Tuesday, November 21, 2006

Frustration and Relief

And I hope that you are having the time of your life
But think twice, that's my only advice
Come on now…who do you think you are…
bless your soul
You really think you're in control

--Gnarls Barkley (Crazy)

Today I’m both frustrated and relieved at the same time. I’m frustrated because I’m still so exhausted, which means that something must be amiss in my body. I’m frustrated because I know that this is probably going to take another round of intravenous antibiotics, even though it hasn’t been very long since I was out of the hospital.

I’m relieved because I know that for the most part, this is just “part of the deal” of having CF. It’s very unlikely that I’ve picked up something new; this is probably just a rough year for me. I’m relieved that since I placed a call to the doctor’s office yesterday we are already working on a solution for this particular episode—this pulmonary “exasperation” if you will—which includes oral antibiotics at least in the interim.

Still, I’m frustrated. I’m frustrated that I can’t just go ahead and live an uninterrupted life. I don’t like it that I talk on the phone with my doctor and his team more often than I hang out with friends.

Maybe the most frustrating part is that this disease leaves me feeling so out of control. I’m at the mercy of my body’s botched biology. No matter how well I take care of myself or how diligent I am with my meds, my screwy system refuses to meet me halfway and behave itself. I know that there is only so much I can do to keep the CF monster from devouring me.

The rest is up to God, and I’m relieved that it is so. If that were not the case, I’m certain my frustration would overtake me.

I can feel your frustration and I have been there with you lately. The girls were admitted for a day and are now home on I.V. meds. But the COUGH... The wracking cough! Why won't it go away now? Doesn't it realize that I.V. meds are being issued? Step in line little soldiers! But, I have to tell you that recently I had a little revelation. We spend so much time resisting the process... CF does get in the way. The kids miss school. I miss work. It is a total pain. However, Sarah cried when she discovered she had to go in the hospital, so I told her, "You know what? We are going about this all wrong... We need to join hands and skip into the hospital and embrace the process." She, of course, told me that I'm totally weird, but I think we both felt a little better with the shift of consciousness. I have a friend that calls life "The Adventure Bus". I guess CFers are on a serious ride. I'm thinking of you and sending you blessings as it appears The Adventure Bus is stopping to pick you up!
Love and Light,
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