u/Strict-Butterfly4958

I never noticed, like REALLY noticed, how eerily similar the imagery of my birth cards, The Devil and The Lovers, was. Especially with the Rider Waite illustrations.

I mean, I know what they mean together in tandem so im not here looking for an interpretation, but it really drives the message home even further. At least for me. Really just two sides of the same coin.

Thanks for the driveby downvotes. I can always count on reddit to act like reddit.​

Today makes 35 days since I've been in the ER because my symptoms had completely overwhelmed me and gotten scary. My last longest streak was 34 days between May 10th and June 14th.

Hope I can keep it up :) yay me!

It's autoimmune, I'm not crazy.

Last night I got my last lab result back from full neurological/immune work up, and it came back completely normal except for ONE result, the abnormal presence of acetylcholine receptor ganglionic ​antibodies, which at a squarely borderline result I got, have the effect of sitting on the receptors of autonomic nerves and keep them from signaling effectively if at all, WITHOUT damaging them (the presence/extent of damage if there is any is to be determined with an upcoming biopsy).

I can't sweat, I can't stand very long, my stomach is in shambles, I lose my words all the time, my sleep sucks, I get horribly dizzy and the floor starts moving underneath me. BUT-

I was never crazy

or over reacting

or lazy

or "just anxious"

Like I was being led to believe by my family and some medical staff. There is finally a proven and "CURABLE" (i prefer the term highly treatable with high potential for full remission) link to how I'm feeling and why aggressive lifestyle changes have only gotten me so far. I feel like a giant weight has been lifted off my shoulders, and now that a cause has been identified, it can be treated. My family can fucking shove it, so can the ER nurse who said i was "just anxious" and discharged me after I refused Ativan.

Peace out y'all.

My life literally changed in the span of a subway ride. That's not a lot of time. It was 90 degrees out with high humidity, I was pretty sick, had been sick all year, and had already done 10 miles of walking that day.

The platform was so fucking hot. So was the train car. I walked on as one person, and didn't come out. I embarrassingly had to be rescued by the FDNY when I got to my stop, because I very suddenly couldn't walk, and couldn't remember what fucking day it was. Actually thought I was dying. 4 months in though, and it's gotten a little better.

I should have just stayed home and rested instead. I feel like I could've saved myself a lot of grief. OR- I can sue the MTA because WHY AREN'T YOUR PLATFORMS AIR CONDITIONED??

What a shitty birthday present. I literally got jumped by POTS, it stole my lunch money and called me ugly /j.

screaming this into the void

I see people here going through their absolutely worse, and I feel so bad for them.

I also see people occasionally scoffing at others.

"I've been diagnosed for 10 years, it doesn't get better" in response to a soul looking for a shred of hope, who maybe shared that THEIR doctor, who was able to take into account their unique circumstances, mentioned that they may have a chance at remission. Maybe.

I personally have post viral onset. There is a real chance at remission, even if it takes awhile, especially because prior to, i had no known medical conditions, no comorbidities. Sure, I'm still fucking miserable at times, but I can't say I at least don't try my best.

Don't instill false hope, but don't shoot them down either. You know? Be honest about the nature of POTS. Part of the reason why I was at first, privately distraught over my diagnosis, is because so many people tell me it will never get better, that this is my new baseline, no matter how what I do. I refuse to accept that without trying.

That's all :)

I've been making fantastic strides on managing my symptoms, I've genuinely started feeling almost like my old self, minus the willpower to do things I used to like, and being bedridden causes me to walk hunched over now (will work on that in PT) and I don't know which is the chicken- and which is the egg, but since Wednesday I've started getting mini adrenaline dumps again and I HATE THEM. I've gone a whole month without them.

Around the same time (Wednesday night) I quit smoking for my own sake, got a little lax on wearing my compression, and maybe started drinking 16oz of water less than I'd like in a day. I felt like I was doing so well I could slack a little, it felt good to slack. To let go a little.

But, these dumps happen when I'm laying down, at rest and not thinking about how I'm feeling, and I'm completely helpless to do anything in the moment to stop how uncomfortable it feels. It happens maybe twice a day, at least once later at night for some reason.

How does it feel? Like my heart's got a little hitch in it's giddy up. I checked my pulse at the same time, bad idea because it made me panic, and it felt annoyingly chaotic. For example, beatbeatbeat....beat...........beat?.....beat....beatbeatbeatbeat....beat. I even took another ecg while it was happening, but I only got a poor reading, not an inconclusive one (which suggests another kind of arrhythmia that the device can't identify, because it has limits). So, there's that!

