

  3. Carry on with the complaints Cyster!

    We're here to read 'em, and for some say, yeah, I hear you, I know what you're saying, yup done that too, I can totally relate.

    Here's hoping the wait isn't much longer. :)

  4. Complain all you want! That is what we are all here for. Also, whether you wait a day, a month, a year...the waiting is very hard. Hang in there!

  5. Waiting is the hardest. Even during the recovery, when your body hurts and your emotions are all over the place... the waiting was by far worse. Cry, rant, complain... do what you need to do to get through this time... Hope it isn't much longer!!

  6. Feel free to complain. Go on a total rant if you need to!

    Just know that the right lungs are going to make their way to you at the right time...

  7. :) I hope the pain is better. I am clearly a bit slow on my blog comments, but as you know, December has been a hard month. I'm thinking about you and those new lungs!