After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Snow Angels at the Cleveland Clinic

Last night we received our first sticking snowfall of the winter. It wasn’t much—just enough to allow you the option of having a slow morning if you wanted the excuse. (Since it’s a Monday, who didn’t?) For an extremely mild winter so far for us, (unlike parts of the rest of the country), this little bit of white heaven was welcome for me. It reminds me of a time a few years ago, when my mother, sister and I happened to be in Cleveland, Ohio, doing a song-and-dance for the Cleveland Clinic, during a blizzard. Now, take a moment and think about what a blizzard means: cold, high winds, feet of heavy snow, freezing cold (it’s so cold it deserves to be listed twice), and let’s just say a general “do not move about”. At the Cleveland Clinic, you show up just the same, especially after the appointments were made six months ago, and you can’t afford to miss it.

On portable oxygen that freezes in freezing temperatures, with a body that generally doesn’t like cold weather very much, with a heavy wheelchair that requires a car lift, a service dog that does not like going to the bathroom in snowdrifts taller than him (which no one can blame him for), plus coats, blankets, a bag of your medical historymy entourage looked more like a traveling caravan than simply a group of three. The two-minute drive from the hotel to the hospital that is literally the size of an airport (and designed like one), took 15 minutes.

This is where we arrive at my memory. Bless their souls, the best thing that the Cleveland Clinic offers, in my experience, is their valet. Their valet workers are the kindest, most on top, efficient people I have ever met. And with what is I could only imagine their minimum pay, they were not even given coffee pots and reasonable time rotations indoors that the rest of the greeter staff there were given. How do I know for sure? Because I asked. Those guys were my angels those three days, and I attempted to pay their kindness forward by bringing it to the attention of every doctor, nurse, and technician I came across. You would be amazed how many of them had not even thought about it. In total, after my 19 tests and seven specialist consultations, only two of them had given it any notice.

Boy, did I begin to give a lecture on preventative medicine, asking even more questions concerning my observation of how they take care of their employees then almost of my own condition (Almost really is a key word here; don’t worry – I wasn’t so disregarding of searching for answers or understanding the value of my questions with such knowledgeable doctors). The valet guys really are the first impression you get upon arriving, and there is an absolute minimum wait from the most helpful people I encountered there.  This is in such contrast with so many other institutions I have come across, who have probably a tenth of the traffic and literally can take over 40 minutes to move 20 cars. Why not park yourself? Well, in so many instances, they did not allot even more than 5 handicapped parking spaces… Annoying.

The point: always appreciate the people who are out in the cold, rainy, burning hot, and snowy days, driving to make your life a touch easier. They’re such a gift.

Treadmill: Not Me, My Dog

My Sleep Nanny