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.)

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: “Al, why are you always sick?”

I remember one time 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 say that you seem to get sick a lot.”

Mastocytosis, mast cell disease, and thinking (“brain fog”)

One way to describe what I was going through was “brain fog,” or having difficulty thinking clearly, articulating my thoughts, and remembering anything. This quote comes from the mastocytosis.ca web page:

“When the symptoms occur, it is common for patients to have difficulty thinking clearly ... mast cells are in every organ including the brain.”

Mineral and bone problems with Chronic Kidney Disease (CKD)

This nih.gov page has good information on mineral and bone problems (pain, easily breaking) for people who have Chronic Kidney Disease (CKD). I talked to my doctor several times within the last year that it felt like my bones were spontaneously breaking for no apparent reason — such as when I was sitting in a chair — and even though she knew I had CKD, she didn’t know any of this information.

Now being tested for “Systemic Mastocytosis”

As of this past Thursday, June 23, 2016, I am now being tested for something called “Systemic Mastocytosis.” rarediseases.org describes this illness as, “Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs (liver, spleen, gastrointestinal tract and lymph nodes).”

From the Mayo Clinic website:

What disease do you think we have?

Me: Goodnight.

Brain: Pssst.

Me: What?

Brain: What disease do you think we have?


(quoted from multiple people on twitter)

My definition of CFO Disease

My definition of "CFO Disease"

Every CFO that can create a spreadsheet thinks they are a programmer.

As you might guess, this had to do with a long conversation with a CFO today about how to do my job, and how programming seems so easy.