David visiting me in the hospital last year

This is a picture of David visiting me in the hospital, when I spent my last birthday there with unexplained tachacardia.

They never did figure that one out…eventually, it just went away on its own.

Isn’t it amazing how healthy we look? You’d never guess we have so many health problems from this photograph!

Nurses are usually shocked when they meet me, then try to open my medical file but they can’t because it’s so big–the thousands of pages of medical records don’t match up with the patient in front of them–it usually catches any new nurse off guard for a few moments–

Unless they already know me, of course. That’s why I like sticking with the same hospital, in spite of its limitations. It’s nice to go somewhere and have people know ‘there’s Teddy, the strange medical case’,

versus going to a new hospital, ‘what do you mean you’re really sick but look healthy?’

Starting from the beginning gets harder and harder as I get older and sicker. I have less time (and energy…and patience) to spend on proving my misery to others.

I just need them to understand.

You can’t help someone until you see there’s a problem.

And getting people who don’t know me, to see that in 5 minutes or less so that they can evaluate whatever current symptoms I have,

is close to impossible–

We just look so dang normal.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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