Smart watch says sinus rhythm, which is great. My heart is structurally flawless, and every single 12-lead ecg ive recieved was either sinus tachycardia, or sinus rhythm, which is fine. I even wore a zio monitor for 2 weeks, it caught nothing besides really high heart rates, but a normal rhythm. And I've got no concerning symptoms. But, I'm human, and still get scared sometimes. ​

Did I accidentally set myself back a step by getting a little lax on the hydration and compression? I've also been smoking for 4 years now, and the last time I quit wasnt any easier. I'm going nuts.​​​ Why now when I finally thought I was getting some relief?

I am also dying for a cigarette. Send help, quitting sucks.

Did anyone else's symptoms suddenly become milder? It's a thing I'm struggling with. When you get used to chaos, sudden silence can feel like just as much as a threat.

I'm not sure what's fueling what, but I'm like- SO over it! It's like soothing two fussy toddlers at the same time who both demand your attention in two different places.

I have pots flares, no biggie, nothing new. Big ones that send me to the ER, small ones that keep me in bed at home, mini ones that just make me feel blah, but I can still function. But ocd? It tells me to be afraid of sensations I've felt a MILLION times at this point, and for some reason I listen?? Which then worsens my physical symptoms.

Heart starts thumping a little harder walking to the bathroom

- I check my pulse, feels fine, not too fast just hard. I shouldn't check at all honestly, it's a horrible compulsion I'm actively trying to break.

"You must be dying, check again"

I- who asked you?

Day 3 of heatwave, in which all I do is sit in bed, and mist myself because I stopped sweating, so i gotta make my own. It's exhausting, the heat is exhausting, I'm exhausted. I can't afford a window AC, so I make do with fans. But fuck, I'm even too tired to get up to grab food, so I just don't. This is miserable.​​ I'm miserable. Is this the heat doing me in, or is my body finally giving up. I can't tell.

I FINALLY got a diagnosis yesterday. ​Cardiologist kinda, didn't wanna give it to me? Something Something "even a tilt table test isn't definitive" yeah ok dude. He offered to send me to electrophysiologist, I accepted.

So, he prescribed me metroprolol. Uh oh!

Now, I do have an hyperandrenergic response. But I suspect it's in response to a low blood volume. I don't want my blood vessels to dialate, and my resting hr to drop, they already don't squeeze right off the bat and i get bad pooling, and my resting hr is pretty ok. Until I stand, and the adrenaline dump starts. If my blood volume truly is as low as i think, based on how well I respond to oral and iv hydration, if its low, wouldn't metroprolol cause me to lose my compensory response to low blood volume when I stand (spike in bp, spike in hr) wouldn't I just feel even worse? If I hydrate as aggressively as possible, I might not even need the metro. I've been salt loading the last 3 days, and while i don't feel totally symptom free, it's been scarily calm in comparison. ​​

I didn't even get to talk to him about it becuase he rushed me out. My next appointment isn't until November. ​

Oh, and I stopped sweating. Is that normal?​

Hi all.

I'm not having a great time right now. On top of recently being diagnosed with a chronic illness, I already had pre-existing ocd that primarily follows a health theme i.e. body checking, hypervigilance, avoidance of people, places or things i think could make me ill, etc. contamination.

Since about 6pm last night I've been stuck in a gnarly loop of body checking and googling body sensations. Can't tell you how many times I've checked my own pulse, thought it was too fast/too slow, and then performed a google search. At least 50 fucking times.

I don't know how to trust my own body, i can't stop checking my smart watch, ​and I just want some fucking peace. My brain keeps telling me I'm dying and so I'm stuck in this loop looking for reassurance that never comes, becuase the goalpost gets moved and suddenly the evidence isn't good enough for me. I've been crying all fucking morning, and didn't get much sleep.

AND, my therapist is on vacation all week. But, she doesn't specialize in compulsive behaviors, so I have no coping skills. I need help, I already have enough on my plate, I can't go on like this. I'm so scared of my own thoughts.

I'm tired of existing in a constant state of fear. Of self pity, of bitterness and resentment at my new normal. I'm tired of waking up and crying every morning. It's exhausting, and it robs me of the joy I can find during the day.

I might never be completely symptom free, and that's ok. I can try and get as close to it as possible, but I've decided that I'm tired of being scared of the process. The least I can do is try. Yeah it'll be awful at times, it'll be terrifying and I might want to quit and go back to being completely bedridden, but I can at least try.

