melondc - Network

There's a crisis with Mastadon dot social?

There's a crisis with Mastadon dot social?

#COVID #COVID19 #CovidIsNotOver #COVIDactivism <<new hashtag New Yorkers, take action to #KeepMasksInHealthCareNY! There are several...

#COVID #COVID19 #CovidIsNotOver

#COVIDactivism <<new hashtag

New Yorkers, take action to #KeepMasksInHealthCareNY!

There are several activities you can get involved with!

#KeepMasksInHealthCare
http://bit.ly/KeepMasksInHea

#COVID #COVID19 #CovidIsNotOver #COVIDactivism <<new hashtag Hi there! Matt Cortland, a disabled lawyer/activist, is gathering and...

#COVID #COVID19 #CovidIsNotOver

#COVIDactivism <<new hashtag

Hi there! Matt Cortland, a disabled lawyer/activist, is gathering and submitting comments to the CDC. He has had meetings with Biden admin about people with chronic illness and disability, but thinks pressuring the CDC is a better way to go.

If you're willing to write a letter

https://www.patreon.com/posts/will-you-write-81869195

I am using an AI-powered SEO app that helps choose keywords and questions by scanning conversations across social media and search queries....

I am using an AI-powered SEO app that helps choose keywords and questions by scanning conversations across social media and search queries.

I put COVID in there and the top queries are NOT what you would think. People seem to know IRL that COVID is not over.

#CovidIsNotOver #COVID19

ANOTHER BOOSTER IS BEING APPROVED FOR AT-RISK PEOPLE (and anyone probably who asks)...

ANOTHER BOOSTER IS BEING APPROVED FOR AT-RISK PEOPLE (and anyone probably who asks) SOON

https://www.washingtonpost.com/health/2023/04/03/covid-booster-shot/

#CovidIsNotOver #COVID19 #chronicillness

there's a pandemic and the Cure is going on tour 😭

there's a pandemic and the Cure is going on tour 😭

24% of DC's Health Marketplace has been compromised. That's social security numbers, names, addresses, insurers, everything.This...

24% of DC's Health Marketplace has been compromised. That's social security numbers, names, addresses, insurers, everything.

This story needs to get more play. Members of Congress are affected.

https://thecyberexpress.com/dc-health-link-data-breach-170000-pii-at-risk/

#DC #healthcare #hackers

One person I still check in on via Twitter has finally seen the spinal surgeon. She is a sweet, 43-years-young woman with almost every...

One person I still check in on via Twitter has finally seen the spinal surgeon.

She is a sweet, 43-years-young woman with almost every section of her spine messed up!!

It's a long health journey for her, and she needs multiple surgeries.

Her name is Anna. She accesses twitter on her phone. She's got a lot of brain fog etc and can't muster leaving right now.

She is on the urgent surgery list.
I am sharing her "wish list" here. Please help if you can.

https://www.amazon.ca/hz/wishlist/ls/UC5DMJN2RZ7C?ref_=wl_share

#MutualAid

I know the bias against me is much less than Black patients.I am just saying I understand WHY and that this is common. I wish more doctors...

I know the bias against me is much less than Black patients.

I am just saying I understand WHY and that this is common.

I wish more doctors in my line of sight could read this. I never found Dr Mastadon lol

Black Patients Dress Up and Modify Speech to Reduce Bias, California Survey...

Black Patients Dress Up and Modify Speech to Reduce Bias, California Survey Shows

https://californiahealthline.org/news/article/black-patients-medical-bias-california-research/

I am not Black but I have been friends w/a few chronically ill Black ladies, and I learned this from them.

As a person from a poorer family, not the best education, and indeed minimal experience with doctors/healthcare, I hope they will respect me more if I look employed and functional.

But sometimes you may look "not sick" or too functional - it's a gamble. All Drs have biases

Close to 20,000 people are currently in the hospital with COVID-19Unbelievably 2400 people died last week.The odds of getting out of the...

Close to 20,000 people are currently in the hospital with COVID-19

Unbelievably 2400 people died last week.

The odds of getting out of the hospital alive when you have COVID sounds a bit scary.

Sure, a few people die before they make it to a hospital, or after they are discharged. But most of them die at hospitals.

#CovidIsNotOver #COVID19

I hurt myself doing almost nothing so much of the time. I woke up because I pinched my shoulder oddly last night. I hurt my "bad...

