Got my diagnosis of EDS N POTS😢at 42 after having it since the age of 5. I was told your a hypochondriac and an attention seeker , tho so far from the truth they had to be right bc they are the professionals...... Right???? So many of us have been failed so thank you for giving us armour against this monster. I want to hug and thank you so much. I'm in north Carolina but am from Appalachia. But anywho thank you and just know I'll return the favor.
Thank you so much for being such a strong and vocal advocate for those with dysautonomia conditions!! While I don't have to deal with POTS, my condition is a close cousin and still try to manage daily low BP symptoms. Please let me know how I can help!!
Nov 28th 2019 was my last good day. I thought i was dying. 278 test and nothing. a perfectly healthy 28 year old male with an invisible illness no one saw and would assume it was all just anxiety. i lost 70lbs in 2 months. i finally went to google to self diagnose...all i typed in was fast heart when standing....and voila! POTs. How could so many doctors, specialists, CARDIOLOGISTS, miss such an elephant in the room. one test and confirmed. i cried. i cried hard. finally an answer...or so i thought. an answer shrouded in ignorance and disbelief. friends and family gaslighting you. no one understanding that im not pretending to be sick...im pretending to be ok! 4 years later im still sick, no doctor to help, no job i can work, no life, always in constant agony. i only live in my dreams and ironically wake up to the nightmare. a prisoner stuck in a broken body. surrounded by people who dont even think its real and or a big issue. thank you for advocating and spreading awareness! hopefully one day it will prevent those of us from suffering in the dark.
Hi Bobby, I'm sorry to hear that you have been having to live this way. I understand because I thought for a second that I wrote this - that is how identical our stories sound. Am 29. It has been 8 years in my journey. I also have Lyme and co-infections, etc. and I don't know where the light at the end of the tunnel is. I mean, I do, but that is not what I 'd like to try again. I think that means that I, and you, hopefully will want to keep fighting. Then, do so. Because then maybe, all of this will have a funny reason in the end, once it is truly unveiled to us...For now, I wish you some sort of comfort for you. And for what it's worth: I love you.
I feel for you and I can relate to your situation more than I can express; I've been living with POTS for 43 years. You are not alone so please don't give up looking for the cause, a solution or a way to manage the symptoms, the comorbidities and the life-altering changes. ❤
Keep fighting, it means so much to have someone like you representing our loved ones that deal with this every day.
Got my diagnosis of EDS N POTS😢at 42 after having it since the age of 5. I was told your a hypochondriac and an attention seeker , tho so far from the truth they had to be right bc they are the professionals...... Right???? So many of us have been failed so thank you for giving us armour against this monster. I want to hug and thank you so much. I'm in north Carolina but am from Appalachia. But anywho thank you and just know I'll return the favor.
Thank you so much for being such a strong and vocal advocate for those with dysautonomia conditions!! While I don't have to deal with POTS, my condition is a close cousin and still try to manage daily low BP symptoms. Please let me know how I can help!!
❤❤❤
Nov 28th 2019 was my last good day. I thought i was dying. 278 test and nothing. a perfectly healthy 28 year old male with an invisible illness no one saw and would assume it was all just anxiety. i lost 70lbs in 2 months. i finally went to google to self diagnose...all i typed in was fast heart when standing....and voila! POTs. How could so many doctors, specialists, CARDIOLOGISTS, miss such an elephant in the room. one test and confirmed. i cried. i cried hard. finally an answer...or so i thought. an answer shrouded in ignorance and disbelief. friends and family gaslighting you. no one understanding that im not pretending to be sick...im pretending to be ok! 4 years later im still sick, no doctor to help, no job i can work, no life, always in constant agony. i only live in my dreams and ironically wake up to the nightmare. a prisoner stuck in a broken body. surrounded by people who dont even think its real and or a big issue. thank you for advocating and spreading awareness! hopefully one day it will prevent those of us from suffering in the dark.
Hi Bobby, I'm sorry to hear that you have been having to live this way. I understand because I thought for a second that I wrote this - that is how identical our stories sound. Am 29. It has been 8 years in my journey. I also have Lyme and co-infections, etc. and I don't know where the light at the end of the tunnel is. I mean, I do, but that is not what I 'd like to try again. I think that means that I, and you, hopefully will want to keep fighting. Then, do so. Because then maybe, all of this will have a funny reason in the end, once it is truly unveiled to us...For now, I wish you some sort of comfort for you. And for what it's worth: I love you.
I feel for you and I can relate to your situation more than I can express; I've been living with POTS for 43 years. You are not alone so please don't give up looking for the cause, a solution or a way to manage the symptoms, the comorbidities and the life-altering changes. ❤
@@michele0324what’s your symptoms