mcad

Passing out at an ice cream shop

I was just reminded of a “funny” event from the worst of the mast cell activation disease days (before doctors knew what I had). I was just released from the hospital for something — maybe from my second fake heart attack, I don’t remember for sure — and I thought, “If I’m going to die before they figure out what’s wrong with me, I’d like to have a chocolate milk shake.”

So I drove to a placed called Sweet Cow in Louisville, Colorado, ordered a milkshake, and then began going unconscious before the order could even be completed. While the poor guy was making my shake I walked out of the store, sat on a bench outside, and put my head between my legs, hoping I wouldn’t pass out. The guy who was making my shake was probably only in high school, and he eventually brought the shake out to me while I sat there with my head between my legs. We had some sort of conversation, the gist of which was I was trying not to pass out and him saying that the milkshake was free.

With the help of a few people I eventually stumbled out of there and made it home. Such was life with the worst of the mast cell disease.

P.S. — These days I’m much better, thank you.

No thoughts in my mind, just peace

Before doctors figured out that I have a rare blood disease called Mast Cell Activation Syndrome (MCAS), I went unconscious seven times, typically vomiting while I was unconscious.

Right before the first event I was stumbling around my apartment like I had been poisoned, splashing cold water on my face, and generally just trying not to die. Despite my efforts, I went unconscious.

Right before the second event I thought, “If I live through this one, I need to update my will.”

Right before the third event I thought, “Apparently I’m going to die soon. I just want other people to be happy, and if I live, I want to help them however I can.”

After that, for events #4 through #7, along with three subsequent cases of allergic angina — what I call “fake heart attacks” — I had no significant thoughts in my mind, just peace.

These days when something bad happens I recall those 7-10 events, and know that I could have died during any of them. When I think that way, all of today’s little problems seem insignificant.

It’s about how hard you can get hit and keep moving forward

“And when things got hard, you started looking for something to blame, like a big shadow. Let me tell you something you already know. The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That’s how winning is done.”

I enjoyed this quote from Rocky Balboa the first time I saw the movie, and I appreciate it even more now after getting my a** kicked by this f-ing blood disease, but still grinding along every day.

Recovering from colectomy surgery

July 15, 2018: A little less than three weeks ago I had a type of surgery known as a colectomy, a procedure where a portion of the colon is surgically removed. The background of the story goes like this: Because of pain I was having whenever I tried to eat, I haven’t been able to eat solid foods since October, 2017. After eight months of hoping the problem would heal itself, I was finally forced to give up that hope when it became apparent that surgery was the only hope for a relatively normal life.

Cause of trembling eyelid

When I learned that I have Mast Cell Activation Disease (MCAD/MCAS), I learned that it is a potential cause of a a trembling eyelid, which is technically known as a blepharospasm. The area under my right eyelid started trembling at least fifteen years ago, but no doctor ever knew the cause of it, and they would usually just say, “Get more rest,” which of course had nothing to do with the problem. As I learned from reading this book about mast cell disease — which is where the image comes from — it turns out that there are ~5,000 mast cells per cubic mm of conjunctival tissue, i.e., the inside of the eyelids.