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halcionandon , to disability
@halcionandon@aus.social avatar

Please

Finally got dr permission for IV magnesium. I don’t absorb it any other way so I am extremely deficient in it and ill. Can provide materials.

Problem is that I can’t find anyone to come out here in suburbia for less than $600 (check cost of wellness clinics in Melbourne. Expensive or don’t do at all. )

If you are a or have any experience running a drip, please reply/DM. I don’t care if you learned it DIY as long as you know what you’re doing.

This treatment changes my life from bedridden to 60% of normal in a few months! That’s mildly ill in comparison.
It helps every symptom I have.
Hospitals only give it for preeclampsia. Hospital in the Home is the same. Private nurse services same.
It’s so basically going through proper channels doesn’t help.

It’s not illegal to have someone qualified come out and do it as long as doc has signed off on it which is why wellness clinics can do it. But medical system won’t. I know it doesn’t make sense but it’s Australia 2024. If you don’t have formal qualifications we can figure it out.

I’ve even asked the government for help. Nothing.

Was informed even private insurance wouldn’t help with this (I don’t have it ofc but this is an example of how hard and stupid this is.)

P-l-e-a-s-e post to other platforms. I have no team to help promote me I barely have any energy for basics . I have no energy to advertise. If you can help an team also let me know.

Please give me some quality of life.

I’m in .
If you’re willing to drive a distance will compensate for petrol and pay what you think is fair for your time.

TLDR: Need nurse or any qualified healthcare worker to come to my place to give magnesium IV.
Even consider unqualified if you know what you’re doing.

@longcovid @mecfs @dysclinic
@chronicillness
@chronicpain
@migraine
@disabilityjustice
@disability
@DisabilityJustice
@disability
@socialwork
@socialworkers
@communitycare @mutualaid

Help me get out of bed, gain health, get far away from my abusers.

This is me:

ImmedicableME , to disability
@ImmedicableME@mastodon.online avatar

Looking for recommendations for U.S. providers who specialize in nonepileptic or .

Mine are not psychogenic. Most likely related to hyperadrenergic and/or .

Please boost. Thank you. @mecfs @dysautonomia @disability

janetlogan , to actuallyautistic
@janetlogan@mas.to avatar

Between going out in the cold after only 2 hours of sleep, and the stress of my worrying about the test, my is flaring big time. I'm going to go relax in bed, and try to recover. 💤

I handled the peopling fairly well. The Lyft driver over there this morning was cute, with great mom energy. Of course, she was the age of my own kids. 🤷‍♀️ But she helped me to relax a bit. 💜

@spoonies @actuallyautistic

janetlogan OP ,
@janetlogan@mas.to avatar

I got the results of the CT. No immediate actions required, just keep taking the Lipitor, and get re-scanned every 2 - 4 years.

That's one down. Now on to the arrhythmia and dealing with it. That's the middle of next month. Couple of tests, and a special specialist (electrophysiologist) to visit.

@spoonies @actuallyautistic

Email2TootBot , to psychology
@Email2TootBot@mastodon.clinicians-exchange.org avatar

Email2Toot Robot. Please see entry below for author.
.
TITLE: POTS Research Update from Dysautonomia International

POTS research update. POTS is sometimes caused by Long COVID.

-------- Forwarded Message --------

Together We Can Advance POTS
Research ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌
‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌

/Having trouble viewing this email? View it in your web browser
<https://dysautonomiainternational.salsalabs.org/potsresearch?wvpId=7305cb48-0701-4823-a500-9b3645ee69c8>/

Since 2013, Dysautonomia International has funded millions of dollars in
cutting-edge research on postural orthostatic tachycardia syndrome
(POTS), more than any other non-governmental organization.

