“Professional patient” is either a term that you rally behind or shun, both by the ones ill and by their communities. It is meant to be a sign of respect, and yet it can also repulse, implying a choice…
Lost Records
I didn’t scream. I wanted to scream, but it’s not my nature. I simply froze, having just learned that all my blood tests, lab reports from my doctor’s officehad been lost…
Life in the Illuminated Aftermath
After sharing my news of recently solving my almost 18 year medical mystery, and receiving an outpouring of support and encouragement, I came to fully comprehend what it feels like to have light illuminate an 18-year darkened room. It’s overwhelming in every sense, …
Mystery: Solved
I had done it. For the first time in 18 years, the equation of explanations to all of the questions about my physical health, was actually balanced, answered—everything neatly explained in complete harmony. It left me in a state of complete shock.
The Search-Lorenzo’s Oil
Life can have a funny sense of timing. Watching Lorenzo’s Oil (1992), a drama about a parent’s fight for their son’s life who became sick with a rare and incurable disease that greatly affected his neuromuscular ability, months before I became a quadriplegic, in a surreal foreshadowing of what was to come, qualifies as one of those instances.
Service Dogs – Off Duty
Service dogs are not only trained to know your needs, they are trained to help you with them and over time the relationship can develop to the point where they anticipate them before you can verbalize…
The Summer Conundrum
The beautiful summer weather taunts and cajoles us to come outside and play. Yet, it is in these flirtations that make me all the more of the limitations that I can not partake in. Should it keep me from trying at all?
Mother’s Day
I can not think of a single time in the past seventeen years that I have met someone that did not meet (or previously know), my mother. There probably has been one time, maybe two, but you get the picture...
Consequences
Just as with physics, every action, every moment I do causes an equal and inverse reaction. It is only with 17 years of experience and judgement that gives me an idea as to what that negative reaction will be. It is also one of the biggest clues I have.
Professional Egos...
Doctors and/or medical professionals can be excellent, but when dealing with their egos, well, it can bring out my own ego as well. My ego over my body is born out of respect and fear, as my body plays by no rules, and doctors egos can lead them to my life threatening mistakes.
Heart Health Awareness Month
I always find it ironic that (anatomical) heart health awareness month is intentionally associated with the month that we celebrate love, or our emotional heart. Sure, I get the connection, but doesn’t our mental health play a greater connection…
The Undiagnosed Disease Network
The Undiagnosed Disease Network is a medical program affiliated with 12 hospitals; an impressive and potentially hopeful program for patients who have ailments that can not be diagnosed or identified. If you are accepted, the team of different specialists go to exhaustive lengths over the course of one week to identiify, diagnosis and potentially treat what ails you. Sounds perfect for a medical mystery like me.
Holiday Blinders
It’s the holidays, a natural benchmark for comparisons for where we’ve been and where we’re going. I’ll be honest, I don’t like bench marks.
Service Dogs—Angels? Possibly. Saints? Not Necessarily.
Camelot is my second service dog, and in a way it makes you a veteran of hearing stories about super smart dogs that will demonstrate their intelligence you never knew you wanted to know. At least, that’s what I thought until I read some of the stories about Arwen, and was inspired to share a few of my own.
Looking for a Blessing
Sometimes you just get a string of bad luck. Like so many people, I do not do well being sick. I not only try to avoid sickness like the plague, I deny it even more. I push my body to the brink, and then I only admit
Medical Politics? The Rules Of The Game
Being a patient with chronic illness means you have entered the medical political realm. Medicine is politics, and there are rules to the game. Here are the five top rules I have learned to live by in this arena.
The Pain Companion
Pain management has become quite the divisive I've argument in the US today. As everyone experiences pain differently, and deals with it differently, it is not a topic I choose to explore. However, a recent read of The Pain Companion by Sarah Anne Shockley may be helpful…
Unexpected Drama
This past week, my status as being the only medical mystery in my family was challenged—not something any of us ever desired—especially since it was challenged my beloved service dog, Camelot. Spoiler alert: there was no life threatening crisis, thankfully, just a complete puzzle as he…
Dreams, Fantasies and Something In Between
When I was younger, (and healthy), I decided, no matter the career or path I took, I really wanted to be what Disney called, an Imagineer. Creating a dream. It would be cool to work for Disney, but I didn’t want to limit myself to that. I just wanted to live my life creating something imagined. Personally or ..
Gardening, Anyone?
Which is more important: an activity that I enjoy that also happens to be good physical therapy, or achieving physical therapy activities outside the standard exercises and happens to be an activity I enjoy? When both is met, it is the ideal activity. This is how I got into gardening. To my surprise, I learned I had many 4 legged helpers who approved!