I hurt myself doing almost nothing so much of the time.

I woke up because I pinched my shoulder oddly last night. I hurt my "bad hand" pulling up my pants yesterday and now have my finger in a brace.

My health is ridiculously complicated.

Online doctor appointment and another doctor ordered me a knee X-ray.

We've spent a lot of money on copays already this year. All I see in the future is more copays

Well, my "new rheumatologist" just gave me an online appt tomorrow for me to discuss my worries. So I guess that's good but...

Well, my "new rheumatologist" just gave me an online appt tomorrow for me to discuss my worries. So I guess that's good but also all these appts are getting costly. #chronicillness

more medical stuffSince then, I have been on top of my health as best I can and I have been diagnosed with:-brain cyst in Meckel's...

more medical stuff

Since then, I have been on top of my health as best I can and I have been diagnosed with:

-brain cyst in Meckel's cave
-trigeminal neuralgia
-occipital neuralgia
-colon polyps
-Shatzki ring
-lichen sclerosis
-hypothyroidism/Hashimotos
-carpal tunnel
-trigger finger
-frozen shoulder (fixed but still in pain 5 years later)
-adenomyosis
-endometriosis
-polycemia (secondary but to what is unknown)
-TMJ

I think that's all, but as you see, it's a lot of physical burdens. Ick.

more medical stuffI feel embarrassed about my medical anxiety. I would say I've had it my whole life, but part of the reason I have it...

more medical stuff

I feel embarrassed about my medical anxiety. I would say I've had it my whole life, but part of the reason I have it is that my parents avoided doctors like the plague when I was a kid.

My mother forged my vaccine card one year bc I had a reaction that may have been Gillian Barre but only lasted a few days.

I didn't any vaccines again until I my early 30's and there was a measles outbreak in Virginia that made me paranoid.

Anyway, I am frustrated and I don't have any answers. I know so so many of us with chronic illness go through a large battery of doctors...

Anyway, I am frustrated and I don't have any answers. I know so so many of us with chronic illness go through a large battery of doctors until they get it right with the diagnosis.

The average time to a disease diagnosis in rheumatology is something like 5-7 years.

I am really scared that if I start over with this doctor, I'm back to square 1.

Yes, I am hypermobile. BUT I also have a lot of other rare diseases and I believe they are rheum-related and methotrexatre helped

#NEISvoid

It wasn't quite as noticeable until I started using compression wear and braces. Now, it's very noticeable, it's about the width...

It wasn't quite as noticeable until I started using compression wear and braces. Now, it's very noticeable, it's about the width of my finger

and I 100% know it wasn't there last year because I had a knee doctor look at my knees.

So I feel scared. I can't live with my hands cramping/getting stuck. I don't want to stay on methotrexate, but if I DO have an autoimmune thing that's undiagnosed this could be the only thing keeping it under control.

Ugh

#NEISvoid

Things with my health seemed to be doing better then just like that, they're not.I saw a rheumotologist for a second opinion and he...

Things with my health seemed to be doing better then just like that, they're not.

I saw a rheumotologist for a second opinion and he wants to take me off the methotrexate. I really, really want this to be a good choice.

But it's been two weeks of titrating down a dose each week, and suddenly my fingers are stiffer.

Also, unrelated, I have a small bony growth under my knee. It's about two inches under the right knee, which also looks kind of misshapen after I go out to exercise.

#NEISvoid

She wants to sell it to us.It sounds a lot like this self-help-leadership-seminar-cult that a rich lady dragged me to in the early 2000s. I...

She wants to sell it to us.

It sounds a lot like this self-help-leadership-seminar-cult that a rich lady dragged me to in the early 2000s.

I can spot cult woo from a mile away. I promise I will tell you to run when I see it

One of the Koch brothers' kids was in the NYT (ugh, I hate them but that's another rant for another day). She was really messed up...

One of the Koch brothers' kids was in the NYT (ugh, I hate them but that's another rant for another day).

She was really messed up as a kid due to her family's notoriety, went through psych ward after psych ward, developed OCD and an eating disorder. She swears THAT part is not her family's fault. It was never their evil that messed her up, it was HER not accepting her lot in life as a billionaire's kid.

Luckily, now she's invented a Scientology-esque woo program that can help more like her 😂