On The World of Now
How are you?
Are you finding the world of now to be one you actually relate to?
Mass panic over an untreatable medical problem that is ruining quality of life?
Yes!
Let’s call it untreatable, since the treatment is hope there’s a ventilator available, and hope you don’t die even if you get on one.
Kinda like just suffer with Ehlers-Danlos as you chase drugs and surgeries and exercises and antihistamines that don’t fix anything.
Right.
I’m wondering if at the end of this, people might understand me.
Because I don’t talk about my old, disabled life. Nobody gets it, so I keep to myself. Usually, someone thinks it’s cute that my husband took care of me or something. Yeah, sure was cute. Dealing with me screaming in pain year-in and year-out, while I hardly had the energy to water one plant. Yeah, I was just relaxing at home, enjoying my hobbies and free time. I don’t want to argue.
As it’s hard to find a doctor that understands how bad EDS is, I cannot expect normal people to empathize. But maybe in a post Covid-19 world, they will.
Until then, I just put it all here for you, Dear Reader.
There’s only one of you.
I appreciate your eyeballs.
My coronanxiety is high.
It’s hard to live like this.
Listening to the news every morning. Not able to socialize or go to work. Living in fear of what may happen next to the entire planet and to people we know.
Not that I have much to complain about. I sure don’t.
For one thing I think I got the coronavirus and had a robust immune system response and bounced right through it.
I had a few days of some very wacky symptoms, a week after close contact with someone who later tested positive. Can’t be sure until I get what is called a Serology test, to see who has antibodies for this thing. First, someone would have to make one. But that would be the beginning of bringing the economy back to life. Find out who is safe to be released from quarantine.
And then there’s the fact that every day of my life now is incomparably better than every day of my life when I was disabled by Hypermobility Ehlers-Danlos Syndrome. I am spending my free time exercising a ton, learning, enjoying hobbies, even though things seems so bleak.
When I used to be so sick I could get nothing done. I had no energy, no brain power and all pain. It was maddening. So, no, I have nothing to complain about now.
Except I had all these great plans, I had stuff lined up, stuff I hadn’t done before . . . then the world got shut down. Gone up in smoke. Will those opportunities be there when quarantine ends? I don’t think so.
So I have a new strategy.
In my old life, I would talk to myself before I even got out of bed.
I’d tell myself
“Today, I am going to find something and do anything to make my health better. This will not be the story of my life.”
I did this every single day, until it was automatic. Until I didn’t have to try anymore. I just became the person that would cross the finish line.
Not positive thinking. Not faith. Not waiting for anyone else to do anything for me.
I wouldn’t get out of bed until I felt it.
I refused to give in to hopelessness, which was hard.
I cried pretty much every night from pain, suffering and frustration.
Nonetheless, I became totally focused on saving myself from my rotten case of hEDS. It worked.
So, goddamnit, in the midst of this global meltdown, I’m going to force myself to focus on how to improve my life now and stack the odds in my favor to what my post-epidemic life could be.
“Today, I will plow through my list of projects with determination and a f*cking smile 😃 on my face.”
Won’t you joint me?
And let’s try to breathe through
Present circumstances, which are getting to me.
Like when the pathological liar occupying the White House said the math didn’t add up, hey what are New York hospital staff doing with all those masks they’re running out of! Somebody better investigate!
I do try to ignore him, but he’s hard to avoid. Like an orange hazard cone.
No, Mr. Prez, you are the one who can’t add. Or think.
No evidence for Trump's suggestion that masks are 'going out the back door' of New York hospitals per NBC News.
Those overworked, dangerously exposed and dedicated front line healthcare workers are treating the f*cking sick, many of whom are ending up dead, stored in those refrigerator trucks outside hospitals awaiting delivery to their final resting places because hospital morgues are full. #MakeAmericaCovid
Hospitals don’t even have enough protective equipment to revive patients anymore who go into cardiac arrest because that process spews virus-infected bodily fluids everywhere. So they don’t. IMO doctors and nurses do not owe us their lives, only their best.
