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Standing Up to POTS

@standinguptopots

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Founded in 2014, Standing Up to POTS works to improve quality of life for people with POTS through research, advocacy, and support. #POTS #spoonie

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Thanks to our friend Kaira for sharing her #POTS journey to raise awareness!

First symptom: Syncope

Worst symptom: Vertigo.

Hardest thing about living with POTS: Learning how to change my daily routines, finding
new ways to do things without causing flare ups.

Favorite way to consume salt: As a garnish on top of tomatoes!

You might suspect I'm a POTSie when...I'm constantly trying to find places to sit down in
every room.

Biggest life change made because of POTS: I used to be able to do more being a performer
and since my diagnoses my activity level has had to be modified a lot. I've had to learn
how to take things slower in my life and that's been difficult to accept overtime.

Best coping strategy: Allowing myself to have off days where I can fully take care of my
symptoms. It helps me reset better.

I want to help raise awareness because... I don't think there isn't enough media coverage
or research still about POTS and many PCPs don't have awareness of this condition still. I
want to use my voice to help others feel less alone and use my platforms to help other
patients that may be having a difficult time navigating their symptoms, and struggling to
find a diagnosis.

I wish more people knew that POTS...Can be life changing, and life altering.

POTS has taught me that...I am not less because of my diagnosis, and it's okay to do things
differently to manage my symptoms.

#spotlightsunday #dysautonomia #awareness #chronicillness by @standinguptopots

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6 days ago

Time is running out! Don’t miss your chance to join our Annual #SUTP5K (in-person or virtual) and support life-changing #POTS research. Every step helps improve lives. Register by Oct 14th! 💙 https://www.standinguptopots.org/annual-5k by @standinguptopots

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6 days ago

Hey, just a gentle reminder: taking care of yourself, managing your symptoms, counts as being productive. Give yourself some credit. How did you take care of yourself today? #potsawareness #pots #spooniecommunity #motivationalmonday #chronicillness #selfcare by @standinguptopots

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7 days ago

Thanks to our friend Belle for sharing her #POTS journey to raise #awareness!

First symptom: GI issues and fainting

Worst symptom: Fatigue and pain

Hardest thing about living with POTS: Getting other people to understand how
encompassing it is.

Favorite way to consume salt: Salt on watermelon!

You might suspect I'm a POTSie when... I'm hiding in the only spot of shade on a hot
summer day.

Biggest life change made because of POTS: Being patient with myself and others.

Best coping strategy: Cuddling my cat!

I want to help raise awareness because... I’ve been living with POTS for over ten years now. I am in a stage of life where I can function, but it doesn't mean I am not affected daily by symptoms.

I wish more people knew that POTS...It’s not just fainting.

POTS has taught me that... I am stronger than I think.

#spotlightsunday #dysautonomia #potsawareness #symptoms #fainting #chronicillness by @standinguptopots

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8 days ago

Time is running out! Don’t miss your chance to join our Annual #SUTP5K (in-person or virtual) and support life-changing #POTS research. Every step helps improve lives. Register by Oct 14th! 💙 https://www.standinguptopots.org/annual-5k by @standinguptopots

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9 days ago

We’re so grateful to Matt Buehrer and Thrivent for once again stepping up as Presenting Sponsor of our #SUTP5K! Their ongoing support helps us uplift and empower the #POTS community. Thank you for making a difference! 💙 https://connect.thrivent.com/matt-buehrer by @standinguptopots

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11 days ago

In this episode, Madeline shares her experience of living with POTS, from diagnosis to the daily routines that helped her improve over time. She talks about how exhausting it can be to live with a condition that often feels like a full-time job, and how creating simple systems made her POTS more manageable. That experience led her to build POTSie, a mobile app created to help others reduce the mental load of living with POTS and make daily life a little easier. ThePOTScast.org by @standinguptopots

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13 days ago

Sending extra love to anyone whose basic daily tasks feel insurmountable today. No one else gets to judge the size of your victories. What was a difficult task you accomplished today?

#motivationalmonday #pots #dysautonomia #smallvictories by @standinguptopots

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14 days ago

Thanks to our friend Ella for sharing her #POTS journey to raise awareness!

First symptom: Fatigue, I was/am always tired after doing small tasks and would wake
up feeling like I barely slept even if I got 8 hours of sleep.

Worst symptom: Heart palpitations or fatigue.

Hardest thing about living with POTS: I’m a very active person and like to be busy but with POTS I often over do it which leaves me in a flare up for days.

Favorite way to consume salt: Salty Hydration drinks

You might suspect I'm a POTSie when... I stand up and grab something right away or put my head in my hands.

Biggest life change made because of POTS: Making sure I always have access to my POTS bag which has electrolytes, salt tablets and a fan.

Best coping strategy: AC, keeping a water bottle with me at all times, chewable salt tablets.

I wish more people knew that POTS... looks different for everyone and isn’t just you being lazy.

POTS has taught me that...It’s okay to say no and stay home and prioritize your health.

#spotlightsunday #potsawareness #diagnosis #dysautonomia #flare #electrolytes by @standinguptopots

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15 days ago

We’re thrilled to have #BUOY as our Gold Sponsor for the 13th Annual 5K/2K! Their support means a lot to the #POTS community. Proud to partner for our #SUTP5K! 💙 Learn more: https://justaddbuoy.com by @standinguptopots

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16 days ago

We’re thrilled to have #Normalyte as our Presenting Sponsor for the #SUTP5K! Their support truly impacts the #POTS community. Proud to partner for our 13th Annual 5K/2K! 💙 Learn more: https://normalyte.com/ by @standinguptopots

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18 days ago