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?
All in My World
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.
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
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 ..
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.
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.
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,...
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...
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.
Blessed
As I shared in the last blog, I was getting ready to go to my sister’s wedding. I went and the most important thing happened: my sister was a radiant, giddily happy bride. Second to that, my family, as usual, went above and beyond so that I could enjoy and endure as long as possible.