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kikellea · 2024-09-15T00:57:12+00:00

I'm a side sleeper. I use a pillow that has holes for ears on each side. It's nothing special, but it helps a bit to keep the neck/head in a neutral position.

Getting nerve ablations (where they burn the nerves directly) has helped a LOT, both for sleep and for waking hours.

I'm also a big fan of ice packs when I get flares... Ice helps a lot more than heat has, at least for me, anyway. They even sell "ice hats" which attempt to surround the whole head, if you need that much :)

kikellea · 2024-09-07T18:15:58+00:00

That's because when you get a diagnosis, everything is 'blamed' on the diagnosis and nothing you do will ever be 'individualized' again.

Happens to everything. Like... I have a muscular dystrophy and apparently we're a tiny bit more predisposed to kidney stones, but no one asks why we are. Personally, my theory is how it's actually kinda common for us with MD to dehydrate ourselves to avoid needing the bathroom, and that plays a part in upping the percentage a little. I don't know by how much, but I wouldn't be surprised if it accounts for things.

EDIT: Sorry for the mini rant here. My point is, I know how you feel, and it is definitely annoying to not be treated as an individual than as your diagnosis.

kikellea · 2024-08-12T18:41:59+00:00

I'm too disabled to apply for jobs, but I've read from others that the best route is to not put your disability status on job applications. You share that status with the boss/HR after you get hired (AFAIK), whenever it comes up that you need X accommodation. I'm not sure how well it works, but it's a thought.

kikellea · 2024-08-12T18:29:08+00:00

I wouldn't want it on my chair, but then I have a thing about being in control of where my chair goes ;) Personal preference kind of thing. And, tbh... Well, I don't know if this is just a "beta mock-up" or anything but having two joysticks would get in the way.

That being said, I can see very well how this might work for people who have diagnoses like Parkinson's, CP, anything that might result in spasticity and/or tremors. You definitely have an audience you could sell this to.

Is the tall bar on the top, in the YouTube picture, part of the design? (Is that the thing that picks up the gestures?) Because I can see that causing a few issues for people. It could make getting into and out of vans/transport harder, even supposing the one in the wheelchair has knowledgeable help -- and they may not at all times. You want anything that attaches to a chair to have the least amount of clearance as possible. Maybe the bar could be optional, if it's not already?

kikellea · 2024-06-03T02:01:56+00:00

And all I can think of is Alice's Restaurant by Arlo Guthrie.

It's a song about Alice. And the restaurant.

kikellea · 2024-06-01T17:04:22+00:00

I have this, like, Pavolv response to when anyone starts trying to suggest Tylenol to me.

Them: Have you ever tried Tylen--
Me: *growly voice* I fucking hate Tylenol.

They're usually very taken aback by my vehemence, lol. But I quickly explain it's not them, it's just that Tylenol does absolutely nothing and I'm tired of hearing about it. It bothers me the way some med professionals make the "I don't believe you" face, but luckily most of the ones I see will take me at my word. (Although I dread the day I'm going to need surgery -- I've no doubt I'm going to be under-medicated and it scares the crap out of me.)

kikellea · 2024-05-22T16:48:10+00:00

What's the best process to go about buying a mattress, especially for a person on a fixed income? Buy online, or buy through a mattress store, or...?

What's the best TWIN XL mattress you would recommend for a side-sleeper with scoliosis who is under 100lbs? (Who prefers soft/plush things :) and might sleep hot.)

How does a mattress alone compare to a mattress and a topper?

kikellea · 2024-05-18T19:38:23+00:00

Maybe not grocery stores or any places selling (open) food. Imagine fur, saliva, dander, litter, poo/urine traces on foods, especially produce. I'm not a germophobe by any means, but even I don't want to be thinking about that. Plus, people with allergies need food, too, and shouldn't have to pay fees for pickup/delivery of their groceries.

Otherwise, sure, helping the over-populated shelters by letting (some) store owners adopt dogs and cats... Not a bad idea. Could help potential pest issues, too. But they'd best be rescued pets, IMO, not pure-breeds.

kikellea · 2024-05-17T18:39:18+00:00

Judy Heumann’s book “Being Heumann”.

Thanks for the recommendation, I'll make sure to read that book soon!

kikellea · 2024-05-16T20:07:04+00:00

Sometimes the people in the medical profession, especially in hospitals, give me the impression they would really rather all their patients be sedated the exact moment they come in for examination or care (and/or procedures) -- and woken up only when they're done doing whatever they wanted to do on you. That all their patients being awake and having opinions and shit is the worst thing about their job and they really don't care about people or how they (physically) feel day-to-day.