We invite you to watch our recent webinar highlighting the latest *POTS
research updates
<https://default.salsalabs.org/Teb41966c-2af1-45ce-8e9b-ea4c3dbe94d9/7305cb48-0701-4823-a500-9b3645ee69c8>*from
"The Big POTS Survey" developed by Dysautonomia International,
Vanderbilt University, and University of Calgary. This is the largest
POTS study ever done, with over 10,000 participants from 15 different
countries enrolled to date. This study has provided new insights into
the many symptoms of POTS, which had not been previously studied, and
new information on the role of autoimmunity, Ehlers-Danlos syndrome,
sex, and other biological factors in POTS.

This study, and all of the other research Dysautonomia International has
funded, is made possible by the generous donations of our community
members. With your support, Dysautonomia International can kick off 2024
with even more ground-breaking POTS research aimed at finding more
effective treatments, and eventually, a cure.

All donations made during our Holiday Giving Campaign, until December
31st, will be matched up to $10,000, thanks to an anonymous "Secret
Santa" donor. This is a great opportunity to double the impact of your
contribution. Thank you to everyone who has already contributed!

How to Support POTS Research

1. If you have been diagnosed with POTS by a physician, take the Big
POTS Survey
<https://default.salsalabs.org/T19bd6478-0bcd-4406-a984-e49d08c7c092/7305cb48-0701-4823-a500-9b3645ee69c8>

if you haven't already done so. This survey is open to people with POTS
in any country and of any age. If you are under age 18, please have a
parent or guardian take the survey with you.

2. Donate to Dysautonomia International's POTS Research Fund at
CurePOTS.org
<https://default.salsalabs.org/T514cdbfa-6408-4071-91a0-229a2376da5d/7305cb48-0701-4823-a500-9b3645ee69c8>.
If you prefer to donate by credit card over the phone or have questions
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<https://default.salsalabs.org/T3c2e540c-e032-42a0-b44e-b3830ae6278e/7305cb48-0701-4823-a500-9b3645ee69c8>
benefiting
Dysautonomia International and invite your friends and family to
contribute.

*4. *Donate by check. Please make checks payable to Dysautonomia
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Dysautonomia International is a 501(c)(3) non-profit. All donors will
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contributions to the Dysautonomia Research Fund
<https://default.salsalabs.org/T1103b338-43af-4e72-b02b-757932978838/7305cb48-0701-4823-a500-9b3645ee69c8>
,
which funds innovative research on orthostatic intolerance,
neurocardiogenic syncope, autoimmune autonomic ganglionopathy, and other
types of dysautonomia, or the Long COVID Research Fund
<https://default.salsalabs.org/T8ef62a7f-6639-4ebe-8fe3-33610c6c48f1/7305cb48-0701-4823-a500-9b3645ee69c8>
,
which funds Long COVID dysautonomia related research.

Thank you for helping Dysautonomia International advance research this
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It's primitive... but it works... mostly...
theautisticcoach , to actuallyautistic
@theautisticcoach@neurodifferent.me avatar

Do my comrades who have find themselves vomiting often? Especially when standing up and sitting rapidly.

@actuallyautistic

theautisticcoach , to actuallyautistic
@theautisticcoach@neurodifferent.me avatar

POTS is a very common condition that many comrades live with.

It’s yet another element to our disability.

What’s your experience?

@actuallyautistic

hosford42 , to actuallyautistic
@hosford42@techhub.social avatar

I'm . The sound of the train blowing its horn as it passes my house makes me cover my ears in pain. But the throbbing bass of the engine that causes a deep pressure in my chest from the vibration makes me feel happy.

When I was a kid, I used to crank up the bass of my parents' stereo and sit directly against the woofer to feel that pressure. They would always yell at me to turn it down. I've always loved that feeling.


@actuallyautistic
@neurodiversity

deirdresm ,
@deirdresm@hachyderm.io avatar

@Tooden @hosford42 @actuallyautistic @neurodiversity with (another aspect of neurodiversity). Could never match my heart rate because it’s all over the place, so became a bass player.

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