On Decades, Miracles and Living the Dream



Image credit: dvarg


Today is the 10th anniversary of my first injection of a biologic. At 3:35 PM, to be exact.

Today is the 10th anniversary of me getting a second chance, of being given the gift of getting back my life.

Ten years ago, I thought I’d celebrated my last Christmas. I had nothing left — a severe RA flare had eaten everything: my strength, my ability, my social life, my energy, my hope. I felt burned to the ground, a pile of rubble and ashes.

On January 7, 2005, the funding came through and I got my first shot of a biologic. I went home, took a nap, and woke up a different person. I still remember that feeling, although it is hard to describe. I remember waking up, knowing that the medication was working. Feeling somehow different, as if a few drops of energy had begun to trickle back in. As if the swelling and pain were infinitesimally reduced.

It continued and gradually, I rose out of the ashes. What was not gradual, however, was my embrace of this new life. That was instantaneous and filled with joy. A joy that has never gone away, sparkling around the edges of every day of the past 10 years.

In 2011, I interviewed Christine Schwab. She had just celebrated her own 10th anniversary and I remember marvelling at this. Of hardly daring to imagine that the meds could work for that long. Although I had made my own five-year plan a year before this conversation, imagining an entire decade of medication working was the stuff of dreams.

Looking back on the last 10 years, I am awed by what this gift has brought me. I’ve become a Moster (aunt) to my smart, beautiful, and energetic niece and nephew, the Tinks. I have been given the privilege of helping my mother after her accident, as she helped me for so many years (and the joy of watching reality shows with her). I met the love of my life, a man who in every way is perfect for me. I wrote a book (well, two), fulfilling a lifelong dream, and found a job that I love. And then several more jobs, advocating about disability and health, roles that I love just as much and where I get to make a difference. I said goodbye to one cat and hello to another. I’ve enjoyed several digital cameras with which I photograph this beautiful world of ours.

I got to be here, every day. I’ve been here in all the little moments that make a life even more so than the big events. I’ve gone grocery shopping, done my banking, had debates about ideas, read good books, discovered texting and manicures, rediscovered coconut macaroons, made new friends, said goodbye to loved ones, became obsessed with Sugar Beach, and found my tribe online.

I don’t remember ever being bored in those 10 years.

There are times where it all feels like a dream and in many ways, it is. A dream made real. Everything I ever wanted my life to be, what it wasn’t for most of my life, and what it is now. Living full-throttle, despite never once engaging in an extreme sport. Waking up every morning, at some level grateful to be here, aware of how much of a gift it is.

And every time I get my shot of a biologic, I still send out a silent thank you. To the researchers who created these drugs. To the pharmaceutical companies who make them. To the taxpayers of Ontario who make it possible for me to get it and therefore create this gorgeous life of mine.

This is what real fairytales look like.

Thank you for being with me on the ride. I can’t wait to see where we go next!
     

Comments

Eileen said…
Happy re-birthday!

It goes to show that miracles can happen.

Happy New Year too!
AlisonH said…
I've probably already told you, but. In '03 I was at the very edge of death from Crohn's and they took the great risk (there being no other choice, but they made it my choice) to give me Remicade, even though I met the black-box warnings for not giving it.

I know exactly what you're talking about. That knowledge that everything was turning completely around now, almost immediately, because of that biologic. There was an intern who had intended to specialize in endocrinology, who changed his specialty to GI because he wanted to see miracles like that again, he told me with great passion and gratitude. My GI told me the guy was going to make a fantastic doctor. He is now indeed a GI in southern California.

It's miraculous for us as patients and it's a source of hope to our medical providers, too. Healing others is what they got into this for.
Kirsten said…
Hey! I think I've been reading here since you started the blog, and every minute has been pretty happy. Here's to more decades, Fairy Princess!
Lyn said…
Lene, I am so happy for you. Your bubbling sense of joy keeps so many of us aware of what life is all about--I know it certainly helps me, and gets passed on to my friends and readers, too. I have been on biologics for about 13 years, and like you, knew very quickly how much better I'd be on it. I knew I'd be in a wheel chair soon if it didn't work. Now I've had 10 relatively good years insofar as the RA symptoms, but at 82 I am permanently on a walker, due to a twisted knee that gives out with no warning, and heart complications, maybe caused by the 58 years of
RA. Who knows!Thanks for your gifts, dear one.
LynnM said…
Loved your ten year reflection post.

Wishes that you continue to never be bored!
livingwithra said…
Happy 10 year biologic anniversary!
Andrew