The Scoreboard

There are times when I feel like CF has made choices for me instead of me making my own decisions. When this happens, I am not a happy camper.

Going to concerts is something James and I absolutely love to do. It connects us. It makes us happy. It’s the way we have a fun. So naturally I get a little pissy when my CF prevents me from going to a show.

There have been four amazing shows that I couldn’t attend because my health was just not cooperating! Last October I was in hospital on IV antibiotics but still determined to go to a show James and I had bought tickets for months before. Not only that, we were going with friends that I rarely get to see and who I miss all the time.

What happens? I got a fever (of course) and the docs were not comfortable with me leaving the hospital. I get it. It’s for my own good. There are clearly much bigger problems in the world. What am I complaining about?? There will be other concerts and I’ll see my amazing friends another time. But when the resident says, “maybe you could just listen to the music on your ipod instead”, it just ticks me off even more. Thanks so much Mister Resident man but James and I both know that listening to live music is WAY better than listening to music through head phones. Thanks for the tip though.

Anyway a couple weeks ago, I had a not so great clinic visit resulting in the need to go on IV antibiotics again. Okay. No problem. I’ve been through this tons of times and I’d much rather go through two weeks of IV antibiotics than continue to cough and feel breathless. But, when I looked at the calendar and saw that my IV course was going to coincide with an upcoming show that James and I had tickets for, I thought to myself - I can’t miss another show because I’m on IV! So, I decided I was going. Yes I am, with or without my IV supplies. I…. Am…. Going…. The weekend arrived and doubts began to drift in my head when I got a fever and felt like absolute crap. But luckily, I started to feel a bit better by Monday and found my determination start to build again.

So off I went the night of the concert, IV pole and supplies in hand, to a show that I quite simply was not going to miss out on because of another lung infection. So, giddyup.

While I waited next to my IV pole for James to park the car, I received some of the strangest looks I’ve ever experienced. People wondering: Why I brought a coat rack to downtown Vancouver? Shouldn’t I be in the hospital? What kind of crazy person was I? But really, the show was so worth it. Josh Tillman (Father John Misty) played an acoustic set and was wonderful. He has one of my very favorite voices, next to Dallas Green, Justin Vernon, Afie Jurvanen, Chelsea Wakelyn, Janis Joplin, Etta James, Natalie Maines, Allison Crowe, Whitney Sloan and of course, James Wood. His voice is the kind that reaches out and coats your soul with smooth smooth comfort and delight. He makes every note count and he warbles in such an unpretentious way. Plus, he ain’t bad to look at either. (Cheesy wink placed here).

The stage was outrageous. Fully equipped with a coat rack, a side table with 2 wine glasses and a bottle of red wine, an apparatus that produced some sort of, I’m guessing, aromatherapy mist (?), a bunny, along with the usual music paraphernalia. This guy had such great stage presence. He was intellectually facetious, calm, poised, and comical (very comical actually, which was revealed by a question and answer period with the audience, wacky banter between songs and an iphone bit where he stood behind a life size iphone screen to evidently help us be more in the moment… you had to be there I guess). He sang honestly and soulfully using his clever and satirical lyrics giving the audience pure enjoyment.

James and I had an absolutely amazing time despite the strange looks, odd comments and confused fellow audience members.

Kim 1, CF 0. A story to remember.

http://www.youtube.com/watch?v=asl5RDA6804

Creating Creations

Well for the past year or so, while doing physio, resting, waiting for meds or attempting to get motivated to exercise, I've started making jewelry! Keeping everything I've made would simply be selfish... and not agreeable to my bank account... so I'm selling. Some of you may have seen the bracelet and earring set I did for the CF Golf tournament in June which, to my utter surprise, raised about $100 for CF!!! Yay! Don't worry, you won't have to spend nearly that much. Supplies/stones can cost as low as $10.

For family and friends and whomever else would like a piece of jewelry made gently and with love, please email me at: kimwood81@gmail.com or facebook me.

I also can take special orders and tailor the piece to whatever you choose. You can even come to the bead shop with me and pick stuff out yourself! 

Here are some pic's. I've named them to make "ordering" easier.

Pocahontas

Lucy

Diana

Carrie

Birdies

Lolita

Alia

Lola

Peacock

Tree

Dangle didi's

Circle Lucy

Genevieve

Fiona's Feathers

Alia's feathers

Olive's opal bracelet

Olive's opal necklace

Winnifred

Katie

Crystal

Sophia

Leaf

Blue Sparrow

Moon

Amongst Greatness

For the past week I’ve been waiting for words to pop into my head. Words that will allow me to express what certain events in the past month have meant to me. And they just haven’t come to me. I guess that means… there are no words.

On June 22^nd I was surrounded by a ton of people that I respect and value, particularly for the support they’ve shown towards the CF cause. The Rod Brind’Amour Golf Classic raises a huge amount of money (for the small town of Campbell River!) for Cystic Fibrosis Canada to use for research grants, clinical care, advocacy and more. It’s a fundraiser that has grown immensely over the years and luckily we’ve had the continued support of several very important people - Rod Brind’Amour especially.  Every year I’m honoured to publicly thank Rod for coming to the event and for everything he does for us. Rod means a lot to me and has truly become a big brother figure over the years. This year I wanted to show him, and everyone at the event, what a typical day looks like for me so he could see why it’s so important for me to have someone in my life who inspires and motivates me. So, James and I created a video that can be seen here if you’re interested. 
http://www.crcf.ca/news/thank-you-video

Rod is someone who gives me a ton of motivation, which, if you watch the video, is key when living with Cystic Fibrosis.

