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.
My red pencil is one of my favorite possessions. When I get it out it means that I’ve just edited a print version of something and now it’s time to type up the corrections. It also means that I’m getting close to releasing a final version of whatever book I’m working on, which is also a good thing.
Last night I watched an episode of Father Brown where Mrs. McCarthy was judgmental about something her god-daughter did. (She was the girl’s godmother.) In my mind I thought, “Wow, she sure is judgmental and intrusive in the girl’s life.”
Then this morning I woke up and saw some photos on Facebook involving one of my young relatives that made my skin crawl. When I saw the photos I realized I didn’t know them at all, and I hated what they were doing. I wanted to grab them by the ear and yank them out of those pictures.
So it turns out that giving unconditional love is really hard when you see people you care about doing things that you think are really stupid.
I saw these Talk Nerdy To Me socks in a store window recently. For more information, it looks like they have them here on Amazon.
Probably the most important lesson I learned from aimlessly wandering around Alaska and the Lower 48 for five years is that if you treat complete strangers as long-lost brothers and sisters that you’re meeting for the first time, the world magically becomes a better place.
When I met my mom, Sister #2 and her husband in New Mexico in 2017, I brought my mom a bunch of junk food. The Twinkies didn’t make much of an impact on her, but when Sister #2 gave her a chocolate cupcake, my mom’s approximate words were, “OMG, this is the best thing I have ever eaten in my entire life.”
From this CNN article, “Older people with higher-than-average blood pressure have more markers of brain disease than their average-pressure peers, according to a study published Wednesday in the journal Neurology ... researchers saw increased signs of areas of dead tissue caused by a block in the blood supply to the brain, when looking at postmortem tissue under a microscope. Autopsied brains also revealed that higher-than-average blood pressure is associated with one marker of Alzheimer's disease.”
Today a person did something that upset me. For a few moments it really bothered me and I thought, “Wow, this person is being a real jerk.” Then I remembered the phrase, “Every obnoxious act is a cry for help,” and I realized that this was this other person’s way of saying that they were hurting, and it helped me calm down in regards to them.
As a brief update, I’m home from the hospital following my surgery last week. I’m not back to writing any software or books, but hopefully I’ll start getting back to work next week.
“She had been born with a face that would let her get her way
He saw that face and he lost all control
All control”
A thing I love about Bob Seger is that his lyrics and the enthusiasm of his music remind me of being a much younger man, maybe the end of the teenage years and the beginning of the 20s. These lyrics in particular are from his song Hollywood Nights.
Two thoughts of the day:
Nobody owes you anything. I’m often surprised to hear people tell stories about how they’re butthurt because they feel like someone owes them something. (Typically they think friends and family members should owe them something.)
The only time you really lose is when you don’t try. A lot of people have interesting ideas, but never do anything with them. I think I lost nine games as a baseball pitcher in high school, but I won a lot more games than that, and it would have been a much bigger loss if I thought, “Gosh, I could be a great pitcher if only someone gave me a chance.”
Note: I’ve disabled comments and the contact form on this website until after I recover from my next surgery.
When I began reading the book, Never Bet Against Occam, I told my doctors that it was like reading my biography. At the very least it read like the biography of my last few years and hundreds of thousands of dollars in medical expenses, trying to find out why I kept getting very sick and passing out, and why my lab results were jumping around like a rabbit, first showing signs of one illness and then another.
I just noticed that another reviewer wrote, “The book was like a romance novel that I could not put down!” I won’t call it a romance novel, but I know that once I started reading it, I didn’t put it down either. I was smiling at the stories I related to, and also wondered, “Why don’t my doctors know about mastocytosis and mast cell activation disease?”
For more information, here’s a link to Never Bet Against Occam on Amazon.com.
This “What’s in a mast cell?” slide by Tiffany Blackden implies that mast cells contain over 100 different molecules that a) protect the body, but b) also cause inflammation.
In what will hopefully be my last health-related post for a long time ... after seeing 11 specialists and making about 15 ER trips, I think that I/we finally have a good idea of what is happening.
Just like finding a bug in software, once you figure out what’s going on it explains everything, including the passing out, the raccoon eyes, getting sicker when eating ‘healthier’ food, feeling like bones spontaneously break, bad reactions to the statin medication and the last MRI contrast dye, the fake heart attack, everything.
And finally, it’s time for a nice, long party. :) I started celebrating today by going up to RMNP, where it snowed for me.
(a facebook post from september 15, 2016)
“Mast cells tend to hang out at the body’s environmental interfaces (to best serve their defensive role).”
That’s a short but very important quote from the book, Never Bet Against Occam: Mast Cell Activation Disease and Chronic Illness.
Do you have dry, itchy, gritty eyes? Ever have a dry cough, where it feels like no matter how much or how hard you cough, you can’t get rid of the itchy feeling in your throat? Or how about itchy skin? All of these are your body’s “environmental interfaces,” where mast cells are trying to protect your body. (These are also symptoms of mast cell activation disease.)
This image is another good answer to the question, “What are mast cells?” Note that mast cells can release tryptase, histamine, serotonin, superoxide, heparin, thromboxane, PGD2, and PAF. The image comes from this selfhacked.com page.
“Mast cell disorders are neoplastic disorders, which means the mast cells multiply continuously over the patient’s lifetime. As with cancer cells, mast cells do not die, disappear, or cease to function, on their own.”
iamast.com offers these “Six rules of mast cells” on their beginners/terms page.
The Farnam Street Blog has a nice set of core principles in regards to “all that we write about, think about, and strive to achieve”:
- Direction Over Speed
- Live Deliberately
- Thoughtful Opinions Held Loosely
- Principles Outlive Tactics
- Own Your Actions