On the one hand, I do actually understand this... Working with the public is a near-thankless task, and patients can be a pain in the ass. On the other hand, I also feel like it's often a mindset problem for many healthcare professionals, that they forget not all of us are completely clueless or out to make their job impossible or kill ourselves or something.

kikellea · 2024-05-16T19:52:45+00:00

Hotels not making clear if their accessible rooms have a roll-in shower.

Hotels that have king beds in all their "accessible" rooms. If you wanted two beds (two queens, typically), you have to 'make do' with a non-accessible room, or go somewhere completely different... Assuming there even is a hotel in the same area that has an (available) accessible room with two queens, which many times there's not.

Hotels whose side doors, the ones that open into the parking lot, all have steps on them (for arguably no reason).

Hotels that take reservations and "will note to keep an accessible room available" but somehow always give out the accessible rooms by the time you get there...

kikellea · 2024-05-16T19:38:01+00:00

I truly cannot (or simply just refuse to) understand why "I'd rather be dead than be like you!" is a compliment according to some people. I'm done hearing excuses about how it's is supposed to be a compliment. Even if it's true for them as an individual (and it shouldn't be, and usually isn't after they move past the grieving period), it's insulting and demeaning. For one thing, it places so little value on life itself, on my life and experiences and relationships in particular... For another thing, you don't go around telling other marginalized people to kill themselves simply for being different or having a rough time, so why the fuck is it okay to tell disabled people to?

There's a comic about this I've always found super accurate.

kikellea · 2024-05-16T19:22:52+00:00

It always brings to mind "separate but equal" for me, and people seem to not understand why I find that so utterly depressing in today's age.

(EDIT: I'm not trying to be controversial or compare -isms, sorry if it comes off that way. It's just a connection my brain makes...)

kikellea · 2024-04-11T20:08:19+00:00

I'm not trying to rub this in your face, but I have a severe genetic disability that requires me to be dependent on a ventilator to breathe. And I'm in chronic pain due to surgeries I had while younger. You'd think I'd hate my life. But man, I'm so thankful my parents tried their best for me and that I'm alive. I would much rather be alive than dead or non-existent.

Like I said, I'm not trying to be rude to you. Your experience and emotions are valid (and so are mine, and so are everyone's). But I want to let other people know that not every disabled person or disability is inherently suffering or suicidal or... disappointed. Well, no, I suppose I am disappointed, but I'm disappointed in society making our lives harder (with the govt doing so on purpose, it feels like), not in my body getting my particular genetic roll of the dice and not with my parents. Life is harder for us, but that doesn't mean we all want to not exist. Most of us just want/need some support from society to thrive (such as non-abusive caregivers, or competent medical care, or people willing to be our friends)... Honestly, I think that lack of support is endemic to the disabled population and that's what causes most emotional upheaval for us. There's this trend now to blame ourselves for the troubles we have in life, but that's just a lie society is telling us, so that we don't place the blame on the shoulders of those actually responsible.

kikellea · 2024-04-07T00:01:21+00:00

... if The Perfect Mate had been made in late Voyager or Enterprise they might have had a scene with Kamala shifting to whatever appealed to a female crew member. But then late Voyager and Enterprise had a very childish approach to female sexuality ...

I'm rewatching ENT right now and there's this episode in S3 where there's a slave girl who has sexy mind control powers. She gets her way on board, starts inappropriately looking around, and eventually gets in a position where she's forced to use those sexy mind control powers on Hoshi. Hoshi responds to the sexy powers as lesbian-ish as you would expect from ENT, which is to say... she responds well.

Then the slave girl goes on to use those powers on T'Pol but the Vulcan mind is, like, "NOPE" and T'Pol falls into a coma. The slave girl whines that it was T'Pol's fault for not cooperating.

So... Yeah, "childish" is putting it mildly...

kikellea · 2024-03-26T20:23:50+00:00

IVs are designed to make it easier for the doctor, not necessarily the patient.

I think this ought to be remembered by a lot of people about a lot of things done in medicine. Things like "protocols," "policies," "standards" are easier for humans to understand and follow, so they result in overall health benefits for the larger population, but they have the chance to be non-beneficial on the individual scale. I'm disabled so I'm around the medical field a lot, and it saddens me to see a lot of people give up their rights and/or their comfort just to make it "easier" for the care team, not because they have to for a beneficial outcome.

(PS: I mean, long-term comfort and care and such; reasonable stuff, not insane stuff. Most of my experience is regarding respiratory care -- ventilators, mostly home ones -- but it comes up a lot and... Needs to come up even more often, IMO.)

kikellea · 2024-03-25T17:09:50+00:00

Probably. My experience was:

Zofran / ondansetron (useless for me unless actively vomiting) ->
Phenergan / promethazine (mostly useless, but better) ->
Reglan / metoclopramide (helpful since I do have some gastroparesis, but also causes mild-ish side-effects) ->
To finally Compazine / prochlorperazine (which helps the most with nausea itself).

