Chaos.

Well we got the report from the EEG specialists, and the one word they had to describe my brain activity was "chaos". Which is really close to what doctors have said about my heart, my endocrine system and my autonomic system. We already knew my immune system is a homicidal b*tch, but she's actually been behaving relatively calmly with this mess. Unless it was all triggered by one of my auto immune diseases (highly likely) in which case I'm going on immune suppressants for life.

Basically what this new report says is that in the brain you have two "Insula" (Insular lobes, Insular cortex are two other terms for it) tucked around the temporal lobe, and these regulate autonomic responses. Like with many sections of the brain the right and the left control different things, and typically one side is dominate. (All of this is what I was told. I am not a doctor, a nurse, a PAC, a physical therapist or in school for any of the above professions. If the information is wrong it's my interpretation and my mistake.) With my brain both sides are active and messing things up. There was a section on my EEG that was supposed to stay stable (started at 5.5) and jumped all over the place.

Do I really understand any of this? No way in Hell.

My doctor's interpretation of everything was a couple possibilities (as ever). First, sometimes the brain acts like this when there's a tumor in the pituitary gland. They're really hard to diagnose, but rarely cancerous. This said, they still have to be removed. Through the nose. Egyptian style. If this happens I'm making an Egyptian playlist. I'm open to song suggestions.

Also, as my cousin and I were joking about, if I end up having brain surgery as well as spine surgery, the next time someone complains to me about a cold or mono they will have something thrown at them. I have good aim. You've been warned.

A pituitary tumor would explain all the endocrine symptoms. One of the other possibilities is something else endocrine that's been missed; since there are literally reams of tests for the endocrine system that HAVEN'T been done honestly anything's game. It could be anything and speculating would just lead to hyperventilating and freaking out after reading pages of horror stories. I'll pass.

The other option (so far..) is something autonomic or neurological that somehow nine neurospecialists missed or didn't follow up on. Would I be surprised? No.

Essentially, we don't have any new information, and we won't until Monday at Cleveland. I'm trying to keep a sense of humor about this, and the love and encouragement I've been getting from everyone means more than you could ever know. I've stopped counting the odds against all these insane diagnoses, there's no point. I'm in the billions. Of billions. Every doctor I've seen (that listens) has told me they've never seen anyone with this many auto immune diseases, even though the diagnoses were done by biopsies and can't be refuted. Having something like this happen to you is the most humbling, terrifying, isolating experience. You lose the ability, and the want to judge people. You can never know what horrors they've seen, faced, fought back, overcome. I've seen the purest courage and resilience in the eyes of a three year old. My point is be kind. Enjoy your life. Love those your heart tells you to love, not who society says is "appropriate". Society is full of shit. Be yourself, because at any second of any day you could lose it all.

Live without regrets. If you've screwed up, find the courage to admit it. Live so that if, God forbid, your life is taken from you, you can look back without what-ifs clouding every experience.