the purpose

After a year of thought, and reading other CFers blogs and stories, I finally decided to start my own blog to educate, entertain and inspire on a bigger level then just my immediate family, friends and collegues.  I’m going to share my life story, past and present, living with Cystic Fibrosis (CF), as well as keep those reading informed about research, fundraising, and challenges the CF community is facing.

I’m not the “average” CFer (if that even exists) and far from the normal human so expect to hear some off the wall shit, unbelievable drama, and some inspirational goodness.  I am a rebel, don’t like to follow rules, hate medication of all kinds, can’t stand hospitals, won’t turn my face to a challenge and love to “keep it real.”  Needless to say, candy coating is not happening here.  This is my real life.

“Til Death Do Us Part” is the common vow shared at marriage.  For me, it is how I look at the medical description of CF being “terminal.”  I am not a statistic.  I am not living to the median age of survival, which happens to be 37.  I am here on this planet, living the full life, experiencing the world’s greatness, with CF as my sidekick.  If CF is terminal, then 'Til Death Do Us Part.

Cystic Fibrosis (CF) is a genetic “terminal” illness in which the body creates unusually thick sticky mucus that affects a variety of organs, but mainly the lungs and digestive track.  I always had beyond healthy lungs, better than those who didn’t have CF, but my digestive track was always a challenge.  I grew up inhaling numerous medications, hypertonic saline, and who knows what else to break down and reduce the mucus in my lungs.  Everyday I was choking down stool softeners, laxatives and mineral oil to regulate my bowels and counterbalance the digestive enzymes.  At the end of the day, PT.  That is the relentless pounding on the CFers lungs while they lay in 20 different positions from face down - ass up to flat on their back.  It helps loosen the sticky mucus so that the patient can hack and spit it out in a cup.  How my life has changed since then.

CFers have quite a bit of other challenges that come up while caring for their bodies.  Distention of the belly due to malnutrition (I don’t know how many times I’ve been asked if I’m pregnant), poor weight gain, inconsistent eating habits, chronic coughing and spewing of phlegm that would stop a semi-truck, CF Related Diabetes (CFRD), dental and hearing problems from horrendous amounts of antibiotics, fertility issues, arthritis, liver disease, bone disease, sinusitis….the list reads like an infomercial for the latest depression medication.  And so be it, quite depressing when read like a list. 

I hate to refer to other CF patients as “average” because I know for a fact NONE of us are average, but for the purpose of explaining my own level of CF, I am going to use the word.  The average CFer takes numerous pills in a day, several breathing treatments, undergoes a variety of physical therapy treatments and visits the dr. on a regular basis.  I am not that CFer. 

I am a 33 year young CF patient who has managed to defy all the rules, regulations, suggestions and ideas of every Dr., book, study, and medication.  I live my life by my rules, by my body talking, by my day to day, by the grace of the sun, moon and stars.  I believe in holistic health care, alternative medicine and eating FOOD, not packaged goods.  I've lived on the edge and almost fell off numerous times, not to mention an attempt to jump.  I don't press my views or beliefs on anyone and I don't encourage anyone to do anything they don't feel is right for them.  There will be plenty of my life  story you may not agree with and many things will surely get your panties in twist, but understand, I'm sharing everything so that others can learn from my experiences and see how much I've achieved and overcome along with living with CF.

WARNING: Be aware if your are sensitive to topics such as drugs (the illegal kind) and profanity, I have vulgar language and write in detailed description.  I will be mindful and keep it to a minimum but sometimes "fu$$" is the best word to use.