I hated myself for the longest time. This isn't what I wanted for myself, still in my 20s. The old me might be gone for now, the go getter who took pride in being productive all the time within society to the point of exhaustion, and this new me might be kinda scary, but I'm glad she's here. I love her. HyperPOTS will not be my downfall, I'm learning that I can infact coexist with it and still find meaning and purpose. It'll just take time.

I was let out of the ER about 24 hours ago after a terrible flare. I am still new to all of this, figuring out what's normal and what's not, but I had a resting heart rate of 150+ that I tried to get down myself at home with no luck. It stayed that way for hours. I got spooked by a giant fucking wasp that found it's way into my bedroom, and I moved with speed I haven't had in months. With no compression on. Right after eating. Terrible idea. So, I went just to make sure it wasn't a structural issue or an arrhythmia.

I'm fine, and I got it down hours later with IV fluids, hanging upside down, and intentional breathing before they even thought to offer me a rescue dose of a beta blocker, but that was fucking terrifying. First flare of it's kind for me. ​To add to that, I also got completely waved off by a police officer who just gave me a shit eating grin and walked away.

Don't worry though! His sergeant forced him to apologize. Dude had an ego the size of Texas, and thought I was fucking with him when I said several times "I need help", because in his own words, "it happened earlier that day before i encountered you, and they were joking." Fucking please.

Anyways, today was much better in comparison. I got a lot done within reason, utilizing wheeled mobility and rest breaks as much as possible. Along with full compression, some horizontal exercise, and intentional eating (since I know some foods do trigger a flare). But, I'm scared it'll happen again, and I won't know what to do. I can't even enjoy the victory I had today, because I'm stuck on yesterday. I'm traumatized.

I am having a VERY hard time staying reclined AND comfortable most of the day. My back ends up hurting so much and that's even with supporting myself with pillows and whatnot. What do I do 😭

Like I know SOMETIMES my setup isnt the most constructive, but dang I gotta keep my legs up somehow!

It required a little bit of creativity, but i fashioned a shower chair out of a step stool and a trash bag because it was icky, ​and man, what a game changer. ​Just being able to sit and do my business instead of fighting to stay upright. Why didn't I think of this sooner??

I feel like I'm in this sub too much lol.

Wahoo!

Edit: Lost all that forward momentum by eating lunch and taking my binder off too soon, been in bed since 2pm. Its 7pm now. Oops. Had a flare. Maybe tomorrow will be better.

Do they just go back to being nobodies, or do they retain some sort of status even outside of the season? I mean, if they're special enough to be allowed to travel abroad (under strict watch) are they special at home too??

Idk just curious.

Hi.

Pending a confirmed diagnosis of HyperPOTS (finding a specialist has been daunting) after strong suspicion from my PCP (he wants me to see a specialist? but left finding one up to me), ER staff and EMT's after a poor man's tilt test that went miserably bad plus other symptoms that can't be explained by literally anything else because we all tried, I'm not sure how to keep myself functioning in the mean time.

I can't be active the same way I used to. All I do is stay in bed now if its not to pee for the 10th time today​. I can't go anywhere that requires long walks. I've had to modify my showers to keep them lukewarm or really short which SUCKS because I loved long hot showers. I experience adrenal dumps while doing literally fucking nothing and it FEELS just like a panic attack, it's terrifying. I'm literally being robbed of the joy and ability to do everyday things like standing up long enough to cook, walk to work, go shopping or just be fucking spontaneous, and it's getting to me. I am reaching my fucking limit.

And the best part is, is that a year ago this time, I was completely fine and actually full of life. I took it for granted.

Hi.

Really want a job I interviewed for. Went though 2 rounds and I feel pretty confident despite the terrible job market.

Started asking some questions along the lines of, I will I find a job really soon? And drew the 5 of wands, reversed which I interpret as my period of unemployment and piss poor financnes coming to an end soon. Asked for elaboration and then drew the 4 of wands reversed, which I take to mean I'm worrying about it too much. Which, I mean, I need employment, of course im worried?

Here's the kicker: I asked if I was setting myself up for disappointment and got the 7 of swords reversed, so I might be. But I don't entirely trust ANY of the readings I've done, because I'm worried I may have imprinted my want for this particular job a little too hard and influenced the answers. Actually going nuts. I've got one more interview to go to, but it'll be such a hassle to get to, which means commuting to and from everyday might be a hassle too. I kinda don't wanna go. I'm putting my full faith into the one I already went to.

Thoughts? Thank you :(