It’s hard to find the right balance of assuring people I’ll be fine and scaring people so that they take #COVID_19 seriously. I WILL be fine, but I was also sent back to the hospital yesterday. This is serious stuff.
My doctor sent me back to the hospital after I was experiencing chest pains. She feared it was cardiac. There’s an increasing worry about heart issues with #COVID_19 patients like me.
The good news: My EKG was great. It turns out that it is pneumonia in my left lung which is causing me chest pain.
The GREAT news: I am out of the “danger window” for #COVID_19. I’m actually out of the symptom window too. I am now dealing with COVID-19 induced pneumonia.
As with most viral-induced pneumonia, there is not much treatment at this point other than rest. That’s what I’m doing.
Friends dropped off a digital oxygen meter so I can continue to measure my blood oxygen levels.
I am sleeping A LOT. This morning was the first day where I have woken up and it didn’t feel as if my lungs were wrapped in a wet blanket.
I. Can. Breathe.
🌈
I am still having chest pain, and I still get winded at doing the smallest thing, but I can feel the difference.
My doctors have said that if I have three straight days of progress, I can start to go on socially distant solo walks again (with masks and gloves) to get exercise. I can even go to the store.
However, friends have dropped off groceries (I’m good). And...
No one should be going to the store right now unless absolutely necessary. This is a critical time.
Although I’m dealing w/ pneumonia, I’m now entering the immunity phase of #COVID_19. I still have lots of rest ahead, but I am looking forward to using my immunity to help others.
Someone wrote that Judge Amy Coney Barrett would bring “heart” to ‘special needs’ if confirmed to the #SupremeCourt. After showing my respect for the person who wrote that, and understanding of where they were coming from, this was my response:
“Disabled people don’t need lawmakers or jurors to bring “heart” to ‘special needs’. That’s what has led to patronizing policy which has f%¥ked over the exercise of our equality and marginalized our full participation in society over-and-over-and-over again...
It’s one of the greatest things we organize and fight against and we will continue to fight against it until the law and policy makers recognize that we are just like everyone else...
The whole #BobWoodward thing reminds me that our better politicians understand the press will try to ‘get’ them, and that’s a good, healthy thing for our democracy. They respect and welcome that.
—> It’s a BS check.
Bad politicians think the press is there to serve them.
*I should say it’s not as much that the press tries to “get” politicians, but that they don’t regard a politician’s messaging priorities when they are reporting stories. That’s an amazing thing, and when I was a press officer it drove me up the wall.
I hated it, but I loved it.
And the #BobWoodward tapes remind me of #LouChibarro of the @WashBlade. When I was a press officer, he was so masterful in asking a question, letting you answer, then NOT SAYING ANYTHING.
The subject felt compelled to fill the silence with more information.
👨🍳💋
So, while I very much *feel* #SpoonTheory in my being, it all falls apart when trying to use it as a metaphor with others (or as an accommodation strategy for myself). I constantly miscount and lose them.
When speaking, or in meetings, I’m often asked by folks to explain spoon theory. I usually just turn to someone I trust and ask “Could you explain it?”
For myself, I’ve learned to just make myself stop, slow down, or turn down requests when needed — and to be ok with that.
I mean, I’m a huge supporter of spoon theory as a metaphor to explain things to others and as an accomodation peoole can use themselves. It just all gets tangled and anxiety-inducing for me.
I love to laugh at that, though. You kind of gotta.
I often think on how research, medicine, and psychiatry approach and ‘treat’ autistic people today in the exact same manner they approached and ‘treated’ homosexuality until 1972.
Then, thanks to #LGBTQ advocates, homosexuality was suddenly ‘cured’ by @APAPsychiatric overnight.
Where are the endless research papers about the genetics and epigenetics of gay people?
Where are the warnings of “risk factors” for lesbians?
Where’s the pleading for “early intervention” for bisexuals?
What about environmental factors?!?!
We probably know less about gay people now than autistic people. But, we know enough not to funnel everything about LGBTQ people through a pathological frame.
All the questions we ask about autism are still there (and largely unanswered) for LGBTQ people.