#periodic paralysis

[pickle-the-lad]

Infrequent Paralysis Flag

For those with some type of primary or secondary periodic paralysis. It is also for those who can't get a diagnosis due to a lack of doctors or lack of care from doctors. And mental and physical disabilities that causes infrequent paralysis.

Edit: Oh yeah!

Dark purple is for paralysis.

Red is for physical disability.

White is for invisible disability.

And the gold heart is for those who take care of you in your moments of weakness.

[wtf-is-cheese]

DYSTONIA IN THE ARMS AND PARALYSIS IN THE LEGS. DOUBLE HOMOCIDE

[systems-overloaded]

(I had double incision top surgery)

HOLY CRAP MY CHEST LOOKS SO GOOD!! IM SO HAPPY!!

I've seen ALOT of post op photos. I had watched multiple videos of the actual surgery I was getting, and also looked at a FUCK TON of pre-op, post-op, and other healing stages photos.

I have literally never seen a chest look this good at any of the first healing stages. That's insane, I'm so happy.

My actual surgeon didn't have any photos of their masculinizing top surgeries, even though they'd done it multiple times before, so i kinda felt a bit nervous about that. I wasnt sure exactly how it'd look, even though i know the initial stages can look gnarly but heal phenomenally.

IT. LOOKS. SO. GOOD.

I'm so happy and also a bit in shock about how good!! Ahhhhhhhh!!!

(I really want to share photos tbh, but i have tattoos that could be identifying so i won't here. I may post somewhere else with my tattoos blurred. Maybe transbucket?)

~~~~~~~~~~~~~~~~~☆~~~~~~~~~~~~~~~~~~

Anyways the surgery went perfectly!! My mast cell was totally under control!! My chest has healed so well!! I didnt need the ICU and have been recovering at home!!

He was able to hook up my nerves on each nipple, so i should expect sensation still! AND he was able to preserve my tattoos, which all have extreme emotional/sentimental significance to me!

All the issues I have been having, are sooooo much less than we were expecting, and all the doctors, nurses, and just medical teams for this entire thing have been so good!! Especially the anesthesiologist and pain team that worked with me for the actual surgery.

So, besides some hiccups and more mild expected issues related to my other health conditions, I'm doing so well!!!

This is such good news, and means a couple of my conditions are much more controlled than I thought!!

(the "more" section just has more detailed health info, and my experiences so far)

~~~~~~~~~~~~~~~~~☆~~~~~~~~~~~~~~~~~~

I did have some significant & expected prolonged issues from the anesthesia.

I didn't wake up for multiple hours, then woke up but was still totally paralayzed for multiple hours and couldnt communicate that so they thought I wasn't waking up for even longer, RIP.

Then once my right side started to return, my left was still almost totally paralayzed for over an hour too.

(We're hoping that was just a hemiplegic migraine, because I do get complex migraines and have had hemi-paresis during some. That doesn't follow the pattern of my paralysis episodes from my channelopathy (which is why i was paralyzed still for so long.) So the assumption is I was having paralysis episode and a hemiplegic migraine at the same time.)

I'd also had significant increased weakness for about 2 days, I still have increased weakness now, over a week post op but its probably not related to the anesthesia directly. Most likely my mitochondria taking a hit, contributing to overall fatigue, worsening of my channelopathy, and my adrenal issues.

There were also some issues getting a new pain medicine since i had a lot of adverse reactions to what was initially prescribed. But the doctors have been very good about helping me find alternatives.

They'd gave me a nerve block on both sides initially (which apparently is almost never available, but i was able to get!!), and a localized pain pump for the first 3 days, then a muscle relaxer and pain medicines. I've couldnt take the muscle relaxer or the pain meds due to like severe adverse reactions, so now that the localized things ran out, I've been suffering a bit while waiting for a dr to prescribe something else for me.

