Welcome to my new Website! I thought it appropriate for my first blog post to tell you about the journey that brought me to this moment.
When You Believe You Are Dying
I drive to work, 45 minutes in my standard hatchback and park on the street. I turn off the engine, pick up my lunch and purse, take a deep breath and open the door. Take another deep breath. Getting out of the car was becoming my most dreaded part of the day. The fear of my legs and hips suddenly deciding to retire, forcing me to hug the pavement, was surreal.
“I must not exercise enough”, I reminded myself often. Those evenings, I would search the Internet for local classes I could take. Maybe my hips are just tight. Belly dancing seemed like a good option, until I’d cry all the way home from pain after class. Arriving home, I would dry my tears and show excitement at demonstrating what I had learned to my hubby and kids. I studied belly dancing once a week for seven months, and cried for seven months.
Doctors kept ignoring the problems, since my routine blood work was tip top! “Have you tried yoga or swimming?”
I did yoga once a week for a year. I figured it would also help with stress in case that was the problem. I quickly learned that I had to make sure I wasn’t running out of tissues in the car before leaving for class. I would sit there for ten minutes crying from the pain, hoping the next class would be better. “It takes time, be patient” was playing like a broken record in my mind.
Eight years. Eight years living with pain. The pain evolved and so did the problems: hypothyroidism, repeated sinusitis, severe menstrual issues, chronic fibrocystic breasts disease. However, I didn’t have apparent digestive problems. One December, I told myself there was nothing wrong with me and shoveled the fifteen centimeters of snow that had fallen in our driveway. “There’s nothing wrong with you, just breath through it!” I shoveled the entire driveway. “See! You can do this!” I stepped back into the house, took my mitts, boots and coat off. My muscles seized, I got dizzy and crashed. I spent the entire day and evening on the couch, in pain, weak, dizzy, believing I was dying.
I didn’t have a family doctor. I had been visiting an independent same-day clinic for a few years, trying to always go see the same doctor, who in my last visit with him told me: “Have you thought that it might all be in your head?”. I was ready to give up when one day, I noticed this same-day clinic had a new doctor who had just started. WOW! Finally a doctor that made sense – to me this meant she truly listened to what I had to say! She asked questions and showed she cared. She sent me to a neurologist and referred me to a family doctor. She gave me hope.
Over one full year being investigated for a mitochondrial myopathy, a form of muscular dystrophy, made me believe there was nothing to be done but live my life as best I could. We moved to a quiet house in a serene forest. A bungalow that could easily be converted for wheelchair accessibility. I had moments of despair. But I had amazing support, so I kept smiling. One day, I asked my then fifteen year old son what makes him proud of me, to which he responded: “You don’t give up.” There was no way I was going to live my last years sulking and complaining. I was going to be an example for my family and the world. Having given up on many of the activities I loved, I starting focusing on what I could still do or new things I could discover. This change of mindset was instrumental in keeping my morale positive.
I’m Not Dying After All
On March 5, 2017, thanks to an amazing friend, I met an extraordinary woman who lived a very similar life to mine. I found out about Celiac disease and that it could be the cause of many of my issues. Stopping gluten right away meant I could potentially start getting better very soon. I chose to stop immediately, even if that meant not having an “official” diagnostic, as Celiac diagnosis blood tests and intestinal biopsy require that one continue consuming gluten for results to be more accurate. I had lived with pain long enough; what I wanted most was to get better. Sure enough, within four days, I walked up and down stairs with practically no pain. I could not remember the last time I had that level of energy. I was flabbergasted. The concrete walls around my life crumbled and I was open to a whole new world of opportunities.
Through this Website, I will guide you through my process of transitioning to a 100% gluten-free diet, my trials and tribulations, my ups and downs, my healing, my hopes and my dreams. I continue to be an example for my family and the world, by being strong, courageous and helping others who might be living what i have lived.
Thank you for joining me in my journey.