Switching gears: I can feel my entire aura changing

So much of my intensity over the last seven years, “I’ve got to get the answer, I’ve got to get the answer”,

was because I was looking for someone to figure out how to cure me so I could return back to my life.

The life where I was making a movie. The life where I had all of these dreams of this great Hollywood career. And arrogantly or not, I’m talented enough it was there waiting for me.

Now suddenly I’m faced with this new transition…I see I’ve now made it to the end of the rainbow, and I’m facing the reality there isn’t a nice fairy tale ending on the other side of all of this misery.

As I sat in my doctors office on Thursday, semi confined in the small quaint room with all the traditional markings–‘the physician’s examining room’–I said, plainly and factually,

Today is the beginning of the rest of my life. This is it.

And it’s not going to be pretty.

Ya, it could be worse. It can always be worse.

But today I know beyond a shadow of a doubt the only way I’m going to be able to make it to that one distant day where they do find a cure,

Is I have to surround myself with the best doctors I can for my case. It’s the only chance I have.

That doesn’t necessary mean ‘the best doctors’ out there. I’ve seen of some ‘the best’ in Los Angeles and they were as useful to me as a computer is to a starving homeless man.

If a doctor isn’t willing to listen and trust, then they can’t be my physician. It’s so simple, yet so difficult in our worthless ‘evidence based medicine’ culture we currently live in. That’s great for those patients whose tests accurately reflect what’s going on in their bodies–‘the evidence’ works for them–

but what about the rest of us? Those whose immune systems won’t register an elevated wbc?

Even normal patients slip through the cracks every day. That’s why we all need physicians who trust. And care. And maybe even love us a little too.

And that’s just not easy to find.

It’s time for me to strap down and make the best of the reality of what is.

Even if I’m not happy about it.

I need to build my lifeboat.

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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