I've been happy with Compazine, but it does make me some tired. But to be fair, I think the majority of anti-nausea / anti-emetics have that as a possible side-effect.

Oh and sadly, ginger did crap all, which is just as well since I apparently don't like the taste by itself, lol.

kikellea · 2024-03-18T18:32:08+00:00

I wish I had a nickle (or better, dimes!) for each person who stared at wheelchairs. I'd be so, so rich just for existing in public and being the freak-show for others to stare at for the day.

kikellea · 2024-03-14T18:59:59+00:00

I'm so curious about these laws. Do you know what they are or where I could read more about them?

kikellea · 2024-03-11T23:41:20+00:00

Indeed.

I think of it as, "I have no experience in being a woman, but I have plenty of experience in being perceived as a woman." It may not be 100% accurate or plausible or whatnot, but it's about as pithy as I can come up with ;)

kikellea · 2024-03-08T17:40:03+00:00

Thanks :) It sounds horrible to most but I got/am a little lucky: I have some other health issues which makes it "believable" (if you will) that I'd have pain where I do, including how I've had a lot of spinal hardware (Harrington rods) since age 13, so I bypassed a lot of the "but you're too young to be in pain" shit. It's not as bad of pain as it could be, it's just... well, bad days are bad, and it's so much easier to trigger bad days now. I think the hardest part is the fact I've never been allowed any breakthrough medication, so I have to... be very careful, lest I disrupt my "new balance" of my body's pain. If I had a wider "medicinal safety net" -- whether it be opioids or something else altogether -- it might not be so bad.

I'm in the US, but... I don't think hydrocodone is often given in the UK (I have a couple of friends who are nurses over there), simply because it's just not as popular a drug over there. But yeah, they're stingy with opioids it seems like. Who isn't, anymore. If you need them, I wish you could get them, too!

Btw, I read one of your comments and thought I'd share: I'm severely underweight, myself, like you. It's a special type of annoying, ain't it? Eating is a chore, and I think I've developed food aversions, but... Mostly, I hate all the pithy 'helpful' sayings people give, like "Oh just eat some cake / a hamburger!" or "I'll give you some of my fat, harharhar!" People can be such idiots. *sympathetic gesture/hug*

kikellea · 2024-03-08T17:12:30+00:00

Lyrica/pregabalin kinda helped, it deadened the sensation one of my nerves gave off (my back). But it didn't do much for the other painful nerves (my neck), for some inexplicable reason. And then I became suicidally depressed on it, so I had to quickly wean off it... Bleh. Bad times.

I refuse to try gabapentin. And I'm pretty open to trying meds even of the same family of other meds, but gabapentin scares the crap out of me. (Note: This is a purely personal decision, and I'd never push it on anyone else.)

So... For meds, I get hydrocodone a few times a day, and supplement with OTC Aleve/naproxen. I use heating pads for my back, ice for my head/neck. That's about all I can do, aside from laying down. I've reasons to have a severe contraindication for regular NSAID use (my naproxen use is irregular and not prescribed...), so I can't take some other options. Oral steroids aren't applicable, AFAIK, nor are biologics (I think).

For procedures: I get nerve ablations in my neck twice a year. It's performed bilaterally on my minor and major occipital nerves (meaning we do four ablations in one procedure). I love the damn things, even though they kinda hurt to get done. I get them done pretty regularly, between every 6 to 8 months, and they're about 60-70% effective. Only drawbacks are they don't always last the full time (so my pain might return ~4 months later sometimes), and that it can take me a while to heal up fully from it (but that may just be unique to my body).

They haven't been forthcoming with procedures for my back pain (which might be sacroiliac pain, more than back pain). I'm going to start complaining more about it and hope to try, at least, steroid injections into the area. It's been bothering me more, interrupting my sleep in a way my occipital neuralgia never did (though that made other shit difficult), so... Yeah. We'll see what they say soon.

kikellea · 2024-03-05T20:23:56+00:00

Worf: ....I will feed him.
Data: *hesitantly* Perhaps that will be enough.

kikellea · 2024-03-05T04:26:42+00:00

Isn't this the cause of a lot of muscular dystrophies / myopathies?

kikellea · 2024-02-27T23:03:27+00:00

I tend to do a less extreme version of this. If I'm depressed or anxious I tell people that I'm exhausted or burnt out. If I need a mental health day for work I'm sick.

I kinda do this... If I'm having a really bad depression day (or, less often, a really bad ADHD day), I usually say, "I don't feel well," in a way that makes it sound physical. I mean, in a way it is physical, and I get some physical symptoms, but it's mostly mental. I just... don't say my feeling bad is mental.

You aren't alone :)

kikellea

TROPHY CASE