Friday, April 4, 2014

Shaken, not stirred: the cocktail of life

Cocktail anyone?

My day begins and ends with a cocktail. The kind of cocktail I am talking about keeps me alive.  As my CF has progressed so has the list of “ingredients” in my everyday cocktail.  Just as a mixologist strives to find the right combination of ingredients for the perfect cocktail, so do my pharmacist and doctors strive to find the right combination to fight CF.  I am so thankful for my pharmacist, doctors, and researchers who are continuously exploring new and effective ways to treat, manage, and fight the disease. 

As thankful as I am for each one of those ingredients, it comes with a cost.  Some mornings and nights I would do anything not to have to swallow that cocktail. It’s a constant internal struggle of knowing each one of those pills is working to give me the best life possible, and the mere idea of being bound to that ever evolving and growing cocktail.  

What’s in that cocktail, you say?
Vitamins, Tylenol, Blood clotting pills, Antibiotics, Steroids, Antifungals, Decongestant, Blood pressure pill, Acid Reflux pills, and Enzymes.

Every great life extending pill comes with a cost: insomnia, nausea, dry mouth, sensitivity to light, dizziness, sweating, numbness and tingling in arms, headache, liver damage, kidney damage, the "shakes, "the foggy feeling," and ototoxicity.  Some days, my body doesn’t even feel like my own. 

All I can do is pick myself up, take my cocktail, and be thankful for each day.  Each ingredient is so much more than just a pill. It’s my team of CF mixologists sending out their best to fight for me.  For me.  Wow. I owe so much to my team: literally every breath.  Love to you all!

What’s your cocktail of life?


  1. Well, my cocktail of life is the mojito. Oo!! Let's go get one (or two or three . . . ) together in Tahiti!!

  2. I don't know how else to comment other than anonymous...I don't have any of the other accounts. This is a great blog and I have shared it with a few families that I know who deal with CF. Thank you for your courage and inspiring words! My cocktail of life is reaching out to those in need...I am a wish granter with the Make-A-Wish Foundation and absolutely love being able to make a difference in the lives of these amazing children and their families. Thank you for doing the same for people!

    1. Thank you so much for your comment and thank you so much for what you do for others! Your kindness is impacting so many lives. Check out my latest blog post; it is inspired by people like you. Thank you for reading and sharing: I truly appreciate it!

  3. hi love Jamin you are very pretty! I did this at grandpa Barry's and grandma Linda's house on their tv bye hope to see you soon!