#hyperpots

[the-tamagotchi-process]

Oh what the fuck? what. the. fuck. do you mean my condition is so medicalized that when I’m looking up information about it, I can’t find the definition of a word…. 😭

Hyperadrenergic if anyone can help

[only-knives]

i've been realizing lately just how much POTS disables me and it makes me sad that i spent over half my life thinking it was all my fault. my symptoms started when i was 10.

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.

people just blamed me and pushed me. i didnt get diagnosed until like a year ago. at 21 years old. if my parents had actually fought for me, i might have been diagnosed earlier, and maybe gotten some of accomodations and mobility aids i needed. it's not fair. i wish disabled children - and disabled people in general - were treated better.

[aibidil]

friends, I finally got my HyperPOTS diagnosis today

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

[lmwjohnson]

Getting ready for my annual physical by watching TikToks about the autonomic disorder I clearly have but has taken me decades to get diagnosed because I’m fat.

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

Hoping to be fired up enough before the appointment so I’ll advocate for myself better.

[exmowitch]

How do you have patience with friends who constantly make your pain their own? I understand as humans our natural response is to compare and contrast so we can better understand someone else’s experiences. But my pain was always mine. It was never yours. 

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. 

Idk.. it just pisses me off

[oh-gee-no-way]

Health Update

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.

Tilt table was crazy though I had chest pain, shortness of breath, felt hot, sweating, leg tremouring, and felt lightheaded. I still don’t know my exact numbers (they did not show me the direct test numbers) but I did hear the tech say my HR was over 140 and it sure felt that way. My BP apparently went real high too but I don’t know the number. Typically I would have just sat down by minute two I don’t typically wait out the waves cause my legs get too shaky to stand. I didn’t faint but I have only done that like twice in my life so I was not surprised I didn’t.

[dysautonomia]

Fellow zebras, I'm out of ideas. I have hEDS, hyperadrenegic POTS and I suspect CFS/ME. My doctors tell me to do more sports to gain more muscle. But every time I try to do some exercises and every single time I go to physical therapy, I end up worse. My back hurts more and more and I'm so exhausted up to the point that I can't stand up some days. Sitting is becoming more and more exhausting. I even tried a recumbent bike but I'm becoming worse. The doctors say that I could walk again if I only try hard enough, but no matter how much I drink and how much salt I consume, I get worse.

I don't know what to do. They tell me I need to gain muscle, but whenever I try, the pain gets overwhelming. What can I do?

[oniiizuka]

meal prep 6-23-26 (wip!!)

ingredients I used:

* tony chachere spicy cajun seasoning (creole seasoning is fine too. 2.78 for the spicy cajun seasoning at 7 oz, 3.36 for 17 oz of the creole seasoning. both are great! Slap Ya Mama is also good, but Louisiana Fish Fry has a brand of cajun seasoning that is the cheapest overall option. Haven't tried it yet. 1.82 for an 8 oz container.) * salt (.94 cents! Great Value brand) * black pepper Tone's Restaurant Black Pepper at 8 oz for 8.48 appears to be the best deal, but i don't often drop that much on spices at once. A smaller option for a similar value would be the 3 oz great value black pepper at 3.58. * (insert the southwestern and weird mexican seasoning blend i use) * miracle whip whipped mayonnaise dressing is the generic name, it's by Great Value at 3.23 for 30 oz. If you want the name brand, Miracle Whip is 5.48 for 30 oz. I used Miracle Whip, but I would recommend just getting the generic brand. * mustard .98 cents for 20 oz of the Great Value brand. Tastes fine to me! * chicken bouillon I got the Wyler's brand at 2.97, it says it makes around 25 cups of soup. A better option would probably be going for the loose chicken bouillon. You can get a 7.9 oz jar for 2.54, (Knorr's brand), which is gonna make a lot more soups. Chicken stock is also an option, I don't use it too often. Instead, I usually buy my chicken with the bone-in and save it to make homemade chicken broth. * Vegetable oil * Butter/margarine * 1 can of sweet peas * 1 can of carrots * 1 can of mixed veggies * bag of brown onions * 2 small eggs ( * 2 packets of cajun brown gravy * peanut butter * jelly * pork loin roast * rice * shell noodles * bread

Recommended ingredients I didn't have:

* Celery * Fresh Garlic * Garlic Powder * Onion Powder * Fresh Potatoes Meals prepped: Peanut butter and jelly sandwiches + bites Fried rice Chicken Noodle Soup Tuna salad Roast Peanut Butter and Jelly Sandwich Bites: - spread peanut butter on both slices of bread to prevent the jelly from soaking into the bread - take small chunks of jelly to spread onto the peanut butter. theoretically i imagine if the bread + peanut butter is cooler it wouldn't be so hard to spread but i havent experimented with this yet - freeze sandwich. - either thaw or cut into small bite-sized chunks. Tuna salad: - boil two eggs, dice them - cut half an onion, full onion for 2 cans of tuna. dice it. i did bigger chunks since i did have much else to add in with the tuna salad - 1-2 cans of tuna - dash of relish - no idea how much mayo to add, i just kinda squirted it in and used my hands to mix it up. this is used to kinda combine everything together so i doubt you can screw it up. if you do, chop up some more onion and throw another egg in or some more tuna. might be best to start with one can of tuna if you're inexperienced as i was when making this. - squirt of mustard - sprinkle in some seasoning, i personally used tony's and some pepper, i like stuff spicy and salty! - you could add in chicken as well. fresh celery would also be nice. i've heard of people adding pickles, apples, pecans, and other types of nuts. - toast some bread, make some sandwiches, or eat with crackers and enjoy! or just eat it as it comes, no judgment. Roast: * leave roast in fridge to defrost, this way if your meat doesn't fit in the crockpot, you can safely cut some off and refreeze it without it entering the temperature danger zone and use it for other meals!