Orange, we know you hate New York (and California) because they voted for Hillary, and the greatest injustice in this universe is someone not liking you. That’s why everyone speaks openly about your bad case of pathological narcissism, save the sycophants.
Listening to the game show host, I have come to think a malignant narcissist is as psychotic as a schizophrenic, even though his break with reality is more subtle than a schizophrenic hearing voices. DT is very paranoid and hallucinates a reality that serves his fragmented, needy inner world. Sane people don’t do that. We know life ain’t always what we want it to be and people don’t always like us, no big deal. #25thAmendment
Sure would sleep better if someone could organize and lead the country. #TrumpVirus
CoronAnxiety
To deal, I went back on a drug I really liked called Campral (Acamprosate).
I took it for a few months a while back for anxiety. You can read studies on it for the treatment of anxiety here and here.
It’s subtle. Doesn’t give you the sedation or bliss of a benzo.
I thought it had a nice overall effect of improving anxiety. It stuck when I went off.
I only took one per day. I’m pretty sensitive and that was plenty.
Got some insomnia and nighttime muscle spasming when I started on it this time, as happened last time. But it passed.
It is making me feel better.
Unfortunately can cause stomach upset.
Malaria Meds for Covid-19
Speaking of off-label use of drugs, WTF with Orange commanding the FDA to give permission treat Covid-19 with a malaria drug which kinda did nothing for the tiny group of coronavirus patients it was given to.
Orange couldn’t deliver on that wall he said Mexico would pay for, complete with a moat and dragons (was Mexico going to pay for that?), so why not make more grandiose, absurd promises? Keeps the true believers believin’.
Actually this drug is very scary. It has some severe side effects that you do not want. Like death.
But, Dear World, as a patient with an untreatable rare disease, I do understand your desperation. Try anything! Something’s gotta work! Supplements! Gluten-Free! Meditation! Getting my joints fused!
I enjoyed this tweet about it:
And this post: Hydroxychloroquine and azithromycin versus COVID-19: Grift, conspiracy theories, and another bad study by Didier Raoult from Science Based Medicine.
The Abusive Relationship
Meanwhile, I’m sure you heard that the Misogynist-In-Chief was stopping medical supplies from being shipped to Michigan.
And also other blue states, while giving red states everything they asked for plus more.
Cuz that state has a young, female, democratic governor. So residents of MI deserve death. As do all those second class Americans (plus fellow residents) who don’t care for the current occupant of the White House. #NonTrumpersLivesMatter
Orange criticized MI Governor Whitmer for her “lack of response” to Covid-19. Eyeroll. Orange is unable to take responsibility for his actions. He just projects it onto others. It’s very tiresome.
Then days later Orange approved Michigan’s emergency declaration. He showed her who is boss.
I think the game show host has a crush on Governor Whitmer.
He definitely has a persecution complex, so he always has to be starting a problem, never fixing one. #MakeAmericaCovid
This is the pattern of an abuser:
Denying your legitimate needs
Lying to others about what he did
Saying you are the problem
Making you feel more desperate
Then and only then . . . giving you what he should have at the start, probably in crumbs and with more insults
At this point, you are exhausted and emotionally drained but feel grateful. Hey, you finally got a thimbleful of what you needed! Relief! The gratitude plus she stress of the trauma bonds you to the abuser
You have unconsciously lowered your standards
You are now ripe to accept worse treatment from abuser, and may even overlook it altogether in the future
UNTIL YOU WAKE UP but not everyone can fight back against an abusive dominator who holds the strings over you
Everyone who witnessed this has subconsciously been trained on what behavior earns favors, or even survival from the abuser
This cycle of abusive treatment produces such highs and lows in the victim, it creates similar responses in the brain, like opioid addiction
Stress Eating Chocolate
My morning routine is now news, coffee, heavy exercise, upload my resume anywhere, and chocolate puff pastry stress breakfast. Came out like a homemade chocolate croissant. Delish.
Good News
Got my hands on a big sack of yeast.
Will trade it for toilet paper, to convert to gold bars, to exchange for flour.
I’ll save some of the yeast in case it all works out.