Yesterday, people from all over the United States (and even in countries across the world) got together to march for equality. Marchers were there for many different reasons, equal rights, inclusion, protecting and increasing civil liberties and more. I am no stranger to marches, having walked different progressive causes during the last few decades. But circumstances have changed and I am no longer able to physically pound my feet on the concrete and chant along with the masses to fight for our collective rights. But the activist in me will not be silenced. So I will fight.  For equality. For inclusion. For saving health care soRead More →

An emotional support dog is an animal that provides a therapeutic benefit to its owner through companionship. Today I remembered that I have a puppy.  As a chronically ill person, my dog is an integral part of my life. I rely on her company and presence. The softness of her fur and the reassuring heft of her warm body leaning against me as I spend most of my day in bed. In the fleeting moments when I sit outside, she cuddles up and watches the signs nature occurring all around us with a youthful curiosity and a sense of wonder. She is love and supportRead More →

I’ve been sick for a while now, but I still find it amazing how quickly a pain spike (or flare) can completely knock my life out of whack.  It’s a life pared down from my past, filled with doctors and medications instead of policy, advocacy and action. I have grown accustomed to the rhythms of this chronically ill life, learned how pare back to the absolutely necessary while dealing with the daily, constant presence of pain and the symptoms of sickness. And perhaps because of pain’s sizable role in my daily life, I feel surprised when my body finds away to increase the pain andRead More →

So, after many good years with my previous blog/website provider, I have decided to plunge headfirst into the world of WordPress. The fancy new blogging area will have the same type of content and I will slowly be reposting the blogs from the beginning of 2017 until the changeover. All blogs from 2016 on backward will be housed in a separate area which is currently under construction. Thanks for your continued support! JennRead More →

I’m aware that I’m rare After a while you get used to it. The barely suppressed delight on the face of the newly minted intern or medical student who has only read about your condition and now sees an actual specimen in the wild. I’ve become accustomed to groups of doctors listening in on exams while steadfastly taking notes as my history is rattled off once again. My way of dealing with it is through encouragement. Hey, here I am with all of my textbook symptoms, look and learn about the seemingly unconnected set of symptoms that all add up to make-up my rare disease. AfterRead More →