My Two Favorite Dorks

My Two Favorite Dorks

Sunday, June 15, 2014

The Comfort of Disease

It might sound strange to you that of all my CF clinic appointments over the years - and even as my health has taken a nose dive over the last six months - I almost always leave the clinic feeling positive. And it's only now that I'm realizing why.

Yes, I love my doctor - that cannot be understated in this equation. But I have now come to see my clinic routine as another way that CF "challenges" have, over the years, actually become comforts to me.

Say It Ain't So!

It's a strange realization. But it also makes perfect sense in an 'evolve or die' sort of way. I don't think it is humanly possible to go through life with a demanding chronic disease and not find some way to cope with it so that it doesn't break you. Let alone keeping a positive attitude.

Many of these things that I sort of loathe - boiling my nebs, vesting, filling my pill box every week, keeping on my antibiotic schedules, rinsing my sinuses morning and night, seeing all of my doctors at UNC, having to exercise to feel halfway normal, my nightly ritual of soothing my nasal passage with un-petroleum jelly - will go away with transplant. (Lord knows the pill box filling will not!) But that also means letting go of the comfort I have come to get from all of it.

Onward and Upward

And not only that, but if all goes well, new lungs will not only allow me to not live the life of a sick person but to become part of the world of normal people. ("Normies" as fellow cystic Josh Mogren would say.) I could work again! Return to my active social life (without worry of akward coughing or peeing moments!) Go for a bike ride on the greenway! Visit my family without five bags of medical stuff! And travel without oxygen, without the guilt of always leaving my vest behind, without having to think about how I'm going to sterilize my nebs in a hotel room. That. Would. Be. Awesome.

I think that you all can understand that while all of that change is all very exciting it is also incredibly terrifying. Living with CF lungs is all I have ever known - at least it feels that way now.

I have thought a lot about how transplant forces you to give up control - to relinquish your body to the transplant surgeons and staff in those first weeks before you are (god willing) able to go home and begin to care for yourself again. And how I must rely on Duke's guidance and teaching about this whole new disease I will acquire (the figurative "disease" of transplant.) But giving up control and giving up comforts are two different things, both of which I need to work on.

Maybe I will be well served now to try to start seeing my CF tasks as what they really are - chores, endless chores that only become more difficult and less productive as time goes on. Because let's face it. My life kind of sucks right now. In the words of my friend who came to visit yesterday, "This isn't you, sitting around, hooked up something." Now is the time when it's okay to get fed-up, because hope is on the horizon. Now is the time to let myself get excited about living again.

Photo credits: Sun,; Evolution,; Chore lady,; L,

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