personal

personal

Half a million dollars to find mast cell disease

In retrospect it’s humbling to see that doctors spent about half a million dollars over the last 5-7 years to figure out my illness. If more doctors knew about mast cell disease the total cost could have probably been 1/10th of that.

This makes me look forward to the day when doctors have better software, and are willing to use it. (Every time I watch an episode of House I think, “Use a computer!”)

Handstand

I hesitate to say something because this is usually where I get cancer, a rare disease, or a body part has to be removed, but I did a yogic handstand tonight, for the first time since things started to go south in 2011.

(Photo is of Stephen Amell from The Arrow.)

What’s going on?

“And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream from the top of my lungs
What’s going on?”

I may have done that once or twice in the mountains of Alaska. :)

(P!nk also does a nice cover of this song.)

D-Mac on 104.3 The Fan: “To be honest with you ...”

There’s a guy on a local radio station (104.3 The Fan) named Darren McKee (who guys by the name “D-Mac”), and he constantly uses a phrase that drives me crazy:

“To be honest with you ...”

As I wrote in my book, A Survival Guide for New Consultants, you should never use that phrase.

Why? Because using it for some sentences implies that you aren’t being honest with every other sentence that comes out of your mouth.

Why am I always sick? (or, “Why are you always sick?”)

“Why am I always sick?” That’s a question I used to ask myself a lot.

Other people asked it as well: “Why are you always sick?”

I remember one time when I was in the same room as my wife while she was on the phone. She was taking to her sister, who was talking about her husband (my brother-in-law), and their conversation went on for quite some time. Afterwards I said, “Wow, I hope you guys don’t talk about me all the time like that.” My wife said, “No, we just always say that you seem to get sick a lot.”

I’m amazed by people are afraid to make a mistake

I’m amazed/saddened by people who are so afraid of making a mistake that they come up with a million different reasons as excuses to justify why something can’t be done. They always say, “I would do XYZ, but ...”

All I can think to say to them is, “Quit thinking and just do it.” Or, as Cher said in Moonstruck, “Snap out of it!”

Really, what’s the worst thing that’s going to happen? You’re going to die? Well, I have news for you, no matter what you do, you’re going to die anyway. (I’ve gone unconscious seven times over the last couple of years, and believe me, at that point there’s nothing you can do about it.)

Feeling like I have been drugged

When I was very sick in 2015-2016, I used to tell my doctors it felt like I had been “drugged.” When I could see that they couldn’t understand or believe that, I’d tell them that it felt the way you feel after surgery, groggy and woozy.

For the most of this year I’ve been eating very well, but yesterday I went to see a movie (Logan) and had some popcorn. Shortly after eating the popcorn I started to feel sick, and today I feel like I’ve been drugged.

This — as I have learned — is life with mast cell activation disease, known as MCAD or MCAS.

Shaman

The Native American woman I met last week had an aneurysm and brain surgery last year. (She showed me the scar, and she’s fine now.) Before the aneurysm was discovered, she went to a shaman who’s well-known among Natives here. He lit something, made some smoke, did whatever else he does, then looked at her, put his finger on her forehead and said, “You are blocked here.”

Unfortunately she assumed he was referring to a mental blockage, and thought, “No, I’m an open person, he’s wrong.” Shortly after this, doctors discovered the aneurysm right where he pointed.

If you care about someone you have to let them be

“If you care about someone you have to let them be the person they are, not the person you want them to be. Otherwise, what’s the point?”

(From an episode of “Death in Paradise.”)