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!
A Shriek or A Scream?
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…
World Cup Blood Pressure
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…
Book Corner
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.
Play Date
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 Crux of The Matter
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 ...
Irony: My Ski Lounger Experience
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.
The Woman Who Changed My Life
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.
Me, Not My Illness
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.
My "Christmas Wish" Results
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, ...
One Way to Start the Year -- Out of Order
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,...
In Need: A Dose of Christmas Cheer
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.
Hope
If hope were a man, we’d have a very passionate relationship. You know the kind, volatile. Throwing things at each other and yelling at the top of our lungs, or spooning and being all sappy-happy. There would be no in-between.
Snow Day
Like so much of the U.S., we recently have been experiencing a cold blast, almost heralding in the arrival of the holidays. With the crackling wind, it reminded me of a fun memory from a few years back when we had received a heavy dusting of snow. Watson, my friend, at-one-time-caregiver, and all around medical-co-conspirator, was spending the day with me...
Tea Cup Ride
There are a lot of things I may miss that I am not able to partake in, but the Magic Tea Cup ride is not among them. If you are thinking, yes, naturally, that’s something you can say you experienced and not miss out on, well, I must correct you. The reason I do not
Tailspin
In a previous blog, I shared a dreaded task that I have down to an absolute science, countless times: the new patient forms. And this post, I will share what comes after that, more of the end result, the part that I have no coping skills with.