For the past two years we’ve also had the privilege of having Ryan Nugent-Hopkins attend our event and I just can’t say enough good things about him. Ryan’s a young hockey star who happens to have a heart of gold. You can tell his head’s in the right place and (lucky for us) his heart is as well. He’s kind, generous, and focused on what’s important in life. I’ve had the pleasure of meeting his mother, Debbie, who’s genuinely kind-hearted and has clearly taught Ryan the importance of giving. It’s such an honour having him and his family join our event.

That night I was also presented with the Summerhayes Award which completely shocked me. It’s a national award that is presented to an individual with CF who’s demonstrated an exceptional commitment to the CF cause. Although I’m thrilled to receive this award, I certainly don’t feel I’ve done much to deserve it. Having said that, I was truly honoured to accept it and I’m filled with such gratitude each time I look at it sitting on my mantel.

On the very same day of the golf tournament, the “Gear up for CF” bike ride began; An epic ride from Vancouver to Banff over 9 days. Cyclists rode anywhere between 100 to 190 km’s per day and a LOT of those kilometers were up HUGE hills! Krista Houston is one of my very best friends who I cherish very much. She’s a friend who I can turn to when I’m having a really bad day. She’s a friend who knows what PFT’s are and why they’re important to keep track of. She knows what it means when I have to go on IV antibiotics. And she can tell when I’m too sick to do the things I love to do with her. She’s also a friend who decided to take part in this years “Gear up for CF”.  So, driving up to Banff to greet her at the finish line was an easy decision for James and I to make.

Krista was riding with an amazing group of people. There were people with CF, people with CF who’ve had double lung transplants (who are doing GREAT by the way!), parents of people with CF, people who’ve unfortunately lost loved ones to CF and people who just wanted to be a part of something remarkable.

The CF community has always had this amazing spirit of camaraderie. A kinship with one important goal in mind… to find a cure or control for Cystic Fibrosis. Being amongst this type of solidarity gives you feelings of gratitude, fulfillment, goodwill, friendship and purpose. It reminded me why people volunteer for CF.

At the finish line I was reunited with a dear friend who I met at one of the very last CF camps when we were about 11 and 12 years old. We wrote letters to each other for a few years, but as teenagers do, got caught up in our own lives and lost touch. Being able to reunite with this friend was incredible to say the least. I could have chatted with her all night. It was as if our connection had never been lost and we were able to pick up where we left off all those years ago.

What a fabulous day in Banff! I was able to reconnect with an old friend, welcome another friend as she completed 1200 km’s (on a bicycle!), discover that parents of children with CF hug others with CF with the same love and caring nurture, and bask in the joy of these people all connected to CF. Inspiration bloomed as we celebrated the riders accomplishments.

Some of you know that it’s not recommended for people with CF to be in close proximity to each other because we can share bugs that are harmful to one another. This makes it incredibly difficult to connect with others who are going through or have been through similar experiences in dealing with CF. If you’ve ever had to get through anything difficult in life, you know it is a huge help to talk to someone who’s been there, who can truly empathize. As you may imagine, it’s the same with living with CF. Connecting with others with CF means that you are not alone. And it’s just not the same when it’s on the phone or online. Being present amongst a group of people that have one thing in common is remarkable. It was the first time in a long while that I didn’t feel alone with my disease. I so look forward to the day we can hug each other and not worry about our CF bugs.

I am so very proud to be a part of the CF community and look forward to many more CF events. But perhaps, someday soon, CF won’t be the reason we get together for events. Perhaps CF will simply be what we had in common and a cure for CF will be, in fact, what brings us together in the future.

I'll leave this post with a quote that I absolutely love. A quote that reminds me to do things in life with purpose and meaning.

“Choose to Inhale, do not breath to exist” – Mattie Stepanek

Meds, Nebs & Tablets

You flow down my throat, course through my veins, and pour into my lungs. I revolve my life around your dose times. I make numerous trips to the pharmacy to the point where they now call me by name and ask how my husband is doing. I take 14 of you in the morning, 7 of you at lunch, 8 of you at dinner, and 11 of you at night. Being able to swallow you whole for the first time is one of my most vivid childhood memories. You are the first thing I pack and unpack when on vacation. I have dreams of diving into a sea of enzyme capsules, flying through the haze of inhaled medicinal mist, or panicking when I’ve forgotten to bring enough of you to my dreamland holiday. Sometimes you do your job, and sometimes it’s not enough. Sometimes you make me throw up and sometimes you make me feel better. You allow me to function. You allow me to breathe. You allow me to live. But on the day when I’ll need just a few of you, maybe even just one of you to keep me alive, to suppress or perhaps even cure this disease, I will celebrate in a HUGE way. Until that day comes, I’ll continue to swallow, inhale and inject you into my body in hopes of getting through another day.

My rainbow of meds