Mrs Spinster

It's such a great tool for being able to use actual metrics instead of vibes for pacing. Or to see when your baseline HR is elevated, so everything's going to take extra effort that day. Or to see when meds are actually working and changing things! :D Hope it helps you!!

One month after her Aug COVID infection she was expending about 20 pacepoints to get through maybe two classes. This week she was using 3 pacepoints to get through four. Being able to see when / how she was overdoing it was instrumental in being able to figure out how to get her back.

I can't recommend the Visible band / app for Long COVID and POTS enough. It's been a lifesaver with figuring out what is appropriate pacing for my #longcovidkid . She has one more week of partial enrollment and then we will hopefully be back full time (right before break).

GROSS.

Aqua background with illustration of five purple-toned hands holding up white protest signs. The signs say: “Today we mark World AIDS Day.” “Our struggles are connected.” COVID isn’t over.” “Disability justice now.” “Silence equals death.” Along the bottom edge are logos for Long COVID Justice and Strategies for High Impact.

It’s World AIDS Day today. We’re thinking about the practices our communities have developed to keep each other alive—and the shifts we need to see in public health, from small groups to large institutions.

Edvard Munch’s Melancholy depicts a man sitting by himself on the seashore, resting his head on his hand, with a look of deep sadness on his face. The text reads, “The Sick Times. You know someone with Long COVID. They need you to ask about it genuinely. By Philip Hoover.”

“The worst part of getting Long COVID was the cruelty of the disease, a punitive unraveling of my health and identity. The next-worst part, and just as heartbreaking, was discovering how few of my friends and loved ones could engage with my illness in ways that felt caring.”

“The problem with Long COVID is that most of society would rather not see it.”

@philipandrewhoover.bsky.social writes that he often feels that he’s living a double life. How can this sick side of him be so central, so enormous, yet so unseen by those who know and love him? bit.ly/4pf80g7

Anyway, today I was reading my chart after my visit to the pulmonologist and would it be petty to send my former dr the "severe persistent asthma"?

I also almost cried again in the appt because it's so rare to just BE HEARD.

The last time I saw my old primary care doctor, he put my diagnosis in my chart as "mild intermittent asthma", which... the asthma part was right. And it pissed me off so badly because I felt like he was minimizing all my lung issues.
(Cont.)

My child is playing outside with her sister for the first time in three months. Her heart rate has radically stabilized in the past week or two KNOCK WOOD and so I am trying not to stress about a crash and enjoy it.
#longcovidkids

My husband got it for me last year. 🫤

Sign the Petition Demand Access to NovaVax for All Canadians

NovaVax for Long Covid...... please sign and share

Ugh. That was my only helpful suggestion, sorry. I love my daughter's, but would also be super frustrated if we kept having problems with it.

Do you have the 2.0 or the original? I've heard that the 2.0 is more reliable. (I also have gotten very responsive emails from them, but haven't had to troubleshoot anything extensively.)

Thank you!

Thank you!!

Thank you!!

Thank you!!

That is great and terrible!

OH no! I hope you get meds and pass the stone quickly!

I can

I can

a woman is covering another woman 's face with her hand and saying `` drink the juice . '' Alt: Drink your juice, Shelby.

I do not know what movie I thought my life would be like when I was an adult, but I'm pretty sure it wasn't M'lynn from Steel Magnolias.

#longcovid #longcovidkids

Ugh.

Hi there.

Just thought we should give you a quick update on how our living with Covid plan is going.

Long Covid is now the most prevalent chronic illness in children.

Women are at far higher risk of long Covid especially women in early 40s.

Women should really get your hearts checked

Apologies

Finally something I *don't* have to worry about!! 😄

@athena4lynn.bsky.social Did you see the PWHL Barbies?

UGH.

I hope Huey Lewis is taking his vitamins and wearing a mask.

What are you doing when it hits?

It's been a rough week.