And I'm actually still needing increased steroids for my adrenal issues, which is considered "abnormal" to still be needing at this point. I'm hoping once I have a bit more pain control from these new meds we're trying, then I won't need as much steroids. *fingers crossed*

Then, I have an adhesive allergy, and we've been able to avoid tapes and adhesives almost entirely. I haven't had any blistering from the paper tape they've used in some areas. I did have some itching which I've been taking benadryl for and it is more controlled now.

~~~~~~~~~~~~~~~~~~~☆~~~~~~~~~~~~~~~~

I feel very very blessed. ♡♡♡♡♡♡♡

Im so grateful I was able to get this surgery, to have it covered entirely by insurance, to have such a good team of doctors helping me, for my body to have done so well with this whole process, that my chronic illnesses have been controlled as well as they have with my current treatments, that my doctors are helping me find alternatives for pain control, that my chest has already healed so well, that i have the supports in place where i can recover at home, even with prolonged issues or temporarily worsened symptoms, that the surgeon could hook up both nerves and preserve my tattoos. I am so blessed and I am so grateful, and I am so happy, I'm so excited for when its all healed up.

[moss--bug]

trying to drink my strength elixir (body armor, only sports drink i know has potassium) but it's locked behind an impenetrable blockage (the lid, which I can't open because I'm in an episode, WHICH IS WHY I NEED THE POTASSIUM TO BEGIN WITH)

[bookiezzz]

i feel so heavy, it’s so hard to walk. i can barely do it. i feel like i’m going to have paralysis again and im scared

[dancingpieces]

I have a decent chunk of medical things, but not all are diagnosed (took me 16 years to actually get diagnosises tha treally helped). The one that is probably rarest and i never hear about is periodic paralysis, though I haven't officially been diagnosed cause I would need to get blood work during it which would be pretty difficult cause I can barely move, lol. I likely have Hypokalemic periodic paralysis since taking potassium when I feel it coming is basically the only thing that helps.

Basically I'll start to feel heavier and heavier throughout the day (and get some other symptoms), and it will get harder and harder to get myself to move until I become almost completely unable to move my appendages. It's the worst in my legs, so I'll sometimes be able to do bigger movements with my arms during an episode and will generally be able to move my fingers to scroll or do stuff on my phone if I have it in my hand. I don't lose feeling at all, it's just feels like my body isn't getting the message to move when I tell it to.

I didn't even know that paralysis could just appear and go away, so for a really long time is actually thought I was just lazy or really tired when it happened, and just wasn't trying hard enough to move, I didn't buy that I actually couldn't move. But it's gotten a lot more frequent in the past couple years and I had to start looking into it and how to help myself for it. The actual almost completely unable to move last about 30 mins to an hour, but I'll get the heaviness and difficulty moving smoothly for hours around it.

it makes me sad that the same few conditions consume disability discussions. the disability community is so diverse and I know there are other people out there who have diverse experiences. I think the community needs to do a better job of lifting up the voices of people with rare conditions (or even just conditions that aren't spoken about) I want to hear from people who have different experiences from mine. people with rare diseases often have very unique experiences and it's really shameful that we don't get to hear those voices very often.

anyways, if you have a rare disease (hEDS is not rare) or a condition that isn't talked about often feel free to promote your blog or share something on this post.

[canisalbus]

Hi, this is a weird thing to say, but I just took a nap and had a dream that Machete was in my kitchen, cleaning blood off of himself (the blood is on black gloves) with my sink faucet, spilling bloody water all over the floor, and staring at me while I suffer from period cramps on my bed (which was some reason in the living room. to clarify I'm transmasc so I HATE periods). Unsure if the blood is from me or some victim of his

The part that doesn't add up is Machete allowing bloody water to spill all over your kitchen floor, unperturbed, like it's nothing. He would never.

[phoenixmetaphor]

resident evil cowboy au??? resident evil cowboy au!

or maybe more like ‘western au’ but whatever. someone mentioned the words ‘cowboy au’ within my circle and that was all it took, i was gone on another extreme au adventure. have brainrot, will travel.

bonus initial concept sketch below — leon is older in it than in the comic and has graduated to dual pistols. chris remains grizzled.

[calicotabbies]

Little known fact about me, when I was in high school I used to be completely obsessed with Vidcund Curious from The Sims 2.

Why Vidcund? I. I don’t know.

[raidante]

