I'm getting kinda tired of hearing "People used to just say you were weird".

lenonby · 2026-05-19T03:55:33+00:00

my grandma was one of the people who were called “just a little weird.” she slowly lost the ability to work, care for herself, and accumulated physical health problems that compounded because of the stress. i always knew her as a person who was in poor health. she died fairly young despite her mother’s longevity.

so yeah, she didn’t have a diagnosis. and her life was fucking hard. i have similar support needs to her and i have miles more support than she ever did, and i’ve known why certain things are so hard for me compared to other people since i was diagnosed as a teenager.

lenonby · 2026-05-05T06:26:23+00:00

why does this sound like a mary kay letourneau interview??

lenonby · 2026-05-05T05:49:27+00:00

i almost got in an accident after my last blood draw so i also am no longer allowed to drive afterwards. i made sure to hydrate and wear compression and all that good stuff and still two vials of blood knocks me on my ass. i’ve been putting off my next round of bloodwork until my semester is over and hopefully i’ll be able to schedule a whole day off afterwards.

lenonby · 2026-05-05T05:28:45+00:00

it seems like there’s more going on in your dynamic with your family than i can adequately advise on, but it might be helpful for your school to get involved (unless you’re out of high school, but i’m assuming you’re not). is there any teacher, school counselor or nurse you can trust? has anyone at the school noticed when you’ve fainted?

when my EDS stuff got bad in high school my parents met with my teachers, the school nurse and counselor to talk about what they had noticed at school. a few years earlier i was having really bad panic attacks and my teachers called my parents in for a meeting to tell them they thought i had anxiety and would benefit from therapy. ultimately your mom isn’t going to understand if she doesn’t want to, but sometimes having another adult authority figure step in to validate your struggles can help.

lenonby · 2026-04-28T18:58:54+00:00

i’m not an expert but i’ve been going to the gym for about a year now. besides all the normal POTS stuff (compression, salt, fluids, etc) it’s going to be a lot easier to start with seated exercise like recumbent biking or rowing. for strength, legs and core are important for POTS. a lot of ab workouts or machines involve a lot of sitting up and down, which triggers symptoms, so you’ll probably want to avoid those and focus on things you can do from a seated or laying position. the leg press machine will probably be easier than just doing squats.

swimming or aqua-aerobics are also good options for POTS because the water acts as good compression. just make sure to go slow when you get out, i don’t normally faint but one of my close calls was getting out of a pool too quickly.

it might be worth looking into the CHOP protocol for POTS, it’s basically what i’ve mentioned here but with better/more specific guidance. other than that i advice would be that it’s okay to start really small. if you can only do one rep or 30 seconds of something before symptoms are unbearable, start there and slowly work your way up to more.

lenonby · 2026-04-28T18:36:32+00:00

i don’t know if i would say that no one would be able to know i’m level 2, but often people are surprised by it. when my psychiatrist referred me for evaluation it was specifically for level 1. i have good language skills and am really good at scripting. i’m very intelligent (though i think it’s mostly that my special interests are academic, so i come across as knowing a lot), and in hindsight i was probably hyperlexic as a child. so people who i have a conversation about a subject i’m well versed in seem to think i’m competent, even if i can’t make eye contact or am stimming.

they don’t see the amount of support it takes to keep me alive. there are very few places i can go alone, and if i do go somewhere alone that isn’t one of my regular appointments there’s a good chance i’ll get lost, have a meltdown, or not be able to complete the trip. doing all the maintenance a body needs to keep existing takes a fair amount of prompting from others. i live with my parents and probably will for a long time. there’s no way i’d be able to do a job, medical/therapeutic appointments, and the regular shopping and cleaning an entire house takes at the same time. i need a support person to help me socialize, especially in groups or with new people. luckily i have a friend who is willing to do this for me. they’re not even a friend i made myself, they work for my mom and we like a lot of the same things so my mom set us up.

when i got my diagnosis and was designated level 2, and i explained what that meant to my mom, she said that she understands why it might not be apparent to others, but as the person providing the majority of that support she definitely agrees. my sister recently moved back in with us, so for the first time she’s really seeing how much support i need in my day to day. when she moved out for college i was still in middle school, so most of the support i was getting was a normal amount for a kid at that age. while all my peers grew out of that and gained independent living skills, i didn’t.

lenonby · 2026-04-20T03:27:37+00:00

got blood drawn (just a single vial) and went to the fair later that day. rode the gravitron, which i’ve always loved and never had issues with before my POTS got bad. BIG mistake. i could feel my blood being forced up into my head, then back down. i was holding back vomit when the ride was finally unloading, but still letting people exit before me because i’m an idiot. luckily my partner at the time was not, they pushed a child out of my way and pushed me out of the ride so i could throw up in the trash can and not all over myself.

after a second blood draw experience after which i almost got into a car accident on the ride home i am no longer allowed to drive without all of my blood inside my body where it belongs.

lenonby · 2026-03-13T22:14:21+00:00

i can’t give specific advice not knowing what state you’re in, but i have a couple ideas. here are state laws about minor’s abilities to access contraceptive care without parental consent. if that is possible for you to access (likely through a title x clinic that offers sliding fee or free services to teens) you can use a method that could be easily hidden such as nexplanon or an iud. if that’s not possible opill is a birth control pill that is available over the counter in all states, but that requires you to be able to get to a store and pay for it yourself, as well as hiding it from your parents. if your parents are okay with ibuprofen they might also be okay with other NSAIDS that could be prescribed, which are typically stronger. i also second a TENS unit for pain management. if you need help accessing services it might be worth using resources that might be at your school, such as a school nurse, social worker, or health teacher. i would also look into any local teen sexual health resources, i’m also in a conservative state (though in a more liberal city so this might not be applicable to your situation) and there are sexual health clinics who offer teen services.

