Wednesday, May 6, 2015

By the Book

     During the question and answer session after my speech at the CF Family Retreat, (link to the video of it coming soon, I hope!) one of the audience members suggested I write a book.  I told him that I had been told this before, by my parents, my wife, a few friends, and I always felt like my story was "just another story" and very few people would be interested in reading about the life of a random guy they'd never met.  I felt like those who suggested I put my life down on paper said it because they knew me personally, and my story had significance for them that it would not have for those who didn't.  But my viewpoint on that changed one week ago today.  Following the Q & A, several more people told me that writing the book was something I had to do, and one of the CF clinic doctors mentioned that she gives books to newly diagnosed patients, but that none of them are written by people who have Cystic Fibrosis.  As it turns out, I am the horse's mouth.

     So, now that I have the all important "Who is my audience?" question answered, it's just a matter of making the thoughts in my head appear on the screen.  My sister-in-law asked how I will approach writing the book, and I told her that I view the speech from the retreat as a Slinky.  I need to stretch it out and fill in whatever gaps exist, using not only my own memories, but those of my wife and family as well.  This blog will allow my to put sections of the book "out there" to get feedback and also to keep me motivated.  When it comes to telling my story, this is the first time I've ever felt a sense of urgency.  The sooner I write the book, the sooner I can move forward with a plan to get it into the hands of CFers and their families.

     Without further ado, here is a snippet that will be in book.  It is from the "college student years," and one of the many side stories that I left out of the speech for time considerations.

Dispense As Written

     When the first need to refill a prescription arose while I was at college, I saw firsthand that my future of getting medicine from the on-campus pharmacy would go smoothly.  I had been told it would be good, but taking the short walk from my dorm to Snow Health Center, getting the medicine I needed, and being back in my room within minutes was reassuring nonetheless.  Not long after arriving at school, I needed to refill my enzymes.  I was looking forward to putting on the Freshman 15, and making sure I didn't miss even one does of enzymes would go a long way toward making that happen.  When I picked the bottles up from the pharmacy, I immediately noticed that they were bigger, and a dark, translucent brown color.  The pills themselves were also very different from the Pancrease standard I was used to-- these were like large purple gel-caps.  Though I was confused, I attributed these differences to the fact that I was getting them from a different pharmacy, and that I had recently transitioned my care from Flint to Ann Arbor.  But after a few days of taking these enzymes before every meal, it was clear that my digestive system was not as tolerant of change as I was.  Thankfully, Dr. Simon responded quickly to my call and indicated that he would send a new prescription to Snow Health Center and that this one would be labeled DAW-- "dispense as written."  This phrase was entirely new to me, and he explained that despite the FDA changing the rules and regulations on pancreatic enzyme products, some companies were still able to put these generic (and obviously unreliable) enzymes on the market.  And pharmacies routinely give out generic medicine when it is less expensive than the brand name drug.  But the DAW indication would guarantee that I only got Pancrease from then on.  This was my one and only pothole on an otherwise smooth journey through getting my meds from the pharmacy on Eastern's campus.  Eventually, it became my Cheers, where every employee there knew who I was and would start to process my order the moment I walked in. *Cue music... "You want to go where people know / Meds are all just the same / You want to go where everybody knows your name."  


  1. Ohhhhhhh dear. I had wrote a little tidbit about something to include in your book and I do believe I lost it. 😞I shall try again.

  2. Once you locate it, I will be happy to include it! :)