update on life I got diagnosed w a very rare genetic disease that causes me to have random episodes of paralsys and permanent muscle damage each time I have these episodes!!!!!!!!!!

[pickle-the-lad]

How do I get diagnosed with periodic paralysis? Is it periodic paralysis? At this point, I'm not looking for a cure. I'm looking for an answer. This has been a problem since September of 2022!! I know people go longer without an answer, but I went months thinking it was finally over, just for to start again. If this is going to be the rest of my life, I need to know why.

They have been going for anything, including seizures, but checking if this periodic paralysis. When I've been saying, "It might be periodic paralysis, can we check?"

If someone would do at least one of these tests!

Cuz I would like to know what to expect of my future.

I hate not being able to do anything... I just had another paralysis event, and I'm still having muscle weakness from it...

[wtf-is-cheese]

Kids really have no filter. I had a little girl come up to me today and deliver a whole villain monologue about how she has seen me walk and that Im not paralyzed. I then said no, Im not paralyzed right now, and moved my legs.

When I tell you this child saw the opportunity for a moment in the spotlight and hit it with a truck, I mean it.

She started yelling at me, in the middle of the crowd, to GET UP I KNOW YOU CAN WALK YOU CAN MOVE SO GET UP AND WALK LIKE A NORMAL PERSON.

To which I rolled away nervously as the girl kept on following me, yelling loud enough for the queen herself to hear it.

[wizardnuke]

this is a lighthearted little informational about parasomnias (disruptive sleep-related disorders) that happen when you're falling asleep/waking up. because some of the tags on my exploding head syndrome poll are blowing my mind. more than the ehs does. i am not a doctor i am just parasomnias georg.

hypnagogic/hypnapompic hallucinations are hallucinations that happen when you're falling asleep/waking up. they can be visual, tactile, or auditory. i most often experience auditory hallucinations, and i hear footsteps and indistinct voices. a lot of people hear someone calling their name. when i was little, i had tactile hallucinations that felt like someone was touching/holding my hand. 70% of people experience hypnic hallucinations at least once, plenty of people experience them regularly, and they're completely harmless and they're also not a warning sign that you have or will develop any mental illnesses that involve hallucinations/psychosis.

hypnic jerks are that falling sensation you get as you're falling asleep. we know this one. it's harmless.

exploding head syndrome (or episodic sensory cranial shocks, which doesn't sound any better) happens when you hear a very loud sound (banging, crashing, gunshots, etc) as you're falling asleep/waking up. some people also experience visual/sensory effects (flashing lights or a popping sensation) with it. they're uncommon but once again, completely harmless despite the whole "feels like brain exploded" thing. ive recently learned that a lot of people only hear a sound/see lights and don't have a corresponding popping sensation in their head, which i am jealous of.

ehs is not the same as hypnic hallucinations - hypnic hallucinations can absolutely be startling/scary, but they don't have a jumpscare factor. if you hear someone whisper your name and it kind of wakes you up, that's a hypnic hallucination. if you hear someone scream your name and it makes you startle awake kind of like you would with a hypnic jerk, that's ehs.

hypnic hallucinations, hypnic jerks, and ehs are all exacerbated by stress, a lack of sleep, and medication use. i 100% have them more often when i'm stressed/overtired, and fairly recently i managed to triple-threat myself by starting a new medication and had like ten instances of hypnic jerks/ehs in one night. but that's okay! the brain does weird things when you're stressed and tired, and it often continues to do weird things even when you're not stressed and/or tired just because that in-between sleep/wake state is a weird liminal zone for your brain and sometimes it sets off the wrong signals. they're not a sign of underlying mental or physical illnesses! of course talk to a doc if your symptoms are concerning or getting in the way of sleeping, but. yeah. it's all good!

[chicago-geniza]

UPD: ordered dim sum delivery to eat on the balcony because I tried to stand up and my bad leg won't let me walk. What a beautiful Saturday

[lilac-rose-writes]

Day 4: Least Favourite

this is messy as HELL and i use "least favourite" very tentatively. i love all of these characters, and don't get me wrong, i could write a whole ESSAY on this man. but also ykykkk he's probably killed dozens of kids and i cannot for the life of me draw the janitor sooo <3

[pumpumdemsugah]

My sleep paralysis has taken a new form to deal with my stress

Out with feeling like someone in slowly pulling my duvet or blanket off my sleeping body and in with feeling someone thin and long crawl on top of my sleeping body and curl their body around me. Do I wake up screaming? Yes

No, i am not being haunted. My sleep paralysis tends to be...very involved when I feel stressed or tired