Today I am 42

Yep. The cat’s outta the bag. Either you thought I was younger than that  – or you thought I was older. Let’s just say you thought I was younger.

As I was saying… I am 42. It’s been a strange and long road to get to today. Not only the usual being born growing up stuff that people do. Not even the mental growing up that we often are forced into. Not just because I am terminally ill.

On August 8th, 2011 things started to change. I survived a massive  pulmonary embolism.

I’m not being dramatic when I say MASSIVE. It actually was SEVERAL clots. I thought I just had a panic attack. I count my lucky stars that I work with AMAZING people. My two ANGELS know who they are.

I had no idea what was wrong with me except I had blot clots. They gave me oxygen and blood thinner. Scanners for this, that and the other. It took hours. I didn’t actually know what it all meant until I managed to get out of the resident doc.

I am crafty. As soon as I questioned the resident, I grabbed my iPod Touch and jumped on the free hospital wi-fi to google blood clots.

And that’s where I learned why everyone was so grim and serious, including my husband.

As you know, looking up any kind of health problem is scary. I had NO IDEA I was moments from death when I arrived at the hospital.

It’s almost a year since that happened. I was bedridden, had physical therapists, visiting nurses,visiting care assistants, and not a lot of strength. It took until Thanksgiving to realize that although I was regaining strength, I had lost a fair amount of it too.

I had to accept that I wasn’t going to remarkably improve, the ALS was still going to make both breathing and walking more difficult.

It’s just how it is going to be. It’s how it is.

I spent a lot of time showing everyone my strength to help my loved ones and other people who suffer the same fate how great I am doing at carrying it all and being so positive. This is the other side of that coin.

It is hard. Life is hard. Life is hard for everyone. That is truly how I get through my dark times.

It’s hard to think ahead to the next year when I’m not even sure I’ll be here next year. It’s hard to set personal goals or even professional ones when I no longer see so far into the future. Those are part of the life I left behind.

I am finally in the here and now. What motivates me now is what I can do NOW. Right now. Not last year, not next year. NOW.

Happy Birthday to me as I am now!

 

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A book started it all

I was at a turning point in my life — unbeknownst to me. My mom & my Aunt Diane were reading these books about simplifying their lives. I was skeptical. I started reading SIMPLIFY YOUR LIFE: 100 WAYS TO SLOW DOWN AND ENJOY THE THINGS THAT REALLY MATTER and I really couldn’t put it down. Now that was nearly 12 years ago and things have significantly changed since then! I dumped my long time boyfriend, moved out, finished school. I’m now married to a great like-minded guy who doesn’t mind that I’m a nut. And we got kids and cats and a house. Even my career has changed. Change can really be made with some simple steps.

Hello world!

Live simply, simply live. It came to me one day while sitting in a hot tent on even hotter blacktop one July. My mom & I were selling my photographs at the Brockport Arts Festival and, well business was slow. Lots of people were walking by having already spent their cold hard cash on a stick with some fabric glued to it. I remember the old Italian guy a few booths over yelling “Cappuccino! Espresso!”