mcas

Doctor: I’ve only seen that once before in my life

A funny thing about mast cell disease is when a 60+ year old doctor who is considered one of the best in his profession says to you, “I’ve only seen that once before in my life.” With MCAS, you get used to statements like that.

(This happened in 2016, but I was reminded of it again today.)

Happy Rare Disease Day

From 2015-17 I spent most of my time in hospitals and in bed, and went unconscious seven times. Today I can bench 210 (all the weight on the machine), work the elliptical thirty minutes, and practice yoga every night. Never give up.

Happy Rare Disease Day!

(If you’d like to donate to people working to cure my disease, please visit The Mastocytosis Society website.)

The long road back

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:

Wake up, throw up, have the shakes (MCAS)

I had it in my mind that the worst of the mast cell disease (MCAS) side effects didn’t kick in until later in 2015, but I just saw this memory on Facebook from January 3, 2015:

“The day started off with a bad dream, after which I woke up, threw up, and had the shakes for long time. Fortunately it got much better as the day went on, and I eventually enjoyed a belated Christmas celebration with friends and family.”

I remember the vomiting and shakes started long before this – I learned to keep a trash can by the bedside – so those symptoms would have been well back into 2014.

Doctor struggling to give me a little bad news alvin January 3, 2019 - 9:21am

Yesterday one of my doctors was struggling to give me a little bit of bad news, fumbling a little over his words and giving me a very lengthy explanation. After a little while I told him listen, I’ve been unconscious seven times, I’ve had three fake heart attacks (allergic angina), and I was once told that I had a 10% chance of dying during an operation. What you’re telling me right now, it’s okay, it’s not that big of a deal. He calmed down a little after that.

Symptoms of Mast Cell Activation Syndrome (MCAS)

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 (MCAS)

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.

Places I’m sending money to on Giving Tuesday alvin November 27, 2018 - 10:41am

MCAS/MCAD causes chronic inflammation in multiple organs

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.)

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.