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Sunday, January 23, 2011

Truth Be Told

I often find that when I write I find myself leaning into the tendency to write about what is pretty, or nice or polite... not that any of that is necessarily untrue but that the I leave off the harder, harsher darker truths of what balance out this life... and then I find myself wondering.. do you want to share all of that in an online forum.. but then I reflect and realize that I only write the pretty, nice and polite on anonymous pieces of paper that only i can see... so then I go on to acknowledge briefly that I'm not so good with truth.
I was diagnosed with Cystic Fibrosis on 9/1/2009. It really shocked me, but not anyone around me. I was given my genetic mutation, a regimen of treatments, bottles of enzymes (which I am no longer on.. long story), inhalers (of which I already had a collection at home) and orders for blood work, x-rays etc. When Dr. P spoke to me he told me that I had Cystic Fibrosis, and that it was mild.  He said I was fortunate, but that we (my partner and I) should not wait 10 years to climb Macu Pichu after we asked about it. This disease can take a turn on a dime...
I walked away from that conversation with the word mild stuck in my head... eh, I'm mild, I'm a lucky one.. I have been on IV anti-biotics for 75% of the time from 9/1/2009 until today. I have had my gallbladder removed because it was hardened and full of mucous. I have had 2 sinus surgeries and been diagnosed with gastroparesis.. me and my mild CF...but recently I had a moment of clarity... key word here folks, moment... moment.
I went to the neurologist to assess my headaches which are because my trygeminal (sp?) nerve in my head and face is disturbed due to chronic bacterial sinusitis and inflammation that I have sinus headaches almost all the time.. at any rate that is not the entire point of the story. She says to me, "So, you have cystic fibrosis?"-- I reply, "I have mild cystic fibrosis."
She laughed. She laughed out loud. She said, "Tara, I am sorry but you either have Cystic Fibrosis or you do not."
Ok. She's a good doctor. I have Cystic Fibrosis. I like to pretend in my 35 year old fairy tale mind that I don't and that my chronic infections, mucous spewing, sinus bacteria are either coincidental or due to my immunological deficiency...
My partner also has taken to laughing... She says, "Tara, you have CF.. this is normal."

Truth be told. 
I have Cystic Fibrosis. 
I have Cystic Fibrosis... and it scares me sometimes.


Jennifer said...

Tara, just saw your comment on my blog. Thanks! glad you are following us. I'd love to email you, but I don't see anywhere on here to contact you directly. My email is if you want to touch base!

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