This week in mast cell disease (MCAS) included temporary kidney shutdown on Wednesday (swollen feet and ankles), insane migraine Thursday, fake heart attack Friday, and hives on Saturday. I used to think it was going to kill me, but now I think it’s just here to torture me.
A friend of a friend posted this false image on her Facebook page, and several people responded with profane comments about AOC. Finally someone else who actually put some thought into it posted this Snopes page showing that AOC never said anything like this. The fact is, the entire commentary was fabricated. Per Snopes:
“The source of the fabricated article, Taters Gonna Tate, is part of a network of sites and social media accounts operated by Christopher Blair, who produces a high volume of junk news and misinformation, much of it inflammatory, which he presents as ‘satire.’”
The sad thing is that some people don’t think, and they seem to want to believe propaganda like this. Two things are going through my mind after seeing this racism and hatred. First, we really need to focus on the state of education in the United States, both IQ and EQ. Second, I think a lot of people have pent-up anger because no matter how hard they work, they don’t have much money, because in America the rich are getting richer and the poor are getting poorer, and the middle class is disappearing.
espn.com has a great story titled How it started: First jobs in football for all 32 NFL head coaches. Below are some of my favorites quotes from some of the coaches.
Ron Rivera:
“I was going to make them need me by working as hard as I could,” Rivera said. “I did everything from taking coaches’ cars to get washed and gassed, picking up lunch. I did all the quality control breakdowns. Basically, from the ground up. I learned what it took to be successful. You had to make yourself indispensable, where they had to have you around to help the team.”
As I’ve learned over the last several months, getting Thyrogen for thyroid cancer treatment can be extremely hard, if not impossible or incredibly expensive. These nine pages of notes to my doctor, my insurance company (Blue Cross/Blue Shield), specialty pharmacies like AllianceRx (Walgreens), Accredo, CVS specialty pharmacy, and the Thyrogen manufacturer, over a period of five weeks demonstrates how hard it is to get Thyrogen when you need it.
After going through all of this, my best suggestion is that if you’re having a hard time getting Thyrogen for your thyroid cancer treatment, call the people at thyrogen.com (ThyrogenOne). Because a lot of patients have a hard time getting Thyrogen, they seem to understand the process better than anyone, including my doctor’s office and my insurance company.
Sadly, this tweet about the president, sexual assault, concentration camps, racism, and the state of America in 2019 is all too accurate.
I watched an episode of Northern Exposure recently and at the end of it I was surprised to see that Stuart Margolin directed the episode. I always enjoyed his characters on The Rockford Files and M*A*S*H, and I remembered seeing him on Magnum, P.I., but I didn’t know anything else about his career, including that he was a director. After reading his Wikipedia entry I hope at some point to see the episode of 30 Rock he did with Alan Alda.
While laying in the hospital bed after my recent surgery, a young nurse came into my room and asked what my pain level was, on a range from zero to ten.
I replied that it wasn’t bad at all, maybe a one or two at most, and I didn’t need any pain medicine.
She said that was great. She said that a lot of people immediately say they’re at a nine or ten.
I replied that I’d never say anything that high, I always thought a nine or ten should be saved for something really bad, like if you were just stabbed or shot.
She said, “I know, right. Or maybe broken bones ... or a heart attack.” She paused and then said, “Lately I’ve been wondering if giving birth is a 9 or 10.”
There is some talk in this Rolling Stone article that Bruce Springsteen was on the verge of failure when the song “Born To Run” was released. Springsteen acknowledges that, but also adds, “I don’t know if it would have finished us — because what the [bleep] else were we going to do?”
I tend to look at that as perseverance: “Okay, you don’t like my work? Well, I’m not going anywhere, I’m going to keep working at it.”
When I first went to college I wasn’t a Springsteen fan at all — I barely knew who he was — but then I heard Hungry Heart, and became a fan. These days Born To Run, Hungry Heart, Badlands, Thunder Road, Pink Cadillac, Brilliant Disguise, and Secret Garden are some of my favorite songs. And Santa Claus is Comin’ to Town is one of my favorite Christmas songs/performances.
According to WebMD, I may be pregnant. Fatigue, nausea, drastic changes in how things smell, food aversions, mood swings ... I've got most of the symptoms.
~ A Facebook post from July 9, 2014, after I had radiation treatment
Impassioned lovers
wrestle as one
Lonely man cries for love
and has none
New mother picks up
and suckles her son
Senior citizens
wish they were young
~ Nights in White Satin
If you seem to value other people’s opinions over yours, this is another good article from mindful.org: How to Avoid the Empathy Trap.
“When the clutter of compulsive thought is cleared away, the light of awareness becomes powerfully bright.”
(Ms. Rasmussen co-wrote the book, Practicing The Jhanas, which is one of my favorite meditation books.)
Sometimes people write to tell me that they like my writing style, that I’m good at explaining things. Other people write and say that if they wrote a book, they would have written it just like mine.
The truth is, when I first started working with Scala I fell in love with the language, so wanting to write about it was easy. After that, I’m not that smart, so I have to break complex things down so I can understand them myself. So I think that by breaking things down and looking for meaningful examples, people seem to appreciate what I’ve written (or I hope they do).
After I wrote the Scala Cookbook and people sent me notes like that, I struggled with writing for a little while. Then I decided to just try to write for a younger version of myself and ignore what other people were saying. I just ask myself, “Would this have helped Al 2+ years ago?” Since then I’ve been fine.
Sometimes when I get really sick with the MCAS symptoms it becomes very hard for me to communicate. If I’m with someone else during those episodes and they look at me struggling I think, “I’m still Al, I’m still in here ... I just can’t get the words out.”
I think sometimes that’s the way it is for people when they get older and slow down, or have dementia, I imagine they have those thoughts as well.
We were in the middle of having some bad storms so I walked up to my living room window to see what they looked like. When I saw the clouds I started to say, “Wow, that’s some nasty looking sh-,” when a close lightning bolt threw me back across the room. Lesson learned: Don’t curse at Mother Nature’s designs.
~ June 28, 2013
It’s great to see wealthy people trying to save the environment. Per this CNN.com story, “Pink Floyd's David Gilmour auctioned 126 of his guitars for a record-breaking $21 million at a New York charity auction Thursday to fight against climate change.” Indianapolis Colts owner Jim Irsay bought the “Black Strat” for ~$4M, and apparently he’s going to make it available to the public.
Having sat next to a famous cello player's cello on a flight back from Alaska, I wonder what the musicians in Alanis Morissette's Uninvited video think about all the smoke at the end of the performance.
The video: http://www.youtube.com/watch?v=FjTB6EG3xGo
“Since I had started to break down all my writing and get rid of all facility and try to make instead of describe, writing had been wonderful to do. But it was very difficult, and I did not know how I would ever write anything as long as a novel. It often took me a full morning of work to write a paragraph.”
~ Ernest Hemingway in A Moveable Feast
Over time I’ve discovered a number of things that I have no memory of from the years 2014 to 2016, when I was at my sickest with the mast cell disease. Apparently I created this image and wrote these words on August 24, 2015. (Here’s a link to the original post, if you’re into that sort of thing.)
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever Gods may be,
For my unconquerable soul.
In the fell clutch of circumstance,
I have not winced nor cried aloud.
Under the bludgeonings of chance,
My head is bloody, but unbowed.
Beyond this place of wrath and tears,
Looms but the horror of the shade,
And yet the menace of the years,
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.
~ Invictus, by William Ernest Henley
(which I learned about via Leonard Nimoy)
