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!

Love

Over the past few weeks I’ve been tempted to slap myself silly on several occasions. Last weekend I had the pleasure of going to a fundraiser concert that honoured Eva Markvoort and raised funds for CF. Eva had CF and received a lung transplant back in 2007. This process was brilliantly captured through the truly amazing documentary, “65_RedRoses” which has been hugely successful.  Sadly Eva died from chronic rejection last March. The concert was absolutely incredible and inspiring. There was so much love in the room you could practically feel it coursing through your veins. It was unbelievable. Although I only had a few encounters with Eva in the halls of Children’s Hospital back when we were kids and St. Paul’s Hospital as we both waited for our noses to be flushed out… I grew to know that she was a person that appreciated the finest things in life like feeling the wind on your face on a sunny day while gazing at the beautiful mountains that BC is known for.  She influenced millions of people and that concert was a perfect example of the legacy that she has left behind. Being there reminded me how important it is to grab life by the balls and do the things that you want to do because it can be snatched away from you so fast! I mean snap out of it Kim!!! Since when are you so negative! Since when have you allowed CF or diabetes control you! I've been lucky enough to have been able to accomplish the goals that I had set for myself so why stop now. When you’re surrounded by unconditional love and support by family and friends it’s almost impossible not to succeed. After my last post I was blown away by the support that I received from friends that I hadn’t seen in years. Not only has my family reassured me that they will be by my side through every bump in the road (as they always have) but people who I work with, friends who I rarely see have offered their support as well. I’m completely astounded at the support I’ve received. I feel so fortunate to first of all, have lived long enough and to have stayed healthy enough to achieve the goals that I’ve set for myself. CF care has come a long way but obviously not far enough. There are still so many people that don’t have the chance to fulfill their dreams. I still have that chance. And I’m so thankful that I do. So thank you to everyone who has reached out his or her hand to offer support. Thank you doesn’t even graze the surface of my gratitude. Today I leave you with these words. A little reminder to appreciate what you have. Smile, Laugh, Live, Breathe, Dance, Dream and most of all LOVE. As Eva always said... Love, Love, Love.

Life

My thoughts this week surround a question James and I have been struggling with for the past year and a half. This question feels like a 200lbs weight just hanging out on my heart. Children are everything that is beautiful in this world and can be everything stressful in this world. I have never allowed my situation to control the big decisions I’ve made in my life. Never. Aside from specifically choosing where I live to accommodate my sinus’ and avoiding certain countries and cities to travel in, CF has never stopped me from doing anything really. This is the first time it’s really made me think twice or three or four times about what to do. Choosing to bring a person into this world has to be one of the most exciting decisions anyone can make. For me, I just feel bogged down with people telling me how hard it’s going to be. I know it will be hard, I know it will test our patience, I know it will test my relationships (specifically my marriage), I know I’m putting myself at risk. But, I also know that although my days would not only be filled with sleepless nights and a crying baby along with the daily struggles of CF, but my days would also be filled with what I can only imagine as pure happiness and joy that can’t be found anywhere else. Having quite possibly THE most supportive husband and THE most supportive family, why not! To be honest, I would be a good Mom and James would be a really good Dad. Is that enough to balance out the hardship that comes with children? Is it ok to have your child watch Mom go through a lung transplant? Is it ok for a child to loose a Mom? God forbid. My reality is so different from others and ya I know it could change and I know instead of dying from CF I could actually just get hit by a bus tomorrow (God forbid again) and all of this worrying would have just been a waste of time. But this is my reality and bringing a child into the pure shittyness of CF is something that I am really struggling with. But is that really a reason NOT to have a child? You know I AM healthy and I have done a DAMN good job of taking care of myself and ya it’s A LOT of work but I do it and I get through it because I have no other choice. So who says I can’t do it! Look at what I’ve been through for fuck sakes and look at the fact that I’ve gotten through it! So who says I can’t do it! Nobody really. There are just so many flashing warning signs that jump up at me screaming warning, warning, warning as I take my first step into the idea of parenthood.  I’m so down about this and it really just makes me want to scream, why does everything have to be so hard for me!

