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.
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.
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.
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
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.
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…
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…
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 ..
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!
When I’m watching a game, like really watching, I’m not that much for talking, I’m all about reacting. My mother knows this, everyone in our house who works for her, knows this, (as I’ve been talking about the games.) Except, they forgot recently… And my bereft gasp in horror as the opposing team scored yet again…
Tis the season of the World Cup. For those who do not know the World Cup, it is the biggest sporting event in the world. It’s the Olympics of soccer. Each nation that earned the slot to partake in the games, brings their finest, and play to win. It’s the Olympics of soccer. Each nation…
I recently did something quite out of character: I read several books about others going through life changing illness. I tend to avoid these books like the plague, partly because if I tend to read books to escape, not compare, and in the past had found little comfort when I had read the stories. Two books were so excellent, that I want to share them with you.
It started with the door bell ringing and my mom answering to find a little girl, about 5 years old, with a tomb-boy demeanor on our front step.
“Hello. Can I help you?” My mom, who is very sweet with kids, asked.
“My name’s Holly. Can your daughter come outside to play?”
The most heart-crushing, soul-center truth about living as a medical mystery is this: you don’t know what you do know, and you don’t know what you don’t know. In other words: we, (the medical community), can not state that we have identified every body system, every element that does not work, or ...
when I was 14, six months before I lost all movement, before my world became limited, I was on a winter holiday with my family, in which skiing was the center objective. I, at the time, was not a fan of skiing. Never mind the fact that I had only ever been skiing once when I was six years old; to put it simply, I felt it was not for me.
Life can be such a surprise. For example, I never would have imagined I would meet one physical therapist who would give me the tools to not just survive but thrive with my medical mystery. But then again, that's exactly what she did.
It would be easy to construe, based on the name of my blog, that my health / physical limitations defined my world. That, if we were meeting me face to face, it would be my primary topic of conversation. If I have been successful in my efforts, than I have to say, that is not the case.
Finally, I have an update as to the feedback I received from the article I was featured in, All She Wants for Christmas is to Find Someone with Matching Symptoms” by Gina Dewink . I received so many emails, which I was very appreciative of, ...
Annoyingly, I came down with pneumonia right after Christmas. I was blessed that by having weak lungs it made me extremely sensitive to it, allowing for it to be caught early. On the flip side,...
Since the first couple of years of being sick, I always wanted to turn my wheelchair into a “sleigh.” I thought it would be fun. This year, with a serious lack of Christmas Cheer, I decided to take my own initiative.
