The other day I got an invitation in the mail; it was from my CF Center. The invitation was for a Patient Education Night. I used to go to these at the University of Utah all the time--I loved getting all the free samples and vendor stuff. This is only the second one I've heard of in this area since we moved here and I was unable to attend the first. I was especially excited when I noticed who the Keynote Speaker was--Isabel Stenzel Byrnes.
Isabel Stenzel Byrnes and her twin sister co-authored a book entitled The Power of Two: Twin Triumph Over Cystic Fibrosis. Both her and her sister received double lung transplants a couple years ago and I'd read about their story on the internet. Isabel's topic is one I could really use right now, "Finding the Power to Fight CF." I was so excited--that is until I read the fine print.
At the bottom of the invitation in eensy weensy type is the following disclaimer: We ask that patients with MRSA and/or B Cepacia do not attend. For some reason this has hit me sooo hard. I've become one of THOSE cfers. An outcast. It's not enough that my medical charts and hospital bands freely advertise the fact that I have MRSA and that my hospital room door is plastered with enough contact precaution information to scare the bejeebies out of any potential visitor or even passer-by for that matter. But now even among misfits, I'm a misfit! (Shout-out to Rudolph and the Island of Misfit Toys dwellers.) This stinks. I mean really stinks.
I guess (I'm kinda thinking out loud here) this bothers me because I've known for a long time that b. cepacia is one bacteria cfers never want to get. It's bad. Once you get it, it's like turning cf on to hyper-drive. No healthy cfer wants to be anywhere near someone cultured with cepacia. Well, I guess you can add MRSA to that list too. I might as well be walking around with a scarlet M on my chest.
You would think after my MRSA debacle of 2009, I would have figured this out on my own. MRSA is bad. For heavens sake, I've been on non-stop antibiotics ever since picking up this lovely staph bacteria. But denial is powerful. Until I saw it in print, I could make excuses for my body's bad behavior.
So my reality check has thrown me off for the past few days and I'm sure that the prednisone isn't helping the situation either. Somehow I need to recreate my space in denial-land so I can keep moving forward and feel hopeful. Somehow I need to make that scarlet M a badge of honor instead of a mark of weakness. It may take me a little while longer to make the transformation, but I'm working on it. Still wish I could go to the meeting...