I’m glad to say that I’ll be going back to regular consulting work again very soon. If you’re interested in the gory medical details that led me to quit consulting work (and write five computer programming books and a couple thousand blog posts), here you go:
mast cell disease
This image shows symptoms of Mast Cell Activation Syndrome, from this article. I can personally attest to abdominal pain, cramping, bloating, nausea, vomiting, difficulty digesting certain foods, muscle and bone pain, muscle weakness, nerve pain, headache, neuropathy, difficulty concentrating, reduced attention span, brain fog, itching, rashes, hives, inflammation, swelling, flushing, inflammation of the eye or conjunctivitis, trouble focusing eyes, itchy and watery eyes, a burning sensation, ulcers on the tongue or in the mouth, coughing, wheezing, difficulty breathing, runny or stuffy nose, sneezing, sinus pain or pressure, enlarged spleen, elevated liver enzymes, high cholesterol, rapid heart rate, abnormal blood pressures (either too high or too low), fainting, anaphylaxis, chemical and environmental sensitivities (and more).
Meet The Teenage Girl Who Is Allergic to Almost Everything is a good story about the blood disease I have (MCAS, or Mast Cell Activation Syndrome). I’m very fortunate that I didn’t have bad symptoms until the last 7-10 years or so, and removing part of my colon recently has also helped reduced the symptoms. It would major-league suck to have this disease when you’re 15 years old.
Per Dr. Tania Dempsey, one of the leading researchers in the mast cell field, “MCAS/MCAD causes chronic inflammation in multiple organs/tissue/systems, with or without allergic-type problems and sometimes even abnormal growth and development in various tissues, and there can be acute flares of symptoms.”
Anyone who has seen the inside of my body through MRIs, CT scans, and ultrasounds will agree with that statement. (I write that with Surgery #8 coming up in about three weeks. As usual, a very experienced doctor used words like, “I’ve never seen that before,” “abnormal,” yada yada yada.)
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.
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.
“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.
This slide on “Mast cell-associated disease-specific pain syndromes” comes from doctors Tania Dempsey and Lawrence Afrin. I don’t remember exactly where I saw it, but it was probably on The Mastocytosis Society Facebook page.
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.