Dear Eva

You’ve been gone for a year now but to me, you’re still around. I think about you every time I go for a run. I imagine you pushing me from behind whenever I get too short of breath saying “Keep going! Keep going!”  You’re life was taken from you far too early and it kills me to think about what you would have done with your life if you had the chance.  It kills me to think about your family not having you around. I didn’t even know you very well and this is the impact you had on me. I think you were an amazing young woman and I’m so thankful for so many things you’ve done. By publicizing your feelings, you gave me permission to have the same ones. You made it ok for me to have those feelings and you gave me the courage to publicize mine now. You showed us not only how inspirational you are but what I loved most was that you weren’t afraid to let us know that you were frustrated and angry on the bad days. Thank you for that. I think it’s so important to stay positive but you taught me that it’s ok to have bad days too. You taught me to be thankful of what I have and to not take things for granted. I’ve learnt to take advantage of the life that I have to live. So today I make a promise to you. For whatever it’s worth. From me to you. I promise to live and love every day. I promise to fight harder than I’ve ever fought before. I promise to carry on your legacy. I promise to stay as healthy as I possibly can so I can live to see the moment when CF stands for Cure Found. And I promise to bring on along for the ride. You were a remarkable and inspiring woman Eva and I’m so grateful for everything you gave this world.

Generosity and Beyond

There are few words that can truly express how I feel about a group of people that live in a small town on Vancouver Island called Campbell River.  My eyes fill with tears as I think of the generosity that comes from this group of people. It started with 8 individuals, 28 years ago that shared a common goal that came from somewhere deep in their hearts that few people in the world have. On May 16^th, 1983, one month after I was diagnosed with CF, these individuals came together for their very first meeting. I recently read the minutes that were typed up on an old typewriter from that meeting and based on the last paragraph, you can tell that their goal was clear right from the start.

It reads: " The Black family would like to thank everyone for their terrific support in forming this branch.  We feel any contribution towards the foundation (CCFF) means more research and increase the chances of finding a cure for Kimmy's disease.  It is our most sincere and deepest hope that a cure will soon be found so she can live as full a life as the rest of us".

The quote refers to the Black family and Kimmy (yes they used to call me Kimmy) but the words and thoughts represent all families that have had CF enter their lives.  

A couple weekend ago we celebrated that group of people along with people that joined that group throughout the years that would soon become the Campbell River CF Chapter, which has raised almost two and a half million dollars over the past 25 years. It was an exciting night filled with great speeches that provided information, gratitude and hope. My sister gave one of those speeches and I must say she did an amazing job. My Dad emceed the event and I also must say that he too did an amazing job. I love you both.

Dr. Chilvers who is one of the CF Doctors at BC Children’s Hospital also gave a speech about CF care and research. I learned some pretty exciting things about new treatments and medications that I hope to take advantage of in the next couple years. Hearing about these exciting new therapies made me realize how much the Campbell River CF Chapter has done for me. Without the funds that they’ve raised over the years, I’m sure I wouldn’t be taking certain medications today or doing certain therapies that were discovered because they had the funds available. And that is why my eyes fill with tears when I think about this group of people and what they have done for me personally. Not only do they continue to raise money for CF, they are there to support me whenever I need it. When I was stuck in the hospital a couple years ago, there wasn’t a room filled with more flowers than mine. All from that group of people that I love and adore.  I’ve always considered myself a lucky girl but it’s the support I get from this group of people in Campbell River that makes me feel like the luckiest girl in the whole world.  They have allowed me to achieve the goals that I’ve set for myself. They’ve allowed me to experience the world. They’ve allowed me to breathe.

I like to call this group of people, my angels. Not many people can say they have a group of angels behind them, but lucky for me, I can. Thanks for the last 28 years everyone. And here’s to the next 28.

A reassessment of sorts

Until now I’ve used this blog as an outlet. The purpose has really just been to get out those thoughts that have been wandering around aimlessly in my brain. After reading some VERY exciting news about CF research and chatting with my CF team at my last clinic visit, I reminded myself that this blog is not only for venting purposes, it’s also for story telling, experience sharing and information giving. I think it’s so important for people with any chronic illness to be connected to people who are dealing with the same illness so they can share information on what works for them.

So, my plan is to open the gates to anyone out there who may want to share a piece of information that has helped them.

For this entry I wanted to share a few things. At clinic yesterday, my physio and I got talking about CF care in different countries. She told me that in Scandinavia (I think) they focus their therapy around exercise and activity so much that they now rarely recommend postural drainage on kids… and they’ve seen huge success. Not that Canada doesn’t recommend activity and not that you should abandon all traditional physio methods. I just thought is was so interesting to see the difference in care and the success they’ve seen from one country to the next. I think Canada is very good at balancing new therapies with old ones. For me, it’s important to branch out and try new things, while sticking with the old faithful therapies that work best.

As I start gearing up for our trip to Australia (yes, by the way, in case you don’t know, we’ve taken that beautiful gift we received back in December and GOING TO AUSTRALIA!!!! So excited!), this got me thinking. Why don’t I do my own little research project on how things are done outside of Canada. Australia is after all where hypertonic saline first started. So, my plan is to hopefully pop into see the CF clinic in Sidney and get some tips on what they find works well for most of their patients. If I find anything promising or interesting I'll let you all know!

I also wanted to share something VERY exciting in the research front. Here’s an article my Mom emailed me. It’s pretty amazing and it gave me more hope in finding a cure than I think anything has before.

http://www.cysticfibrosis.ca/assets/files/pdf/BreatheUpdate_Feb2011_eng.pdf

Also, for each blog from now on I hope to add a “Kim's tips” section. Just a little tidbit of information on what I’ve found helpful. So... here's the first one.

Kim's tips:

Today's tip... make a person with CF laugh. I'm not talking just a little giggle. I'm talking LAUGH! Laugh so hard you have to cross your legs. You may be surprised at how much mucous it brings up!