May 15, 2025
Hi, my name is Bagota. I'm here because
my daughter has POTS, we also suspect EDS and MCAS#MightyTogether
2 reactions •
1 comment
“So what are your plans for the future “
My old councilor once asked me .
“ Hope I have one “ I responded with a witty chuckle .
He busted up laughing then said “ No really .. what are your plans for the future “.
I had to be honest and tell him I stopped planning for the future long ago .
Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .
Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “
Sorrow filled his eyes as he told me .
“ The things you really really want . You have to plan for .
I want you to do one thing that will go towards your future “
And the thought of that terrified me .
( Yep I am THAT big of a commit-a - phobic )
But here I am 3 years later .
And Today I went to the bank and finally took that advice .
And it felt so good .
Most people in my life viewed this act as something super small
Heck it probably is
But it gave me a bit more hope in the big beautiful “ maybes” the future might bring
And in the season of life I am in . That little step meant everything
I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain
9 reactions •
6 comments
“So what are your plans for the future “
My old councilor once asked me .
“ Hope I have one “ I responded with a witty chuckle .
He busted up laughing then said “ No really .. what are your plans for the future “.
I had to be honest and tell him I stopped planning for the future long ago .
Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .
Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “
Sorrow filled his eyes as he told me .
“ The things you really really want . You have to plan for .
I want you to do one thing that will go towards your future “
And the thought of that terrified me .
( Yep I am THAT big of a commit-a - phobic )
But here I am 3 years later .
And Today I went to the bank and finally took that advice .
And it felt so good .
Most people in my life viewed this act as something super small
Heck it probably is
But it gave me a bit more hope in the big beautiful “ maybes” the future might bring
And in the season of life I am in . That little step meant everything
I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain
9 reactions •
6 comments
Years ago when I was heavily dealing with some of “side effects “ of life threatening chronic illness
My councilor gave me probably the best advice I’ve ever head .
“ Live every day like your waiting for an exciting package from Amazon “
And explained to me that often the joy and excitement we get , is not really from the item itself . But it comes in the waiting , the planning and the prepping for something great to arrive.
( I think I can low key blame my shopping addiction on him 😂😉)
But with the chaos I know is coming
I’ve found myself
Re learning the importance of that statement
Though illness has turned me into a realist .
Most of the time being a realist is vastly overrated.
Sometimes you have to mentally plan that interior design room makeover
( that may take a year or more to actually get done )
Step by step plan the dream garden
( that your probably to sick to actually do )
Dream of moving to sea level ( to help your crap lungs ) to an equestrian community
and start from scratch
( You all live in this economy and have seen the housing market.. you know this is the biggest day dream of them all 😂)
But gotta dream of vacations your going to take , places your going to see , things your going to do .
Even if it’s just for the fact that , dreaming about a brighter tomorrow
Makes getting out of bed today a bit easier .
Sure there is a GIANT chance the things you dream of won’t happen .
But even the most harsh of realist , can’t deny that there is a chance that they might .
I say , believe in the good that’s to come ❤️
#smileon🐷 #ChronicPain #ChronicIllness #raredisease #hope #MightyTogether #pcos #CommonVariableImmuneDeficiency #autommunedisease #MastCellActivationDisorder #MightyTogether
11 reactions •
3 comments
Hi, my name is sophplus5. I'm here because I have EDS, POTS, MCAS, Lyme disease and have been in extreme constant pain for 2 1/2 years. Withdrew from high school because of the pain, nausea and dizziness. Finding support / friends would help the isolation
2 reactions •
1 comment
Hi, my name is Thankfuldaughter3462. I'm here because I am looking for information on EDS/POTS and MCAS. I am also looking for a community to share information and support.
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia
2 reactions •
1 comment
Sometimes we show the picture we paint for the world to see
A trickling laugh
Beaming eyes
And a seemingly permanent smile
Even though you were crying in the docs office 10 minutes prior
Heck, your still embarrassed you cried in the doctors office, Because you promised yourself you would never do that .
But here you are
Sitting on a creaky hospital chair
Waiting to be called back for an Xray
Feeling .. As weak as the skeletal structure that holds a body that feels unfit for the job it was made to do.
But still you ask the awesome lady at the front desk how her day has been
Compliment the lady with the cute shirt next to you.
Still you smile when the radiology tech calls your name , and respond to “ how are you doing “ with
“ I’m alright “
Even when you feel far from it
Hug a friend you see in the hallway
Because life is hard for all of us .
And one of the main things life has taught me is
Sometimes it’s more important to help create joy
Than share your pain #ChronicIllness #RareDisease #AutoimmuneDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #MentalHealth #Migraine #ChronicPain #MixedConnectiveTissueDiseaseMCTD
15 reactions •
7 comments
Hi friends!
I really need some sort of remote job to afford, ya know, general living costs and trying to be a healthy human being. I’ve tried to get reliable remote positions but I can’t find anything other than freelance work.
I have experience with marketing and AI, but I don’t have a ton of experience. If anyone has any recommendations, that would be amazing!!!
#chronicsyncope #MastCellActivationDisorder #EhlersDanlosSyndrome #AutonomicDysfunction #ComplexPosttraumaticStressDisorder #RheumatoidArthritis #BrainInjury
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