Living with P.O.T.S

I was diagnosed in July of 2019 after I started having episodes of dizziness when I stood up & feeling like I was gonna faint, I actually thought it was an allergic reaction to a new medicine but after stopping that medicine under advice of my doctor, we saw it wasn't & so began the discovery of my pots diagnosis.

I had the cardiac work up to confirm it & basically the cardiologist told me read this literature about the condition & try to drink more water, increase your salt & if it doesn't get better we'll refer you to the Only specialist in LA for POTS, 🙄 well, 6 weeks later, I asked for the referral. Omg, you won't believe this drama but the specialist wasn't taking new patients so my primary dr tried referring me to 3 other cardiologists who actually Refused to treat me, stating they were Not qualified to treat my condition & I should see the specialist I tried to see first😡

Long story short, it took 2 years to get me to the specialist I originally started with & then I found out he just retired, but his partner took me on, omfg😳!!! What a journey🧐, & I had to go to the ethics board cause my insurance tried to deny me to go to Cedars-Sinai (where the specialist was) because I have facey medical group, but since no cardiologist would see me & they couldn't provide the care I needed they had to pay, so this was quite the drama to get care.

My quality of life has changed so much and it’s so bad I'm on permanent disability & basically have to take a walker that has a seat with me if I go anywhere because I get tired easily & run out of air when standing so I may need to sit suddenly. I can walk 10-15 minutes at a time on a good day before needing to rest, but some days are worse than others & things like heat set off my heartrate too & I can get short of breath right away and need to sit down, so it’s frustrating the way my life has changed.

I hardly go places and spend most days watching TV laying or sitting in bed, I get up often & walk to kitchen or other room in house for activity just to move around but even that is so exhausting most times, 😥 I spend alot of time planning my final end, making sure everything is in order so my kids don’t have to worry about stuff so thats all done, guess it’s wishful thinking, cause I’m so tired of just being a lump of nothing😔.

From a bad ass life saving ER Nurse, saving lives, running things in the ER, controlling the loud mouth psych patients, drunks 🤪lol, rowdy patients, calming little kids, fixing injured people …To this nothing existence of wondering why am I still here when I can hardly function,🤷‍♀️ everything sets off my heartrate & I'm out of breath with very little effort. I guess there's a purpose but I just don't see it, I feel pretty worthless, I try to cheer myself up with dumb things but it’s getting harder, I’m so tired of being tired.

The bottom line is this, there is no cure & the medicine helps my heartrate not go super high when I’m standing but it still goes high & I still get short of breath so basically it’s a case of learn to live with & manage the symptoms the best you can cause there’s nothing else they can do. This is after physical therapy & the cardiac pots specialist has treated me & put me on the heart medicine, which I’m still on 🤷‍♀️. Life changing, career ending suck it up & deal with it condition, POTS! That's my life now & I'm living with it cause I must until I’m free.