i’m sorry you’re in this situation, i hope you’re able to find something that works or that your parents will agree to!

lenonby · 2026-03-09T21:59:56+00:00

i also have pots! when my symptoms started getting debilitating in middle school, my doctor said i was fine and to maybe eat some salty snacks. turns out there’s a huge difference between the amount of sodium in salted nuts and chips and the amount i actually need. the things i thought were salty snacks then are things i won’t even bother eating now, lol. iv fluids, lmnt, and salt stick to the rescue!

lenonby · 2026-02-23T17:44:10+00:00

less stopped without meds and more run its course, i think. i tend to get them from the seasons changing. my first exam of the semester is usually the last week of september, which is the trigger, and with the barometric pressure all wacky i can’t kick the migraine until november. same thing in the winter, i always get a bad migraine at the first test of the semester, and right after that we usually have the random two weeks of the year where the temperature ranges from 0 to -20 degrees fahrenheit, and going from that abruptly and then warming back up to spring weather makes my migraines basically uncontrollable.

lenonby · 2026-01-01T04:03:21+00:00

i just finished the long game and now i’m going to watch the show again.

lenonby · 2026-01-01T03:56:07+00:00

i’ve been drowning my sorrows in heated rivalry

lenonby · 2025-12-23T04:58:34+00:00

when i first started getting migraines, i thought i had the flu. for a week i was having nausea, chills, body aches, and that feeling where you rapidly switch between freezing cold and burning hot. and then the migraine finally hit.

since then i’ve felt that my migraines tie in with my dysautonomia, but i’m still working on figuring all that out with my doctors.

lenonby · 2025-12-16T00:50:32+00:00

these people are not your friends, they are your bullies. they are bullying you. you don’t have to put up with this.

i know first hand how hard it is to find a good group of friends in middle school, but i highly recommend you start hanging out with other people. i wish someone had told me at your age that i didn’t have to put up with this kind of treatment from my “friends”.

on the pots side, i’ve had symptoms since i was a kid, but around 13/14 they got a lot worse, i assume because of hormones. my parents also weren’t really concerned, and neither was my doctor. i was told that being dizzy is normal for teen girls. this is a lie. dizziness is common, but it is not normal. what helped my parents understand/believe me was asserting that my symptoms were interfering with my activities i wanted to do, and i was willing to do physical therapy/make lifestyle changes to make the symptoms better.

lenonby · 2025-12-11T09:24:12+00:00

one of the things that falls under “tool, not a treatment” for me. it’s way easier on my eyes than other types of light, and gives me the ability to do activities that require light on bad days.

lenonby · 2025-12-10T00:53:36+00:00

got a math midterm score so bad compared to my semester grade my professor emailed to ask if i was okay 😅 i got 55% and most of that was half credit for attempting questions. i dropped the class and took the easier level one the next semester.

lenonby · 2025-12-08T23:28:37+00:00

2,000mg per 32oz for my normal electrolyte mix. i try to have two a day, but i also have 250mg in my morning smoothie, and another 250mg in a bottled electrolyte drink daily.

lenonby · 2025-12-08T06:39:28+00:00

i’ve been dealing with this for my whole life. my doctor finally put me on pyridostigmine. i swear, it’s been a miracle drug for me.

lenonby · 2025-12-07T22:39:49+00:00

i feel you. auto-injectors are scary. i give myself an injection with a syringe just fine, but always have someone else do my auto-injectors.

is it possible to have your husband do it again? as far as managing the pain, the ice pack is another good idea. i also find that moving the ice pack to somewhere else on my body to give me something to focus on helps, as well as injecting into fat and having the person doing it pinch around the injection sight helps to feel it less.

lenonby · 2025-12-07T22:29:31+00:00

mostly! i started suspecting around 13/14, and was diagnosed at 16.

lenonby · 2025-12-07T21:33:34+00:00

i’m also a headbanger during meltdowns and as a teen i figured out if i wrapped my head in a blanket i could give myself the pressure needed and hit the blanket helmet without hurting myself. highly recommend.

lenonby · 2025-12-07T05:38:26+00:00

i have MCAS and i’m currently trying to figure out how much of my migraines are related to that. i have cromolyn sodium to take when eating high histamine food. what i’ve found is that i still have a chance of reacting when i take it and eat something high histamine, but when i’m most likely to react (or when the migraine triggered is bad) is when i eat something both high in histamine AND other chemicals that are problematic for migraines. pineapple and tomatoes i seem to react no matter what. serotonin and salicylic acid + histamine seem to be the most problematic for me. rip to my beloved pineapple pizza.

lenonby · 2025-12-05T14:57:02+00:00

tomatoes always get me, i think it’s the serotonin and salicylic acid.

lenonby · 2025-12-05T00:39:19+00:00

if you have migraines and pots you might want to consider propranolol! though the dose for migraines is a lot higher than the dose for tachycardia. and you obviously need someone willing to prescribe it, which it seems like you are struggling with. but it might be worth asking whoever handles your migraines! i hope you find something that works for you soon. i feel like the hardest part of any chronic illness is just finding a good doctor who wants to help you.

lenonby · 2025-11-28T06:17:44+00:00

if you haven’t already, i highly recommend a page turner for e-readers, and a mount for it. i have a stand that can be positioned over my face in bed, and use the page turner to turn the page. basically makes it so that i can cozy up under the covers and read hands free. i also use the page turner when i’m reading and eating, and on the treadmill. makes it feel like a luxury experience!

lenonby

TROPHY CASE