mast cell disease

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

Vitamin D helps stabilize mast cells

This nih.gov article states that Vitamin D helps to stabilize mast cells. I always thought my Vitamin D levels were very low because of mast cell disease, but maybe something else caused the Vitamin D problem which made the mast cell problem worse,  dunno.

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!”)

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.

Ratio of women to men who have mast cell diseases

From what I can tell by the interactions on the The Mastocytosis Society group on Facebook, there is at least a 10:1 or 20:1 ratio of women to men who have mast cell diseases. Or, more accurately, those are the ratios of people who (a) know they have mast cell diseases and (b) interact in this group on Facebook.