Alright enough feeling sorry for myself. I just need support. I know I’ll regret not at least trying. I know I will. Taking the parenthood experience away from not only myself, but from James too feels like a punch in the gut. Which tells me… to go for it. But how do you know you’ll be able to cope?

Fuck you CF. Fuck you for being so controlling and selfish. Happy finish I know. Sorry. I'm a bit negative today.

Between my lungs

Ok so I’ve actually been wanting to blog for a few weeks now but was feeling too flustered by the many topics that have been swimming around in my head. So I decided today that I’m just going to purge a little here and hope that it comes out in a way that makes sense. This blog is about different feelings, thoughts and emotions that I’ve had. It may not flow or have a beginning, middle and an end. They’re just thoughts that need to come out. And might I add… I am putting these thoughts out there for whoever to read even though I’ve never actually shared some of these thoughts with anyone. The word vulnerability comes to mind here. Anyway, here we go.

There have been so many moments in the past few weeks where I’ve felt so overwhelmed by these strong emotions that seem to be flowing through me.  

Sometimes I feel so much love towards the people that are in my life I just can’t bear it.

Recently I read from someone completely unknown to me that life is about balance. A balance of easy and difficult. It scares me how quickly things can change from good to bad and I find this sometimes clouds my outlook. To this day, 2 years, 3 months, 17 days and about 19 hours after the scariest moment in my life so far, my heart STILL sinks into my gut when I get a phone call from a number I don’t recognize when James is not with me. It’s unbelievable how your brain will remember an experience and bring it to the forefront of your head in the blink of an eye. And with one word, relaxation overcomes those fears and I again feel like the luckiest person in the world.

But, at the same time I can’t help but feel completely terrified of the possible future I have. This is always reinforced after hearing about someone who is facing being put on the lung transplant list because their lungs are giving out caused by the same disease that I have.

At this moment I have to take a step back. Go for a walk, take a deep breath and realize that these two things are so easy to take for granted.

I’ve been noticing the pure beauty and joy in the world lately and am quickly flooded with emotions of contentment, relief and good fortune.  Everyday I think about people who’ve had their lives taken away from them far too early and begin to thank my luck stars that I’m still here… able to run, smile, laugh, breathe and love the people around me. But at the same time, I’m petrified of that being taken away from me. I’m then reminded of the importance of living everyday to it’s fullest. As cliché as that sounds. 

Between my lungs is a warm, bright, glow that allows me to smile every moment I’m reminded of how much love I have.  With whatever future that may be mine, easy or difficult, there’s no way I’ll forget these moments in life.

I can’t remember where I heard this but it’s something I’ve been gaining some strength from… “There is no force on this earth more powerful than the will to live.”

Not much else to say.

Beautiful Gifts

 I believe that the universe works in mysterious ways. I believe that if you want something bad enough (in some, but not all cases) it will somehow, sometime happen. 

 A couple weeks ago, James received a bit of an odd phone call. It was from a travel agent from the flight centre in downtown Vancouver saying we had an anonymous gift for he and I to fly almost anywhere in the world. The skeptic in me thought there must be a catch because it was too good to be true. A few days later, we went to the flight centre and discovered there actually were no strings attached… no catch… no scam. We were free to travel to wherever our hearts desired! Are you kidding me!? AMAZING! I was literally speechless sitting there in the travel centre with tears in my eyes. This was after a morning filled with the harsh reminders of the downfalls of having CF followed by a good old bathtub meltdown.  Suffice it to say, this surprising and remarkable piece of good news had spectacular timing.

Since then James and I have enjoyed just thinking about the possibilities. I’m still completely blown away by this incredibly generous gift and wanted to share this news to let people know that the pure goodness in the world still exists!

I consider James and I to be incredibly lucky people and I believe certain people have come into our lives for certain reasons. Whether they’ve provided support, taught us what strength means and how to use it, how to be patient, how to appreciate the little joys in life or have provided us with opportunity to travel freely! The words thank you can’t possibly begin to express our gratitude and appreciation towards those people, in particular to that person who gave us this opportunity. But, thank you will just have to do… so to whoever you are, THANK YOU! Thank you Thank you Thank you Thank you!