Ukrainian-American. Theater/film/music/book lover. Former arts finance girlie. Left-ish Libertarian-ish. Life on pause due to disabling #LongCOVID.
White Plains, NY
Joined October 2008
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Ok, real talk: I am not a doctor so I cannot advise you about risky compounds that haven’t had many in-human trials like experimental peptides. I’m happy to experiment on myself and report outcomes of my particular n=1 situation so as to share ideas for people to explore for care
Olenka Sayko retweeted
My heart goes out to Beth for doing this. I really hope the payback doesn’t last too long. It’s a very sympathetic article and she articulated her points so well 🩵
ALT Beth Dobbin is so determined to raise awareness of the illness that has decimated her life that she is speaking out, despite knowing it could trigger a brutal deterioration in her health. Five years ago, she ran for Great Britain at the Tokyo Olympics. Now, at 32, she spends more than 22 hours a day in bed. "I've done little things like attend a blood test at the doctors and been in bed for months after. So doing this interview, chatting away for 30 minutes, that could have an impact on me in 2027," she says. "But I felt like it was really important to do that to get the message out." She now only gets out of bed to eat and use the bathroom. Dobbin has been diagnosed with ME, or myalgic encephalomyelitis - a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more.
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
Olenka Sayko retweeted
Lots is happening in the world of clinical trial reform!
I decided to put together a list - all of this was announced since June - and shared some thoughts:
abundanceandgrowth.org/p/is-…
Olenka Sayko retweeted
In 3 months, I’ll get another major neurosurgery: Craniocervical Fusion, Extradural
Decompression of the LLCT/MTH, Bilateral C1 Tubercle Resection
This procedure will be out-of-state, costly and have a long recovery
Please donate and boost! Ty
gofundme.com/f/help-emily-ge…
Me: “Perhaps we should examine how language reinforces normative expectations of disabled bodies.”
Twitter: “SHUT THE FUCK UP.”
Forgive me, Father, for I have discoursed.
I think there’s something particularly fucked up about putting “Born with Cerebral Palsy, he never – ever – allowed that challenge to be an excuse for anything” in a tribute to a disabled person who died by s*ic*de.
Bryan Cranston pays tribute to RJ Mitte
“I’m in deep despair as I write this tonight. RJ Mitte, my sweet son on 'Breaking Bad' has died. I met him when he was only 14 years old when he was cast as Walter White Jr., a part he played with such joy and enthusiasm. Born with Cerebral Palsy, he never – ever – allowed that challenge to be an excuse for anything. He met the demanding shooting schedule head on with great determination"
“Always listening to the advice that his TV parents (Anna Gunn and myself) gave him – but being a teenager, sometimes mischievously ignoring the counsel in order to learn the hard way… He was one of the stars of a hit TV show – but still a kid. That kid was pretty raw when we started shooting the pilot in February of 2007, but little by little we watched him grow into a really fine actor. He parlayed his experience on the show to be a vocal advocate for performers with disabilities, and was the head of a philanthropic organization with a focus on helping the disabled community. All that promise and potential now is such a loss"
“It is especially devastating to hear that he took his own life,” he wrote. “Why? We were texting each other just a few weeks ago – figuring out when we could meet for lunch. I don’t know if that lunch would have changed his future… But I do know that I loved him, and thoroughly enjoyed being with him throughout the years on the series, and after the spotlight on 'Breaking Bad' dimmed… I’ll miss you, son"
Being “one of the good ones” means you're industrious, cheerful, determined, grateful, resilient, and, above all, not too much trouble. And that’s a heavy weight that the abled force disabled people to carry just to be allowed to exist.
NYC disability parking permit denied. The documentation- letter from my dr saying “she needs a wheelchair when she leaves the house. Last time she walked from a parking lot to my office, she fainted”- doesn’t show I have a “permanent disability that seriously impairs my mobility”
The funny thing is that my New York State disability parking permit was approved with no issue.
NYS: Yes, this person’s disability warrants accessible parking
NYC: Interesting. But have we considered making the wheelchair user with ME/CFS do an exercise stress test?
Does anyone know of a talk therapist in the NYC area who’s knowledgeable about Long COVID, but also childhood trauma, etc, and who does zoom sessions?
About my brilliant mother-in-law, Caroline, whose funeral was today. She was an exuberant force into whose orbit one couldn’t help but be drawn.
I’ll miss sitting at dinner with you, listening to music & having you hold up your finger & announce with delight, “That’s our song!”
Caroline Bienstock, Former President/CEO of Carlin Music, Dies at 68
billboard.com/pro/caroline-b…
