All in My World
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.
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
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 ..
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.
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.
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,...
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.
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...
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.
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.
I admire those people in life who endure their bittersweet anniversaries by powering through them. They are the ones who don’t dwell on the past, but immerse themselves in the present. I envy that quality. Me? I look back. I remember the colors, the faces, the smells, the sounds. In my mind I visit it like an old friend.
It would be dishonest to portray that I am always on the sunny side of life. When I am stuck in the fog internally, when my gumption drive is all out of gas, and the point in dealing with the physical pain becomes too much, I have a choice to make.
Albert Einstein famously said if he had one hour to solve a problem his life depended on, he would take the first 55 minutes to ponder on the right question to ask. If he knew that, he would know the answer in five minutes. This, is something I completely understand. The value of the right question is immeasurable.
When you have a chronic illness, daily life is filled with a battle of struggles - from the obvious to the “behind the scenes”. While the obvious is one I no longer struggle with but hold hands with, I do have enormous, stuff-in-your-closet ...
