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.


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.

If you think, following the order of events, that it would be the appointment with the doctor, you would be wrong. There I have developed great skill. Like a well-trained athlete, I am ready and prepared for that one-on-one time. I know my facts, I listen to their argument, I have my game face on, and I go in open-minded, yet cautious. I study their body language, ask one or two simple questions to assess how well they know my history, and then analyze the likelihood of my seeing them again. If you knew me well, you would know I have my poker face on, and you would only know that I am thinking, as there is no expression on my face.

With the doctors, I know how to play the game, though granted there are a few times I don’t choose to play it well. But that’s another story for another time.

The part that I have developed zero coping skills for, I mean without a doubt terrible, zilch, ability to process is—drum roll please—the doctor summary report.

That? You ask, dear reader. Oh, yes. One of the only things still mailed (though often now in patient portals), can send me into a hysterical, irrational-tizzy that we all avoid like the plague.

The envelope arrives. It appears perfectly harmless on the outside. Sure, just like any other deadly predator. But it can mean everything, or anything. Even though I have yet to develop after 15 years a coping mechanism for opening the letter, reading it, digesting the report in a calm, cool, rational demeanor, keeping perspective that it is only one doctor’s opinion, we have come up with a simple plan of attack. The first step: my mother opens it and reads it.

Brilliant! She can study the bomb. She is calm, cool, collected. After she has read it, assessed it for misinformation (you would be amazed how often that can happen), poor conclusions, and any other potentially upsetting feature, she gives it to me.

Now, naturally, I do not take it. I ask for the cliff notes. In recent years, my mother has come to insist I read them myself. Well, one of the last times we got one, I simply glanced ONLY at one particular lab result that interested me, and then laid it aside on my dresser. Six weeks would pass before my mother gave up and put it away. No, I never read it, to my best friend’s horror. My mother even got on me, though: she told the doctor I hadn't read it either!

Yes, I am a coward in this regard. I can take a needle being stabbed into my arm at the exact same time as a needle in my spine, with the only sign I felt it by the inhaling of air, but I can’t read about myself in medical terms.

Why? Because my body doesn’t add up on paper. Because one doctor’s interpretation or diagnosis only lasts until the next doctor questions it. There is no baseline, no starting position or home base I can run to and call time out. Something factual I can point to the doctors and say, “you can say whatever you like, but this is my perimeter, my foundation.” That is fundamentally what I lack. Even my cancer diagnosis was stupidly questioned by the Cleveland Clinic. (It was quickly laid to rest, I might add).

Thus, for our own equilibrium, my mom and I stick to our procedure. Except this last time, it didn’t work out that way.

It was emailed (trixie email), and what I thought was a cover page included the full 14-page summary. Did I read it? To be honest, I skipped to the end for the Summary Conclusion and follow-up tests.

And then spent the next 16 hours wishing I hadn't.

Tea Cup Ride

Tea Cup Ride