A year of change, again

Happy one-year anniversary to me and my hubby.

It's been a year like no other. It's been a year that is the reason for me starting this blog, c/o both the thrilling and scary things this year has brought.

First, and foremost, is the thrilling. I knew this long ago, but Mike is definetly the man for me. Our first year of marriage has been as beautiful as any other point in our relationship, and I couldn't be happier. I look forward to every day building dreams with him and working as a team to chase them.

Secondly, it was the 'calm before the storm' emotionally for me in many ways. This time last year marked the decided end of my working career (yes, I know that down-the-line, post-transplant, this will re-emerge as an option). Until this point, I saw my short-term leave that began in February '08 as temporary. As well, this was the turn around for me and my illusions of Cystic Fibrosis. I had already been through a mental change following my monthlong winter hospital stay (my longest ever, and only 4th admission EVER), but September '08 began a string of CF deaths that hit close to home and shook my confidence in the future. I lost my first CF friend in November '08, who also happened to be my first close person to die in my life. Also EVER. I still have all my grandparents and all my friends and family that were there since I was born. Since then I've felt vulnerable, and sad, all the while soaking up my beautiful married life that contrasted so deeply with this.

I cherish my husband for his infinite patience and love. Happy anniversary hunny. To a new year of growth, together.

*the couch photo is my CF friends who shared our day with us*

By Request

My one and only reader wants a post about 'risk'. Who am I to argue?

I have to agree that CF involves countless risks. The problem is, having known only this body, I tend to assume it is just "life" that is riddled with risk. I don't think I'm too far off the map, and I credit my parents for raising me with the 'im not different' attitude.

That said, 'risk' for me since losing significant lung function in the past couple years, has become a panic that strikes amidst previously low-key events. Getting sick, for example. I now feel that the consequence of getting sick once can range anywhere from what a 'healthy' person would experience, to the beginning of my transplant journey.. or worse.

My other type of risk-awareness comes from a few bad experiences this past year of feeling helpless. Limiting myself to one example: while walking our dog I found myself feeling faint and short of breath. In the moment I worried about fainting in the heat and dropping my dogs leash on the busy street and him running onto it. Afterwards, I felt angry that I was unable to go out confidently on my own and express my independence. I should also note, that my parents decided after this event to buy me a medic-alert necklace for when I am alone. I'm glad the medics will now know how to treat me, but I still don't want to be in that situation!


These perceived risks that are ever-growing shrink my world. I tend to say 'no' to things more often than 'yes' because the burden of doing it all seems so large. It's hard to put into words how even if I feel well (relatively) I experience feelings of weakness, or vulnerability in my body. I've considered the possibility that these feelings are, in fact, psychological, but theres even a risk involved in believing that!

Illusion is a wonderful eliminator of perceived risk. It allows you to mentally live your life to the fullest while perhaps physically shortening said life. Since CF often progresses slowly, then suddenly very fast, its not hard to imagine that you're really not all that sick at first. Add to that the critical time-frame of youth being the stage when things can be going downhill and you've got a big risk of inadequate treatment (because kids tend to feel invincible).

CF is really difficult when it comes to weighing risks. I can imagine myself having my current level of awareness and better lung function. I can imagine thinking that I must give up everything necessary to preserve my lung function in order to be ready for the wonderful drugs that clearly seem on the horizon. I can imagine foregoing nights out with friends, or that extra shift at work in order to do so. Yet I sit here with borderline transplant SAT's, and every missed treatment or late night could mean a quicker trip to the operating table, if I get there. And that's exactly it. The drugs may not come, or work. It might be years before large enough steps are made in controlling CF. I certainly don't expect to enjoy the benefits of them. Permanent lung damage is what it is. Even the severely damaged lungs, that doctors advise me/us to "hold on to as long as you can" might give way to new lungs that just don't work with my body. I might live 2 months or 15 years past transplant.

So, each of us has to manage and balance our risks, to our own discretion. This is our life, and there may never be another chance to have that night out. We have to live as long as we can, while enjoying everything we can.

Another thing I'm working on

Along with my desire to start a blog comes another project I've had in mind. I borrowed it from another bloggers page, and I'm hoping all the pieces fall into place.

I've decided to start saving money for having a baby through a gestational surrogate. This by no means is a plan for too near in the future but since everything in my life seems to require planning, I am going to be proactive about this. That said, our first little step is collecting all of our loose change for our baby goal. My husband hates spending change so I anticipate a nice, full, container within a few months.

Secondly, I have a friend of a friend of a family member who makes these beautiful kleenex-box covers shaped like sofas. She is elderly and apparently gives 100% of the profit to cancer. It just so happened that my grandmother was given one as a gift, was inspired to buy 2 for her daughters, and further inspired (by our interest) to buy 4 more for her granddaughters. I bought 5 more to try and raise money for the Great Strides Walk this past spring, and before I knew it, I had people requesting loads of them. My problem is, I need to learn how to make them myself. Also, if anyone knows where I can find a place to sell them online (in Canada) it would be greatly appreciated.

As I said, all for the future, but I am excited at the idea of something to work towards again (since being forced to quit my job due to my health).

Finding my place here...

Hi. My name is Michelle, and I'm going to give this blogging thing a try.

I'm pretty excited about it, and I've been stalling this first post in hopes of coming across some great, unique idea that will accomplish both giving me a new hobby, and being an enjoyable read for as many people as possible. Something along the lines of http://postsecret.blogspot.com/. As it turns out, I'm going to 'wing it', and take a risk, and enter this world like so many bloggers, with only my story to offer.

I follow several blogs, and the simple, honest accounts of regular people's lives can be the most compelling. We'll see where this can go.

I once read that there are two things that help people sleep easy at night, prayer and journalling. I guess the idea is getting things off your chest and mind. I realize that treating this blog like a diary comes with the risk of it being the epitome of boring, and I actually welcome the idea that I must follow rules here.

So, to conclude, Hi. I'm Michelle, and I'm going to give this blogging thing a try. I'm 27 years old with Cystic Fibrosis. I am married to my perfect man, dreaming of building a family and growing old together against odds.