Salty Beach (she/her)

Never forget that Hope is not a frail thing.

Hope is the refusal to accept our current reality as the only one we will ever know.

Never give up on Hope.

I thought emotions worsened my symptoms—turns out, it’s the opposite.

Your anger, frustration, & exhaustion are valid & objective: 85% of #POTS patients are misdiagnosed with anxiety.

#POTSie #Dysautonomia #LongCovid #CFS #CFSME #ChronicIllness #Chronicillnesswarrior #Spoonie #spoons #MCAS #lcs

Dnd campaigns?

The third who exercises in bed?? ☺️

More news outlets need to be covering this moral and legal travesty.

#OPM #Federallockout #coup
#MUSK #ELON #TRUMP #Doge
#AccountabilityNow #Resist

BREAKING: David Hogg, a survivor of the Stoneman Douglas High School shooting just been elected Vice Chair of the DNC.

CONGRATS!

🚨 URGENT: Treasury Secretary Bessent has reportedly granted full access to the federal payment system to DOGE.

This is a blatant violation of legal/ethical standards!

SPREAD THE #News

#MUSK #ELON #TRUMP #Doge
#GovernmentCorruption #AccountabilityNow #FederalFraud #ProtectTaxpayers #Resist #nyt

Exclusive: Musk aides lock government workers out of computer systems at US agency, sources say Aides to Elon Musk charged with running the U.S. government human resources agency have locked career civil servants out of computer systems that contain the personal data of millions of federal employees, according to two agency officials.

www.reuters.com/world/us/mus...

Wyden Demands Answers Following Report of Musk Personnel Seeking Access to Highly Sensitive U.S. Treasury Payments System | The United States Senate Committee on Finance Wyden Demands Answers Following Report of Musk Personnel Seeking Access to Highly Sensitive U.S. Treasury Payments System

www.finance.senate.gov/chairmans-ne...

Alt National Park is reporting gross violations on behalf of Elon Musk and his employees at OPM, GSA & the Treasury Dept.

#elon #elonmusk #criminal #resistance #republicans #fascist #trump #altnps #altnationalparks

The trouble with optimism is that it can be toxic positivity in disguise.

There’s a fine line between them that can be as invisible as our disability.

Be gentle to yourself.

#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #toxic #chronicillness #disability #disabled

Toxic productivity is toxic.

Exhaustion is exhausting.

You do what you can when you can and, despite the nagging voice in your head, you are doing your best.

#POTS #POTSie #Dysautonomia #LongCovid #CFS #CFSME #ChronicIllness #Chronicillnesswarrior #Spoonie #spoons #MCAS #lcs

But that lack of belief is infuriating.

Why would I lie about this? What joy could be gained from faking this disability?

I loved my life. Why would I hide from it?

The truth is it’s always more revealing about the person disbelieving than about you or I.

Movement (gentle/supine) helped my CFS/PEM.
More so, it helps shut people up when they tell me I’ll feel better if I exercise.

I say: I endurance/strength train 3 hrs/day, drink 160oz/day and eat healthy but I’m still sick and there are times I’m bedridden for days.

It helps but it’s not a cure.

Never forget:

we are not defined by who we are when we get what we want but who we are when things fall apart.

We are created when we put the pieces of ourselves back together.

#POTS #POTSie #Dysautonomia #LongCovid #CFS #CFSME #ChronicIllness #Chronicillnesswarrior #Spoonie #spoons #MCAS #lcs

Go ahead and wallow in the bitterness.

Steep in the despair, the grief, the pure injustice of living with a chronic illness.

Rage until your flame dims. Then get up, brush yourself off, and try again.

#POTS #POTSie #Dysautonomia #LongCovid #CFS #ME #ChronicIllness #Chronicillnesswarrior #Spoonie

Devastating for scientists and their research, and everyone who benefits from that research.

I’m not sure if everyone outside academia is aware that a delay or “pause” in grant funding often means the researchers themselves are lost from the field, along with their expertise.

You don’t have to be strong, just too stubborn to quit.

Some days, it’s not about thriving - it’s about not giving up.

You don’t need to be powerful - just persistent.

#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #cfs #me #LCS #chronicillnesswarrior #SpoonTheory

Taking a Shot at POTS In the U.S., there are few physicians and clinicians who treat postural tachycardia syndrome, also known as POTS. Johns Hopkins’ program is unique in including a rheumatologist on its comprehensive te...

1/2/25, Johns Hopkins: 'Taking a Shot at POTS'

'In the U.S., there are few physicians and clinicians who treat POTS..'

'Madeline Brown..I’m a doctor..there was something wrong with me. I went from being completely healthy to basically being bedridden..'

www.hopkinsmedicine.org/news/article...

Dear feet and legs,

Give me back my blood supply.

Sincerely,
Brain

#POTS #hypovolemia #DisabledinSTEM

reminder: doom scrolling today won't fix the world, but it will ruin your day. log off, drink water, and be gentle with yourself.

Until I turn on the news

Never forget that Hope is not a frail thing.

Hope is the refusal to accept our current reality as the only one we will ever know.

Never give up on Hope.

#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #cfs #me #LCS #chronicillnesswarrior #SpoonTheory

Study: electricity heals wounds!

Me, living with POTS:
(inserts fork into wall socket)

#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #POTLife #LCS #CFS #funny #meme

Your Arm Position Can Make Blood Pressure Readings Inaccurate Blood pressure categories are based on patients who are sitting in a certain position. But not every doctor’s office takes readings that way.

If your arm is hanging at your side, or your hand is sitting in your lap when you get your blood pressure checked, the reading might be off.

Tips 4 POTSies

Compression wear can reduce blood pooling. Start with 20-30 mmHg compression for a few hours a day.

Best areas to compress:
Stomach > leg > calf

Some insurance plans may cover part of the cost!

#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #Tips4POTS

Tips 4 POTSies:

Plain salt water = laxative!

~> Add sugar to your oral hydration solutions to help the sodium and water be absorbed.
*sugar substitutes are not absorbed and don’t help
*carbs in food act similarly

#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #Tips4POTS

Follow me for the rest of my tips!

#POTS #Dysautonomia #ChronicIllness #POTSies #SpoonieTips #ChronicFatigue #InvisibleIllness #HealthTips #SpoonieSupport #PosturalOrthostaticTachycardiaSyndrome #HealthAdvocacy #ChronicPain #LivingWithPOTS #SpoonieCommunity #POTSTips #HealthJourney #ChronicLife

d. Sugar helps sodium get absorbed by our bodies - without it, salt water is just a laxative - but every person might have a different minimum amount of sugar their body needs to absorb sodium.

The WHO Oral Hydration Solution recipe uses 2 tbsp of sugar.