Tuesday, March 30, 2010


Inspiration can come is so many ways. But the biggest inspiration in my life is Eva Markvoort. A little history: Eva had CF and lived in Vancouver, BC Canada. At the age of 23 she recieved a double lung transplant. During the process, the waiting, the surgery, the recovery, and post tx life she was the subject of a documentary called 65 Red Roses. She also has a blog with the same name that is followed by thousands of people across the world. In October of last year I got to go to BC with my friend and see the film and also meet Eva. She is the first post-tx CFer that I have met. At that time she had recently been diagnosed with chronic rejection. She had to use oxygen frequently and had moved back home. Shortly after that she was re-listed for a second double lung transplant.

I have followed her blog for a long time. It is so eloquent and her personality comes through loud and clear. I wish I was as good a writer. Eva passed away a few days ago. She had been in the hospital for about 2 months and was actually told a month ago that she only had a few days left to live. She held on for another month in desperate need of those new lungs. They didn't come in time for her. Tomorrow would have been her 26th birthday. She was 2 years younger than me.

Eva was the most alive person I've ever met. Even being so sick she was so passionate about life, love, her family....everything. How can it be that such a person is gone? How can it be that the fire she had has died? I never doubted that Eva would get her transplant because it was Eva! There are very few people on this earth as deserving as she was. I feel so priveledged to have called her my friend. I find myself crying for her sometimes because I just can't imagine the world without her. It hasn't set in yet, and I don't want it to. When that happens then it will be all that much more real. A part of me is glad that she can breathe now, and dance, and run. She is with all the others that have gone ahead. I hope she gave Jenn a big hug for me. She is watching over all of us who are still here. Part of me is comforted by that, by the fact that I have another Guardian. But a bigger part of me is selfish. I want her here, even sick at least she would be here. I could check her blog and read one of her magnificent poems. She could get those lungs and when she's recovered I could go visit her.

But that won't happen. I plan on going to her service when I find out when it is. I want to hug her family and tell them what she means to me. I want to cry with them and share with them. I want them to know that they are in my thoughts. I want to be with others who have been cut just as deep as me by this. I want my Eva.

Saturday, March 27, 2010


Breathe easy now cyster.

Wednesday, March 24, 2010


Forgive me if I don't post much in the near future. I'm getting moved in with J so I am busy packing, moving stuff, and cleaning. We brought the cat over the other day and that has been an adventure. She hates new places to begin with, but to top it off there is another cat here so there is major friction on that front.

I brought all of my meds and supplies here last night so I don't have to do the treatment juggle. That will be nice. I took up 2 shelves in one of J's cabinets with all my meds, suppliments, and supplies. Plus there is the vest adorning the dining room now, and the nebulizer. I am slowly taking over this place!! Muahahaha! Just kidding!

Wednesday, March 17, 2010


So I had CF clinic on Monday. Everything went fine, same old stuff mostly. I have GOT to start getting some exersise though (I knew that already). But its so hard when you have chronic pain. I played with J's daughter on Saturday and have been paying for it ever since. Everything hurts. I see the pain specialist tomorrow so hopefully we get somewhere.

I got new perscriptions since a lot of mine expired. Hopefully I actually get them this time! I asked for a new perscription for hypertonic saline in January and they never sent it in.

Monday, March 8, 2010

A big sigh of relief.

So Friday was my last day at work. I took a voluntary lay off so that I can FINALLY go on disability. The ball is already rolling on that, the CF legal hotline is going to help me with my application.

It was just getting to be too hard. I would drag myself out of bed, drag myself to work, drag through my shift for work, drag myself back home, flop on the couch, drag myself to bed, and start all over again. I was so tired all the time. I wasn't doing my treatments the way I should, I couldn't clean my apartment, the thought of doing laundry was too much. Now I don't have to worry about all that. I can just do what I need to do.