My Double Lung Transplant

Sunday, December 7, 2008

The Flip Side to Lung Disease

As always, i was inspired to write this blog while getting ready to step into the shower.

The other day I heard on the radio that people shouldn't worry about gaining weight over the Christmas holidays b/c in actuality, you only gain 1.5 lbs. As i stared at my pale self in the mirror, I reflected on all the crap I've eaten this past week, and decided to step on the scale and see if I could defy the world and what it tells you about eating high caloric stuff.

94 lbs.

HA! Eat it, health nutritionists people! Not a pound, not a roll, not a bulge, not a jiggle. It was then as I realized that I had lung disease to thank for this condition! And it inspired me to blog about the flip side of lung disease and what it has taught me.

1) Lung disease and waiting for transplant has given me a lot of Me Time Bree time. I spend a lot of time with myself - in fact, every waking hour - and I've learned that I can entertain myself greatly, but it's also allowed me to read to an excessively sick amount and as a result, my book collection has grown substantially. One thing university robs you of is the freedom to read your own material of choice, when you want, for how long you want, and if you don't really understand it at some parts, no big deal, b/c you're not going to be quizzed on it at any time in the forseeable future.

I read like a whore. You have no idea. Every waking minute, my nose is buried in a book. I cannot put them down. I am like a sponge. I absolutely love being taken away and so wrapped up in a story that you want to physically bite somone's hand off when they try to touch what you're reading to find out what it is. I love falling in love with someone's story (OUTLANDER) and I love reading about the past (hello Tudor history!). I will mourn the time when I am thrown back into the real world and forced to function like a normal human being. I will be breathing and I will be whole..I won't have time to go off to Never Never Land and live through someone else. I cannot praise books enough b/c they are my essence. If i could not read, I would die. My brain would melt and I would seize to exist.

2) I bake a lot. I've always baked, but now I bake about twice a week, and I'm baking things that I never had to time to bake before. I am expanding my culinary skills and it's marvelous. And I'm eating a lot more too.

3) As stated in point one, lung disease really is just a giant excuse to be lazy. I don't mean it in a bad way, but when you don't have any energy to do squat, you don't really need to justify it. So for now, waiting for transplant is my time to be lazy without excuses and without feeling guilty. I cherish my laziness and my spot on the couch. And i will never forget the long hours i spend on it reading. Like a whore.

4) Being listed for transplant I have met a lot of people like me. A lot of young people specifically. When I got diagnosed I truely beleived I was the only young person who had a lung disease to the extent that I did, and I was therefore completely alone and no one would ever understand me. I would debate what I would tell people, b/c people always comment when they hear you cough. You can only pull the "i'm sick" excuse for so long. After a year, you're not fucking sick anymore, there's something horribly wrong with you! Having a lung disease is one thing, but then when you have a whole other disease on top of it, you have to flip a coin and choose which one you'll tell people about, and which one you'll hide. Now that i've met young people with lung issues and other conditions, I have opened up and seen that I am not alone and that it's ok to be like this. I have met a lot of great sickies whom i love dearly. Even if we can no longer be within 3 feet of eachother:(

5) You learn who your real friends are, the ones who are there for you, who listen to you drone on and on for hours about how shitty you feel, how congested you are, how much phelgm you cough up and how you had to leave their house b/c you had to poo!! (ok maybe I went a little too far) The fact is, they're not grossed out by the fact that you sound like you've got TB or pneumonia. They know you can't help it, yo, and they love you muchly b/c of who you are, and you love them muchly for loving you!

6) Sympathy/Compassion? Not that I ever had any to begin with, b/c in all honesty, I don't. Has my sympathy/compassion for other people grown? Not really. I can't be bothered with normal people who complain about their minor health crap in general. There are exceptions (like my dearies!). My compassion for fellow sick people has a foundation. I will say that. I'm not completely heartless, I do care and I do feel sorry for people, but i'm not going to shower them with sympathy since it won't get anybody anywhere. I don't hand sympathy out like candy. You have to earn it. When you're ill to the extent that the people I have seen are, you learn that they just want to be seen and treated just like everyone else, not some damn sick case!

7) And last but not least (saving the best for last!), the never-happy medium, the always-at-war and the issue-that-will-always-be *sound trumpets* MY SKINNINESS! *cheer*. Sometimes I hate it, sometimes I love it. Some days i feel too thin, the next day my arms are too fat and I look like a fat mole stuffed into a pair of jeans (or so i feel). I know that I'm not. Me, who has eaten 3 out of the 4 dozen gingerbread people I made on Tues; me, who has consumed more chocolate turtles, more cans of coke, more macaroni and cheese than anyone i know...and not an ounce. And i love it. And by god if this changes post transplant I will be really pissed off! But, it may teach me that i need to treat my body like a temple, to eat healthy (i had an apple yesterday, i'm starting) and to not eat crap to the extent that I do. But i will not lie, I will enjoy it for as long as I have it. And i hope that I am always like this. But like i said, there is never a happy medium so we will see!

So that's it. It doesn't matter what I say at all about lung disease, there is no happy medium anywhere. If lung disease were a mental illness, we'd all be bi-polar!

2 comments:

Amy said...

LOL yes we do have to look at the flip side sometimes!!! I love this post :) And dam you for eating like a pig and not gaining!!!! I think of eating and I gain weight now ugh!!!! It was one of my favorite parts of CF...eat like a horse and look like a twig hehe!!

Oh and after tx you can read and read and read, while walking and running on the treadmill since you will be able to do it now :) But since you might want to actually have a life post-tx then yes I would read like a whore and read everything you possibly can!!!!

Cheers my lovie!!!!

<3

Alice said...

Agreed Amy, every time I step on a scale I weigh more. All those years the Dr's thought it's bad digestive health, but screw them now! It was burning calories like crazy cos of not being able to breathe!!! Awesome post. Love the part about true friends too...