Yesterday, I had my first neurologist’s appointment of 2018. After eight years of living with the diagnosis of the neurological movement disorder dystonia, it amazes me just how far I have come. From countless falls every time I tried to walk each day and needing to use wheelchairs and scooters in public, I now find myself able to get through a thorough neurological exam under fluorescent lights … [Read more...]
It would be an unequivocal understatement to say that the month of January has been a momentous one for me in my health journey. It was during the second week of January some 17 years ago, when I got into the bike-car accident that resulted in muscle tears, bone bruises and a vicious cycle of chronic pain, insomnia and stress that eventually triggered the full-blown manifestation of autoimmune, … [Read more...]
First, the good news: I was able to successfully get out of bed this morning! You may be wondering why I would bother to make a big deal out of this. Don’t the vast majority of humans roll out of bed every morning without a second thought? Well, on top of the pain and stiffness that often comes with dystonia, lupus and fibromyalgia upon waking, I should probably also tell you that after a marathon … [Read more...]
Even when it can seem like the vast majority of my dystonia symptoms are in a strong remission, there is no guarantee that that they will stay that way. Just because I am able to do a two-hour intermediate yoga practice one day does not mean I will be at all steady on my feet the next day—or even later that night. While this reality can be disappointing for friends and family who are counting on … [Read more...]
Like a lion hiding in the underbrush before it pounces on its spied prey, the symptoms and severity of lupus and other auotimmune diseases can sneak up you when you are least prepared for it. One day you may be feeling like your old self before the disease took root, super strong, active and as healthy as the next person. The next day you may literally collapse, a rash spreading across your skin, … [Read more...]
Cynthia Toussaint was a promising, 21-year-old ballerina when she was struck by a seemingly simple hamstring injury that ultimately led to a lifetime of widespread pain. After being a performer for so many years, Toussaint was accustomed to the bright lights and action of the stage. Now she would have to learn to manage the burning heat and immobility of chronic pain. “I had just had gotten a … [Read more...]
For many folks living with the debilitating neurological condition dystonia, getting physically active and staying fit can seem like a near impossible dream. Repetitive, involuntary muscle contractions can cause the body to twist or take on abnormal postures, leaving muscles tight, strained and sore. Understandably, some fear exercise might make this condition worse—yet on the yoga mat, I not only … [Read more...]
"Threading The Needle" by Renée Canada I thread the needle Through tight angles And strained filaments. I look out and through the space That grows and slows with breath And settles from stillness to peace. The battle to control the resistance Overcome by love and acceptance Of my limitations and imperfections. … [Read more...]
It appears that autumn is finally starting to creep into Connecticut. It’s back to pajama pants, socks and the comforter on the cooler nights, and I bundle in my lightweight hoodie and bedroom slippers to comfortably get through the chilly mornings. Days give way to sunny, yet mild temperatures. And as someone with heat and sun sensitivity, I embrace these days because it means that I can enjoy … [Read more...]
I still remember the day I sat in my then-rheumatologist’s office more than a decade ago, fatigued and broken, seeking yet another treatment, desperate for solutions. Seemingly helpless in the fight against insomnia, suffering from daily migraines, brain fog and digestion problems and saddled with excruciating pain, numbness and pins-and-needles sensation of misbehaving nerves, I was so physically … [Read more...]