Still fuming about UCLA, but grateful for the doctors I do have.

I just wrote this email to Dr. D, who emailed me back sending me some compassion for what happened today.

Doctors who know my case, know how much I’ve suffered over the last 7 years.

I don’t know where I’d be without doctors like Dr. D.

Begin forwarded message:

From: Teddy
Date: February 6, 2012 6:46:52 PM PST
To: Dr. D
Subject: Re: “You’re too healthy to have something seriously wrong with you.”

You’re right, and that’s what my boyfriend said too when I was upset ‘this isn’t the first time a doctor has treated you like this’. It still rips though.

When I mentioned David and I were going to see Dr. Jennifer Puck on Tuesday (tomorrow) in San Francisco, he then started to contemplate something maybe might be wrong, but not really. He just had to leave a little window open, but clearly isn’t interested in doing that much to help. He just wants to be in the picture to stand up proudly and say, “I told you it wasn’t anything that serious!”

A place like UCLA would have killed me a long time ago. They just couldn’t get through their heads the concept that I’ve had numerous diseases with false negative test results, diseases that were either proven later with a surgery or by a culture.

The more I talked, the more they thought I was a paranoid schizophrenic mother with muncheons disease. Just like the good old days. Cedars class of 2005.

At the end of the meeting, they started to become attackatory, ‘why are you doing this? Why did you do that?’, and I totally shut down, becoming evasive ‘I don’t remember’, because the meeting was over.

Dr. St insulted me beyond his wildest imagination telling me directly into my eyes “you’re too healthy to have anything seriously wrong with you”, even after I told him I have over 2,000 pages of medical records,

and now he was adding insult to injury by trying to discredit any of the medical decisions made on my behalf to help keep me alive.

They were just looking for evidence for how I’m trying to kill myself with medications. They weren’t interested in listening.

Doctors like this can be dangerous (not to mention deadly on cases like mine), so I’m going to remind Dr. K the same thing. You already know this, but if anyone would *ever* call you and start harrassing you about my case, just tell them nicely, “you’re welcome to review the over 2,000 pages of medical records for Teddy Leigh, dating back to when she was born, and then come back to me with your questions. I simply don’t have time to go over all of the facts on her case in one phone call. But I’d be more than happy to discuss Teddy’s case with you after you’ve reviewed all of her records.”

Here they have only a *minute* fraction of information, and yet they want to discredit decisions made over hours and hours of information and evidence. That’s not even scientific to ignore the records, and yet these are the doctors who usually pride themselves in practicing ‘evidence based medicine’.

Then practice it, and read the 2,000 pages then decide whether or not I’m healthy.

And even more frustrating, they demand/expect a 30 second explanation of proof for what is really at least 6 hour discussion.

At this point, the doctors I’ve been seeing for years, have gathered little pieces of information that an initial meeting can not even begin to tap.

I see these first doctor meetings as an offering to come abroad on a strange and bizarre journey, where the rules are more like a house of horrors than anything you’re going to find in ‘standards of care’.

People either embrace that challenge, or (more often) gawk. “What?? What do you mean everything I’ve learned over the last forty years doesn’t apply to you??”

Well, impossible just walked through the door.

If they actually took a moment to listen, then they’d see it’s even more miserable and frustrating for me.

I hate them not having a simple answer for me more than they can possibly ever understand. I want that too.

And yet I’m the one they want to dismiss as crazy.

Well, give me the Mad Hatter hat, and let’s go for a ride–crazy, my case is. Thankfully, mind is sound.

At least, for now. Too many more of these insults, and I might have to start taking a few anger management classes 🙂

Ugh.

Thank you for being you.

Teddy

On Feb 6, 2012, at 5:23 PM, Dr. D wrote:

Not too surprising but still disappointing .

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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