#hyperpots

i'd spend hours or even the entire day in the nurses office, unable to do anything but lay down. when i went out of the classrooms, i'd often need someone with me to make sure i didn't fall or faint. i couldn't participate in gym class most times.

but at home, and in middle school and beyond, i was forced to do things - to the point of pain, exhaustion, injury, hyperventilation, and likely hypertensive crisis. my symptoms only worsened, and the list of things i could do narrowed and narrowed.

If I have to have an awful chronic medical condition, at least it has a name as hilarious as HyperPOTS

I have EVERY SINGLE ONE of the same symptoms, but somehow they think my POTS will just go away if I lose weight.

And here I am returning to tumblr because I need a safe, somewhat anonymous space to talk about this shit show. 

long story short? well its still gonna be long so buckle up. 

my health has taken a nasty turn. i mean waking up blind, unable to move, bp 200/150+ type of turn. IIH, hyperPOTs, dysautonomia, etc are all suspected. ive dealth with being limited and having flares and people trying to push me beyond my limits my entire life. but now pushing me beyond my limits could result in a deadly episode.... so when i say no it means no. 

i was very calm today bc it wasn’t this person’s fault per se but after being in the sun without access to hydration (when i was told this wouldn’t be the case) though for a short period, I was really sick. i needed to sit down someplace cool with water or I was going to need an ambulance soon (which I didn’t express but you could probs see) and while i am grateful she took it seriously after me saying no i cannot walk around with them i am happy to sit here once inside while they do their thing - but then she was sobbing, and i was having to comfort her - UNABLE TO SEE OUT OF MY EYE, HAVING TO COMFORT HER that its okay that I am fine it happens and its not her fault.... but I didn’t have the energy to calm her down when I didn’t to monitor my vitals and keep calm and hydrate. 

me calming her down for something happening TO ME isn’t anything new, one times was me being dizzy after telling her repeatedly i need to sit down, no i can’t push myself anymore, and I started having tremors and got seizure-like. usually its when i am dealing with my own mental health stuff. its so draining and in ways its so toxic. i don’t think its intentional that she is aware of her toxic behaviors, but she lacks such depth and awareness that there is no room for communication. and any communication (and trust me we’ve rounds and i’ve blocked her multiple times) goes right over her head. she simples cannot understand. 

today she compared my life threatening symptoms to her claustrophobia. and i am not saying that this isn’t just as real for her -- i have my own OCD issues and I get it, it makes it physically impossible, but i guess it hurt as it always does that my word and the common send of hey my blood pressure is sky rocketing and I am going to have a bad episode and I can feel the pressure building in my neck just wasn’t cutting it.. and as much as my anxiety consumes and freezes me and i feel very much like I am dying, I will not die. But you know what could kill me? These scary episodes if I keep pushing myself, not listening to my body or getting treatment if my BP doesn’t go down. 

Got diagnosed with HyperPOTS yesterday 

So now I have Hashimotos and HyperPOTS and some vague hypermobility issue 

I got told by my neurologist to see an allergist/immunologist about my hives and possible MCAS and hopefully if I get in I can see my rheumatologist or neurologist again and look into EDS (my neurologist said  looking into my pain and joint pain was the next step)

I still feel awful but I feel less awful than when I first got the Hashimoto’s diagnosis because my synthroid does it job well so there is hope.

For now I will still have to lie down a lot.

Idk if being mild to moderate is better or worse, because some days I can still go on short hikes and strenuous outings? But then 72 hours later like clockwork I'm bedbound, panting to catch my breath, too weak to lift a water pitcher.