Salty Beach (she/her)
@zierrazunset.bsky.social
Living life with POTS, dysautonomia, Long Covid, MCAS, and CFS/ME symptoms as best I can, guided by research, medication and exercise techniques adapted for chronic illness warriors whose biggest battle is against gravity.
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
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
February 10, 2025 at 4:23 PM
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
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
More news outlets need to be covering this moral and legal travesty.
#OPM #Federallockout #coup
#MUSK #ELON #TRUMP #Doge
#AccountabilityNow #Resist
#OPM #Federallockout #coup
#MUSK #ELON #TRUMP #Doge
#AccountabilityNow #Resist
February 2, 2025 at 5:34 PM
More news outlets need to be covering this moral and legal travesty.
#OPM #Federallockout #coup
#MUSK #ELON #TRUMP #Doge
#AccountabilityNow #Resist
#OPM #Federallockout #coup
#MUSK #ELON #TRUMP #Doge
#AccountabilityNow #Resist
Reposted by Salty Beach (she/her)
BREAKING: David Hogg, a survivor of the Stoneman Douglas High School shooting just been elected Vice Chair of the DNC.
CONGRATS!
CONGRATS!
February 2, 2025 at 3:10 PM
BREAKING: David Hogg, a survivor of the Stoneman Douglas High School shooting just been elected Vice Chair of the DNC.
CONGRATS!
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
This is a blatant violation of legal/ethical standards!
SPREAD THE #News
#MUSK #ELON #TRUMP #Doge
#GovernmentCorruption #AccountabilityNow #FederalFraud #ProtectTaxpayers #Resist #nyt
February 1, 2025 at 9:19 PM
🚨 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
This is a blatant violation of legal/ethical standards!
SPREAD THE #News
#MUSK #ELON #TRUMP #Doge
#GovernmentCorruption #AccountabilityNow #FederalFraud #ProtectTaxpayers #Resist #nyt
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
#elon #elonmusk #criminal #resistance #republicans #fascist #trump #altnps #altnationalparks
February 1, 2025 at 1:34 AM
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
#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
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
January 30, 2025 at 10:31 PM
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
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
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
January 30, 2025 at 6:02 AM
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
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
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
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
January 23, 2025 at 1:11 AM
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
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
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
January 23, 2025 at 1:09 AM
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
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
Reposted by Salty Beach (she/her)
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.
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.
NIH appears to have canceled/postponed all of its study sections—the independent review panels that approve federal grants for health research.
Such grants fund the work/salaries of 300k people at more than 2,500 institutions
Such grants fund the work/salaries of 300k people at more than 2,500 institutions
All NIH study sections canceled indefinitely. This will halt science and devastate research budgets in universities.
January 22, 2025 at 11:24 PM
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.
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
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
January 22, 2025 at 4:24 AM
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
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
Reposted by Salty Beach (she/her)
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...
'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...
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...
www.hopkinsmedicine.org
January 19, 2025 at 6:04 PM
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...
'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...
Reposted by Salty Beach (she/her)
January 16, 2025 at 11:55 PM
Reposted by Salty Beach (she/her)
reminder: doom scrolling today won't fix the world, but it will ruin your day. log off, drink water, and be gentle with yourself.
January 20, 2025 at 3:14 PM
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
January 21, 2025 at 5:58 AM
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
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
January 20, 2025 at 6:38 PM
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
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
Me, living with POTS:
(inserts fork into wall socket)
#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #POTLife #LCS #CFS #funny #meme
January 20, 2025 at 5:11 AM
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
Me, living with POTS:
(inserts fork into wall socket)
#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons #POTLife #LCS #CFS #funny #meme
Reposted by Salty Beach (she/her)
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.
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.
buff.ly
January 20, 2025 at 1:03 AM
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
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
January 20, 2025 at 12:02 AM
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
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
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
January 19, 2025 at 11:54 PM
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
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
An Exhausting but NonExhaustive List of 22 Tips for POTS
1. Forgive your body - it is going through a lot right now and doing everything it can. When in doubt, give it grace.
2. Choose when to rest or your body will for you.
#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons
1. Forgive your body - it is going through a lot right now and doing everything it can. When in doubt, give it grace.
2. Choose when to rest or your body will for you.
#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons
January 19, 2025 at 6:35 AM
An Exhausting but NonExhaustive List of 22 Tips for POTS
1. Forgive your body - it is going through a lot right now and doing everything it can. When in doubt, give it grace.
2. Choose when to rest or your body will for you.
#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons
1. Forgive your body - it is going through a lot right now and doing everything it can. When in doubt, give it grace.
2. Choose when to rest or your body will for you.
#POTS #dysautonomia #longcovid #spoonie #chronicillness #POTSie #Spoons