A day to remember

Today I am lucky enough to celebrate my 25^th birthday. That’s right, 25 years, a quarter century, half way to a mid life crisis.

As my friends and family will attest, I’m not normally one to make a fuss over birthdays. However, as a Cystic Fibrosis patient I can’t help but feel exceptionally lucky to be alive and well today.

Over the last year I have had several ups and downs. I have continued to battle reoccurring lung infections and have been on the brink of hospitalization several times. I have also gotten to know some other Cystic Fibrosis patients who haven’t been as lucky as me. In particular, Eva Markvoort has been a constant inspiration to me. I first learned about Eva’s battle when I met her Aunt’s Annette and Geri at a Cystic Fibrosis Fundraiser in late November. They told me of their incredible niece and her inspirational fight against Cystic Fibrosis.

Eva is a young CF patient who lives in Vancouver B.C. In October of 2006 Eva was told by her team of doctors that she was dying and needed a double lung transplant. Ever the optimist, Eva decided to fight back against the disease. She was determined to receive the transplant and continue her life. On October 23rd 2007, with her lung function at nearly 10 per cent, Eva received her new lungs.

After a long and arduous recovery period, Eva had gotten another crack at life. She moved out with her friends, enrolled in university and began making the most of each day she had with family and friends. Life was good – she had beaten her disease.

However, nearly a-year-and-a-half after her double lung transplant, Eva began experiencing the symptoms of chronic rejection. She is once again on the donor list and is waiting for another pair of lungs. The question is – will they come in time?

Eva is a remarkable woman who personifies everything that is important in life: love, friendship, family and hope.

At 26 she is dying…..for the second time. Despite this reality, she remains strong and positive.

Eva has inspired me to continue my fight against Cystic Fibrosis and to forge on with the Friends For Life Foundation. I am forever grateful to her for the lessons she has taught me and the ways in which she has inspired me.

Today, as I celebrate my 25 birthday, I will take time to remember those who have not been so lucky. Those brave CF patients who have lost or who are losing their battles. There is no doubt in my mind that I am lucky.

I am determined to live beyond my “life expectancy” of 37-years and it is my hope that other CF patients will be afforded the same fate. I am also determined to continue raising funds and awareness for this terrible disease until the day that CF stands for “cure found”.

Those of you who would like to follow Eva’s inspiring fight can do so at:

http://65redroses.livejournal.com

Two Become One

As many of you may know, for the last year and a half I have published a blog entitled "Painted Rust: Surviving Cystic Fibrosis". For me, the postings were an attempt to cope with the disease. "Painted Rust" featured tales of courage, determination, will power, friendship and love. If you haven't already checked it out, you can do so at: http://www.paintedrust.blogspot.com/

Anyone who has ever written a blog knows that the most difficult part is trying to post interesting and engaging musings on a frequent basis. This was especially true for me. Between my career, my friendships, relationship and FFL, there just wasn't any time left in the day to write.

Then it hit me - why not kill two birds with one stone and combine "Painted Rust" with the "FFL Blogspot"? After all, keeping one blog interesting and up-to-date is much easier than keeping two!

So from here on in "Painted Rust" and the "FFL Blogspot" will be one-in-the-same. Be sure to check it out frequently. And, as I said in my very first blog post:

Live, laugh, and love – it’s the only way to exist.

For the sake of nostalgia, I thought I would include my very first "Painted Rust" post, originally written in September of 2008...enjoy!

Hey everyone, and welcome to Painted Rust. The postings that follow represent my attempt to cope with Cystic Fibrosis.

Living with a potentially fatal disease means living with constant emotional strain. The deterioration of health is often followed by the deterioration of will, and, in turn, a sense of powerlessness that cannot be described - only experienced.

Such a devastating disease is intrinsically intertwined with pain and struggle. However, those living with CF learn to embrace the positives while disregarding the negatives. Cystic Fibrosis, therefore, serves as a reminder to live life to its fullest. To cherish the time we have with friends, family and loved ones.

Selfishly, I created this blog for my own personal benefit. My sanity depends on it. My hope is that these postings will provide me with a means of expression. A forum with which to share my frustrations, struggles, pains and victories. Yes, this blog is for me.

But it is also for you: the reader. If nothing else, I hope that these writings enlighten and educate. Cystic Fibrosis is a disease that is plagued by both ambiguity and misunderstanding. I urge you, the reader, to seek out more information about CF. Educate yourself, get involved, and make a difference.

Most importantly; get the message. Yes, CF represents negativity. But it also represents all that is precious in life. Accept these stories for what they are: tales of courage, determination, will power, friendship and love. My hope is that each one of you takes something away from these writings. Acknowledge the negativity in your own life, but never let it limit your potential. Live, laugh, and love – it’s the only way to exist.

A baloon is not just a baloon

Last Saturday - as Steve, Stefanie and I prepared for FFL's first ever volunteer appreciation dinner - I had an epiphany. I found myself standing next to a helium tank at 9:30 on a Saturday morning, inflating pink and silver branded FFL balloons. Not one or two - but hundreds.

After fifteen or twenty minutes of the tedious task, I quickly realized how a simple undertaking - like blowing up baloons - requires a huge ammount of time and effort.

As my raw fingers began to turn red, I also realized that this was the first time in nearly half a decade that I had ever blown up a balloon in preparation for an FFL event. It got me thinking about the importance of volunteers. More specifically, those volunteers who take on the most time consuming, thankless tasks without ever complaining or asking for gratitude. These are the people who make each FFL event what it is. Whether its promoting, decorating, securing donations, selling raffle tickets, or blowing up balloons; our volunteers are the backbone of every event that we put on.

And with this comes an omission. Each year, the chaos associated with managing an event intrudes on every factet of my life. From managing entertainment, negotiating contracts, securing sponsorship and selling tickets; holding a large-scale charity fundraiser literally becomes a second job. Caught amongst the chaos, I often fail to recognize those who play such a vital role in execution of our events.

The bottom line is this:

A baloon is not just a baloon - it is a symbol of the dedication and commitment of a core group of supporters who have stuck with us through thick and thin.

Thank you all so much for making FFL what it is today. We will never be able to thank you enough for the countless hours that you invest in our cause.

From all of us at FFL....

Thank you!