mcas

MCAD: What an activated mast cell looks like

Somebody was like, “Let’s get a mast cell — a type of white blood cell — from a bone marrow biopsy, magnify it 1,000 times, piss it off, and see what happens.”

The result? Ka-boom! It looks like a little firework went off when it released its histamine, tryptase, serotonin, superoxide, heparin, thromboxane, PGD2, PAF, and other granules.

That’s pretty much what it feels like, lol. I used to tell doctors that it felt like I had been drugged, and indeed, I was.

(Image from this nih.org research paper.)

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 blood disease but still plodding along every day.

Fifty Shades of Mast Cell Disease

Notes from September 24, 2016:

Doctor: I’d like to collect a bone marrow sample ...

*Al runs out of the hospital in a hospital gown, screaming like a little girl*


(later, after they caught me)

Doctor: The next time you break out in a rash, hives, or blisters, I want you to have those biopsied.

Me: Is there going to be any part of our relationship that doesn’t involve a lot of pain on my part?

Doc: Yes, pee in this cup, and we’ll look at it under a fluorescent light to see if you have the same disease that King George III had.

Me: The crazy one?

Doc: Yes.

Me: Cool.

Eight minutes on the elliptical trainer

I made it eight minutes on the elliptical trainer yesterday. That’s pretty much a record since all of this mast cell disease stuff started becoming a problem in 2011/2012.

#The ComebackContinues

Extra fatigue can cause a histamine release (MCAS/MCAD)

Presumably as a result of the MCAS I always feel sick (groggy with flu-like symptoms) when I don’t get enough rest, and I just read this comment from a nurse on the Mastocytosis Society page on Facebook: “Extra fatigue can cause a histamine release.” That seems to confirm what I have been feeling.

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!”)

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.”

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.