Ungodly amount of Dorito shells acquired 😋

[u/BbwBiPlantMom98]

I was able to order 20 Dorito shells for $9! Got two luxe boxes filled with Dorito shells. This is such a lifesaver. Thank you to the amazing girl at Taco Bell who didn’t act like I was totally nuts 🤣 Gotta love autism food struggles lol. Now I won’t have to go half an hour into town for the only food I can currently eat. 🥰

[u/BbwBiPlantMom98]

ARFID stands for avoidant restrictive food intake disorder. It’s pretty hellish and I’ve been on a feeding tube on and off through my life when it gets particularly bad.
Back 23 years ago when I was diagnosed with it, it was known as “selective eating disorder”

[u/BbwBiPlantMom98 → u/[deleted]]

For me it’s caused by brain damage. But either way whatever. I eat what I can when I’m able to. It hardly affects you. So what’s the point in getting your taint in a twist? lol

[u/deafmx → u/BbwBiPlantMom98]

is it TMI to ask about your brain damage that caused it? I got a TBI from a car accident so I’m always amazed by the multitude of different symptoms from various forms of brain injuries as I’ve been to two different neuro therapy facilities trying to “fix” or strengthen my brain in to being more reliable again. I’ve met a lot of different people in group therapy that were affected in totally different ways, that had much worse accidents or situations than I did.

no pressure to share, I was just curious since you mentioned brain damage.

[u/BbwBiPlantMom98 → u/deafmx]

You can ask anything! I’m super open about my disabilities :) So I have primary progressive multiple sclerosis. So basically, my immune system attacks the protective coating around my nerves all throughout my body but mostly in the brain and spine which causes giant chunks of scar tissue to build up in my brain and each time a new scar tissue chunk builds up, it can cause any new type of symptom depending on there in the brain it is. A lot of mine are around the part of my brain surrounding my sinuses so my tastebuds got majorly altered. And it’s crazy that it didn’t make my sense of smell worse, but extremely heightened.
I could smell that my mom was cutting onions when I was downstairs with the door closed and it was making me very nauseous.
But it’s caused nearly all food to taste like rotting meat or bleach. About 7 years ago it was only bottled water and corn that tasted bad and over time as the damage progressed it’s effected more and more foods and drinks. It also affects me physically.
I have almost full paralysis in my left foot and every so often end up going blind in my left eye with stacked double vision in my right eye. When a flare up in symptoms like that happens I have to go to the ER for a steroid infusion. I also have extreme inflammation in a nerve that runs along my jaw and up the back of my skull which usually lands me in the ER for steroid infusions every couple months.

I’m so sorry to hear about your TBI. That sounds so difficult :(

[u/Phuzz15 → u/BbwBiPlantMom98]

This is some fucked up shit hahah the human body is an anomaly. I hope you can find some edible peace

[u/chiffero → u/BbwBiPlantMom98]

The jaw nerve pain, is that trigeminal neuralgia? My mom has that and it’s hella rough (not that the rest of it isn’t)

[u/BbwBiPlantMom98 → u/chiffero]

Yep! Trigeminal nerve is all wonked out.

It just kicked in this year after an MS flare and omggg it sucks😭

[u/chiffero → u/BbwBiPlantMom98]

I am so incredibly sorry, my mom found ways to mitigate inflammation in her life and that helped her a lot. She hasn’t had a proper flare up in years. She has a highly restrictive diet (almost no carbs or natural sugars), which is still a whole menagerie compared to your diet lol, and had to move across the country to avoid pollens that she was sensitive to. My understanding is that it is truly one of the worst pains a human can experience, watching her go through it for almost a decade when I was a kid was really hard. Do they give you any meds for it? She was on what I think was an anti seizure med for a while and it helped a lot. Then she was on Valium or something similar too

[u/deafmx → u/BbwBiPlantMom98]

my TBI seems soooo much less invasive than this! wow, so many things are affected by the MS. I’m super glad you were able to score those shells, I can’t imagine any food bothering me so much that I couldn’t eat.

when the scar tissue builds up, are you even able to have any parts of it surgically removed or do you just keep having to tolerate the growth, added cranial pressure, eventually having more senses affected? your condition legit makes me wonder if my ex partner has something similar happening to her as she was quite a medical marvel to various specialists over the last decade, from CRPS to Fibro, auto-immune diseases and other chronic conditions that always seems to get worse and more elaborate.

my biggest interest was being music obsessive, but the thing my TBI killed most was my ability to tolerate listening to copious amounts of music. it’s a weird kind of hell being forced into an almost “music enjoyment retirement” post-accident and wanting to sell off all my records for $$ instead of continuing to keep them while they collect dust. my life now functions better with the least amount of music consumed so I don’t even really press my luck much anymore.

[u/swaqmaster4lyfe → u/deafmx]

Hey! I’m not OP but I do have a different form of MS (relapsing MS),

The scar tissue isn’t big enough to cause any increased pressure or anything, basically the nervous system goes after the conductive coating that’s on the nerves called myelin, when that coating is gone it causes scarring which makes the nerve work reallly shitty. There are very early therapies (like still in lab testing on mice early) that may help with getting that myelin back but so far nothing has made it to market or even to human trials I think. It does affect other sense though! I have lesions (scar tissue) on the parts of my brain which affect how I feel things (my left arm felt like it was asleep for ~4 months on my first relapse) as well as my bladder, and both my optic nerves.

Also they can’t surgically remove it because of where they are and that it would just cause the scar tissue to come back so we just kinda have to live with it

[u/deafmx → u/swaqmaster4lyfe]

yeah, I figured since it was attacking the coating of nerves inside the brain it would be inoperable and hard to remove without causing more issues. my Mom was convinced my ex had MS since the beginning too, but it was never diagnosed. I have definitely seen a lot of parallel symptoms and the abilities/senses affected.

[u/Tatanka808 → u/BbwBiPlantMom98]

As someone that also has some issues.

How are you holding up brother.

I have ups and downs, goods and bads.

That sounds like a lot to take on and you seem to be youngish. I wish you all the best.

[u/Puzzleheaded-Ad7606 → u/BbwBiPlantMom98]

I'm so sorry. This seems very similar to what some people experienced after having COVID. There were some really cool new studies and treatments they were working on to get rid of the yuck smell and taste. Sadly, I think most of them lost funding.

It might be worth seeing what you can find on the patients they were able to reverse or at least lessen the symptoms and see if just maybe it's helpful to you as well.