The Twins Prevail

It's been a very long week, but after an inspirational time today at CF Education Day, I felt I wanted to get some of my thoughts out.  I had been looking forward to this day since the flyer arrived in my mailbox.  It was an invitation to see Ana Stenzel give a talk on the power of FIGHTING CF.  I have been in awe of both Ana and Isa since I read their book back in 2007 called "The Power of Two: A Twin Triumph Over Cystic Fibrosis".  They are 39 now, have made a movie titled after the book and are looking for someone to pick it up, submitting it to several venues without any takers so far.  I know that someday, it will happen.  I found this excerpt about the book from a CF website and wanted to share it as well as the link to continue reading it if you are interested. I highly recommend the book if you are interested.
Movie Trailer: http://www.thepoweroftwomovie.com/watch-the-trailer/

http://tinyurl.com/3z5uuo4

"The Power of Two: A Twin Triumph Over Cystic Fibrosis provides Isabel (Isa) Stenzel Byrnes and Anabel (Ana) Stenzel the opportunity to discuss living with Cystic Fibrosis (CF) in the United States.  While there have been many firsthand accounts of living with CF, this book sets itself apart by providing the perspective of twins who are of German (their father) and Japanese (their mother) heritage.  The sisters discuss how they lived three distinct lives: one in the CF community, one in the home with two cultures and one in the world mostly ignorant to the problems and perils of CF. "

Reading the book several years ago, when I was sort of considering getting a lung transplant, really gave me a new vantage point of what it really takes to get through such a tremendous strain on the body.  There is such a fine line of whether you are sick enough to get on the list and healthy enough to endure it.  I remember when I was the in the room the moment the doc told Leenda that she was a candidate and needed to get on the list as soon as possible months before her first transplant.  You are never ready to hear those words.  To think of oneself as "end stage" is  very scary.  We went through that together, though, as well as all the other stuff that took place during her TWO double lung transplants.  She was such a strong and courageous person, I just don't know if I even have that sort of strength left in me to fight that fight! 


Ana gave 10 points on HOW to Fight CF today and I jotted down some notes that I will share.  
1. Support... Of course, this is number #1, numero uno... and what she meant is support of your family and close, loved ones.  If you don't have that, then it makes it very difficult to endure the peaks and valley's associated with this disease.  

2. Appetite... and she was not just talking about our voracious hunger and appetite for food, which everyone knows I have... My 6 foot 2 inch friend is always kidding me, saying that my UNDER five foot body can eat HER under the table ANY time.. She is right.... But, what Ana was referring to was APPETITE for LIFE as well as good nutrition.  I know I have that!  There's no dust settling under my feet... ugh, just on my coffee table. .... shhhh!

3. Support of peers... everyone has their own struggles and obstacles to get through life, this just happens to be ours and if we can try to be as "normal" as our peers and let them in our circle, it will be easier... not using unnecessary energy to have secrecy about CF.


4. Normalcy... in life.. in general... a career, social life, etc. We have pulmonary function ailments, not brain function, well she doesn't know SOME of us... LOL!


5. Education... the more we know about the disease, the better we can take care of ourselves.  Awareness 
equals acceptance. 


6. CF Community... that is CF clinic and 4N nursing staff for me. They are like a second family and I feel very comfortable around them, knowing that they are there for me.  I saw some nurses and staff that were clearly ON THEIR DAY OFF at the seminar... THAT is infallible CARE in my eyes.. I got hugs from them all! Of course, my awesome doctor was there, as well!  He wouldn't miss it as he is instrumental in getting these seminars lined up, I am sure.


7. Self Expression... Each of us is on our own journey and should not be clumped into a group of "Cystics" or "CFer's".  We are each unique and have our own attributes and characteristics. We are not defined by this disease, but we do all have it.  Communication is a major key when it comes to this issue....Be your own person and "assertive" not "difficult". There is a fine line there, too, you know!  I have been told that I am one of the most COMPLIANT patients they know.  Well, they didn't know me in my early 20's and let's just say, one of my doctors "labeled" me as his "non compliant" patient... it all went down hill from there. I proved him RIGHT!  LOL!  Luckily, I got on the right track and realized that I would be putting myself in the ground real soon had I not woken up to reality.


8.  Self Reliance... to be independent and live a long life, we have to take it into our own hands to DECIDE and DETERMINE whether we want to live or not.  We need to grasp all facets and embrace them. Of course, we can call on others for help, but we FIRST need to rely on ourselves to take care the best we can. No one should have to have someone else nagging them to do their treatments to "stay alive".  Develop that WILL TO LIVE and THRIVE! Be accountable for your life and actions.


9. Acceptance... Yes.. CF SUCKs and YES, sometimes I HATE CF, but it also is a gift.  God CHOSE us! 
We are special. Most, normal, healthy people go through life trying to be special... we, special folks go through life trying to be NORMAL! Isn't that funny! OWN it and accept it... don't let the hatred and "ugly green monster" take over your every thought. I feel blessed to know all the people I have known and live this life.  It's hard, but it's mine and I like hard work.  Ana said that "CF is not for lazy people"!  She got that right!


10. Faith... LAST, but certainly not least.. I probably would have put it first, but that is the order she had it. 
I can honestly say that I have been down to a place where if it weren't for my faith, I would not be here today.  There is nothing out there more powerful!  Life is TOUGH!!!  If it's not, then YOU are not trying hard enough.  Everyone has their own journey to get through and figure out.  If you don't have struggles in your life, just go to the Dell Children's Hospital or any wing in a hospital that has children in it... not just CF. It will pull at your heart strings and make you ever so thankful that YOU or your children are happy, healthy and live a normal life.  

Ana left us with a quote from another Cyster.. the four D's to living life with CF:   "Desire, Determination, Dedication and Discipline!"  Hallelujah!  You said that right!  Now that I got that off my chest, I can go lie down and take a "breather". TIRED!
http://tinyurl.com/3eco8f6

If any of my friends want to borrow my book... locally, just let me know.  Ana signed it today for me! 
Now ... go make yourself a great day!  Love, love... LOVE!