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Potscast E166: POTS Diary w/Lauren - Coggle Diagram
Potscast E166: POTS Diary w/Lauren
Did you have a life before POTS
Developed from Long COVID in 2020
Experiencing long covid and then a little pots then in early 2023 got really bad so dug into research
March was officially diagnosed "felt like a weight off my shoulders"
Snapshot of life before long term COVID
Played college tennis at UWisconsin Lacrosse
going out with friends
typical college experience and had a job
hard worker
covid hit and then had a lot of symptoms
Symptoms/other things with long covid
very first symptoms was extreme joint pain in knees, very "weird and new"
was a tennis player so was used to being active and always on her feet so it was new to her and painful, had to cut down hours on job and make life adjustments
chronic fatigue
headaches
anxiety about the symptoms because no one was able to find anything wrong with her
US.PC.P1.08:
Patients need a way to acces mental health support that addresses the anxiety and stress related to chronic illness
when things went downhill, headaches, has never passed out, presyncope feeling, nausea, heart pains, muscle spasms, more symptoms as she has had diagnosis longer
what was covid like
went only to get a covid test only because was going to see her family and was surprised when she was positive
she was feeling a little bit off but was attributing it to not getting enough sleep or a weird couple days where she just needed to get back into gear
she quarantined and did physical activity while quarantined
at the end of the quarantine, felt fatigued and and could not get out of bed, but standard covid case and started feeling better
a few months later started feeling more symptoms and that's when the journey began
Long Covid
talked to her mom about it and did a lot of research on google
could not figure out what was wrong with joint pain
did lots of scans and tests, could never find anything wrong
didnt get diagnosed with long void until 2023, providers didnt believe she had it
US.PC.P1.02:
Patients need more efficient diagnosis, especially for conditions like POTS and long COVID to reduce emotional and physical strain of prolonged uncertainty.
has done lots of research about long covid and pots, but gets uneasy about everything
US.PC.P1.04:
Patients need easily understandable resources and guidance for managing their symptoms
has looked at reliable sources and the youtube community
hearing the stories has really helped her have hope in her journey
started acupuncture, leaves feeling worst but better? balance out energy
meditating a lot, restoring center
focused a lot on diet, more whole foods based and less processed foods, trying to restore gut health
pacing symptoms, mental, spiritual, and physical health
Life Now
had to stop playing tennis, couldnt perform at level she wanted to perform at, not the best of times
US.PC.P1.05:
Patients need a way to modify exercise that align with their fluctuating health status
in between jobs
US.PC.P1.07:
Patients need a way for employers to accommodate fluctuating health conditions, that allow them to keep working without compromising health
left full time job for a number of reasons
health is unstable, future is uncertain, find balance
US.PC.P1.03:
Patients need better treatment strategies that balance medical, emotional, and physical aspects, recognizing each patient's unique journey and progress
trying to stay postive, not where she wants to be at in her life, knows there will be another side, not giving up hope "you have to believe you will get better"
connected with people on facebook and friends in the pots community
US.PC.P1.06:
Patients need a way to connect with others who have similar conditions, allowing for shared experiences and reducing feelings of isolation
had a friend in college who had been living with pots for a lot of her life
best support
do journey in own terms
don't let people talk about you in terms of your diagnosis
life is bigger than this
when to talk about it
dont want to talk about it too much but also dont want people to forget about it, let people talk but not brought up everytime
US.PC.P1.01:
Patients need better emotional support where they can discuss their experiences without being solely defined by their diagnosis
activities done now
she hopes to get back into tennis because health will get better
pilates to build strength
likes to read and hand sew
pots silver lining
believe its her super strength and not her achilles heel
see the beauty in small things
value friendship and family
has become more empathetic and understanding
advocate for yourself
rock bottom moment
wasnt one moment it was a culmination
hadnt been diagnosed, frustrated with job, health, living situation, broke down crying and knew had to make some changes
people listening to the podcast like to know it's nto great and everyone goes through bad things and they survived
what would give hope
tell yourself it gets better, take a deep breath, theres a whole community and world, might have to pause life but it's nto forever, connect wiht people in so many ways
speed round
Favorite way to get salt: course sea salt
Drink most hydrating: water
Fav time of day and why: late morning to mida afternoon because body is more regulated
Fav place to spend time: anywhere outside maybe around water
How many doctors for pots: less than 5
How many for ling covid: feels like 30
How many pots patients have you met face to face: 1
One word living with a chronic illness: rollercoaster
Good adice to keep in mind: it will get better
Something small or inexpensive brings joy or comfort: homecooked meal, really tasty
Someone you admire: dr. gilmore old prof, inspired her and showed her world is full of possibilities
Something proud of: staying positive
Toughest thing about pots: feeling that you know your blood is not regualting itslef, frustraitng
Tricks to fall asleep: routine
Tricks for energy: no
Gift to every pots patients: any electrolyte drink of their choosing
Grateful: simple joys of life
I love it when..i can lay outside and read a good book
I hate it when..run out of ingredient thought they had for a recipe
People might suspect im a potise when..i asked wehre their slat is
The weirdest place i had to sit down is..the bathroom of concert
What do you wish more people knwo: not broken just diregulated, invisible illness
Say to pots patient: stronger than you know, resiliant than you think you are