It’s just an aspect of my medical case that befuddles me to this day–

How can so many smart doctors be so dumb?

I’m kidding, of course–I know they’re not dumb–but the number of times doctors have been wrong demonstrates the degree of how unusual my medical case really is–

For example,

the day I was diagnosed with bacteremia in November 2005.

I told the doctor I was dying–I felt like I was being “sucked to the ground”,

and he smiled nicely and told me to go home, to take a nap and drink some fluids.

Thankfully, a few hours later my blood cultures which had been drawn a few days earlier came back positive, saving my life.

(And validated my being ‘sucked to the ground’ feeling–) 🙂

But I looked healthy that day–really healthy. I had no fever, no chills, and no elevated wcb.

In the same blood draw that I cultured positive for entercoccus and corney bacterium,

all of my standard blood work was normal. My wcb was 6.7. Normally, it’s 2.9-4.2. I was 6.7 this day, still waaay below being considered elevated.

So if a doctor was going to determine whether or not to draw blood cultures on the way I looked, or based on my cbc and chem panel,

they would not have drawn any blood cultures in the first place.

And I probably would have died.

I have many other similar examples like this…doctors telling me I’m fine (or worse, that I have anxiety/depression/delusional disorder (that was my personal favorite)),

and then only later, usually by a culture or a surgeon,

then they indeed find that something seriously was wrong all along.

If doctors just based their decision to prescribe me antibiotics or surgeries based on my blood work or imaging studies,

I would have died years ago.

I have to have doctors who are willing to listen, and base all medical decisions on a clinical evaluation–including, but not limited to, how I’m responding to medications (basically, if they’re making me feel better or worse).

This day of my bacteremia diagnosis is just my most extreme example of my immune deficiency in action, though I have other similar stories.

I use this example now, because it was the diagnosis that was the *most* deadly infection I’d ever been diagnosed with,

the doctor was the nicest and most conscientious I’ve ever known (if he had even thought for a split second I was about to drop dead, he would have immediately called an ambulance),

and yet I was still told I was fine–

If I can’t look sick with bacteremia, when the f*** am I ever going to look sick?

Well, of course I’m never going to look sick.

As one nurse said to me,

“I never look at how you look Teddy. I just close my eyes, and let you tell me how you’re feeling.”

Believe it or not, you want to look sick when you’re sick. It’s like being trapped in a bubble where no one can hear you SCREAMING when you’re suffering on the inside and no one can see it on the outside.

And this nightmarish never ending minimal response is never going to end until my immune system gets fixed…

Which hopefully, will be one day soon.

🙂