My Two Favorite Dorks

My Two Favorite Dorks

Sunday, August 17, 2014

Disease Change



Disease changes you. But how?

I think sometimes from the perspective of this limbo I'm in - between my former "well" self and my future new and improved self - about how life has changed. It really is a lot for my brain to grasp sometimes. My "well" self, even my fairly sick "well" self, seems far, far away.

At the same time, as much as I tend to be a person with a lot of forward momentum (I prefer that term right now to calling myself a "positive person"), it's hard to let myself spend too much time fantasizing about the things my new life may bring. I am too much of a pragmatist to not know that my life with new lungs may also be filled with challenges, and at the very least I will have to go through some difficult things on the road getting there.

The Comforts of Disease

I wrote a couple of months back about some of the comforts of having lived an entire life with this disease - a life that you get so used to that the routines become comforting in a way. But that has changed: the sicker I've become, the less and less comforting and more and more arduous these routines have become. I've never had a harder time with vesting, boiling my nebs, wanting to skip things I shouldn't. I have not been as diligent as I might have been. (Side note, if my port does turn out to be infected, I will partly blame myself for feeling like I could have taken better care of it these last few weeks.)

As compliant and diligent and zen of a person with CF that I have been until now, I'm fucking sick of it.

The Ways I've Changed

Without further ado, I present my mental list in writing now for your reading enjoyment of all the ways that CF has changed me.
  1. The biggest thing has to be the physical limitations that come with any end-stage lung disease - I don't want to spend a lot of time on this because you all probably already have a good idea of the ways it has affected me. The things I love the most that have been taken from me are yoga, bike riding, hiking, and other exercise.

    Sub out the Bud Light for an NA beer and the TV remote for the Roku controller and this is just about right.
  2. I've become a TV-addicted, junk-food-loving home body. Partly because of the trouble of going out - hauling around oxygen, being started at in public, coughing in public, trying to avoid coughing so much/seeming sick/out of breath in public. And partly because my energy is limited. But since I've been listed it's gotten really bad. I don't want to be far from home when the call comes - I want to have the maximum amount of time to get things together for the hospital. And so, on to the next episode of Pretty Little Liars on Netflix.
  3. The hardest thing for my conscience to come to terms with has been the almost total surrender of my commitment to living a "green" life. When I think of all the trash from my medication shipments, port needle changes and medical procedures among other things, it makes me sick. I just hate it.


    But there's more than that. I stopped composting because it's too much work to keep up with. I buy things at the store in small, disposable containers because they are easier to grab for a snack and to take on my daily trips to Durham. I get things - a lot of things - shipped to my house instead of going out to stores. I idle through every possible drive through instead of going in places. Convenience by necessity. I try not to be too hard on myself, and I'd like to think that there will be a day when things will change back to how they were, but part of me really hates myself for becoming one of the people I used to deride.
  4. CF has made me more selfish than I've ever been. I have to do what's best for me, take time for me, don't push myself too much. In ways this is nice because I have been able to focus on keeping myself as healthy as possible for transplant. Also, it makes the things I do make time for outside of my disease all the more special. But come on, it's totally against my nature to be self-absorbed. I make a good effort to keep up with those I'm closest to, but there is so much I'm missing out on, and people/things I'm no longer able to keep up with.

  5. I have become a far less interesting person to be around, to socialize with. It sounds cruel, but #1 (having a lot of health issues) + #2 (not doing many interesting things) + #3 (wrestling with the person CF has made me become) + #4 (self-absorbed, even though it's by necessity) does not a good casual conversationalist make. My "news" usually consists of my latest medical adventure. (P.S. Thank you to all of my friends who continue to invite me out and want to see me regardless of this! It is a true test of friendship in my mind.) Also, some people don't want to really tell you what's going on in their lives because they don't want to "burden" you. Well, I think that's a load of crap. Bring it in, it's about all I've got to distract myself these days!
  6. I have gone from "backseat driver" to mere "helpful navigating passenger" with my health management. Since switching to Duke, I have had to get to know a whole new group of people. I was accustomed to how everything was at UNC, and used to running the show a lot of the time. But from day one, I knew that to be successful at Duke I would have to play by their rules. This, to say the least, has been a struggle at times. But I think that my proactive patient self is getting pretty good at knowing when there is flexibility and when I just have to deal with it. It's a work in progress.
  7. I just read over what I've written here thinking I was finished when I realized that this list of change would not be complete without me mentioning the physical changes of end-stage lung disease. I am as close as I've ever been to the skinny, barrel-chested, rounded-shoulder, little pot bellied "typical cystic" image that I have managed to avoid for most of my life. My skin is pale, my lips are constantly chapped, I pee when I cough, my menstrual periods are barely there, the grossest-looking shit comes out of my nose and the stuff from my lungs isn't any better.
So there you have it, a selection of things that have been keeping my brain company while we (brain and I) continue to deal with a life that could drastically change with the ringing of a phone. And by the way, remember when I said that when I got listed, my brain was sort of prepared to wait for either a day (short wait) or a month (long wait)? Well now that it has been longer than a month, it is starting to feel like it will never come. Instead of an increasing chance, it seems less and less.

I suspect I may not get another call until I'm able to improve my LAS score - which basically means that I have to get sicker/worse. I want my time to come. But at the same time I continue to be relatively patient and to have faith in the system: while I wait with a low LAS score, those much sicker than I am are receiving organs when their health situation is more critical, as it should be. If that ever becomes my situation, I will rely on that same patience, understanding, honesty and integrity from others. That makes it a lot easier.


1 comment:

  1. Sending you love. One day, one hour, one breath. Be at peace with fighting one challenge at a time. The composting you can dive back into, with an open heart, once you kick ass on the whole getting new lungs thing. For me, on a smaller scale: I can't wean off meds and lose weight and keep my house clean and do a new job. I chose the two most important things for this month, and promised myself that I'd come back to the others when the time is right. One day, the time will be right.

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