[ SECRET POST #3421 ]

[case]

⌈ Secret Post #3421 ⌋

Warning: Some secrets are NOT worksafe and may contain SPOILERS.

01.


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02.
[Selena Gomez/Orlando Bloom]


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03.
[Fullmetal Alchemist]


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04.
[Vocaloid, Hatsune Miku]


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05.
[The Great British Bake Off]


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06.
[Anne of Green Gables/Anne of Avonlea]


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07.
[Pokémon Sun and Moon]


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08.
[iZombie]


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09.
[Etrian Odyssey]
















Notes:

Secrets Left to Post: 02 pages, 042 secrets from Secret Submission Post #489.
Secrets Not Posted: [ 0 - broken links ], [ 0 - not!secrets ], [ 0 - not!fandom ], [ 0 - too big ], [ 0 - repeat ].
Current Secret Submissions Post: here.
Suggestions, comments, and concerns should go here.

Comments

Disability/chronic illness talk

[belladonna_took]

Everyone is welcome to ask questions/share their own experiences (positive or negative). I know there's a fair number of us here but don't feel pressured to participate if you don't want to. :)

Since there have been a couple of secrets about how uncomfortable this makes some people recently, I thought maybe I'd offer my own experience on the subject if people had any questions. Obviously I'm not an expert, but I'm not easily offended at all. It's May so it's awareness for EDS month too.

If your own response needs a trigger warning I guess wait for things to collapse a bit? I'm not great at dreamwidth.

Re: Disability/chronic illness talk

[sarillia]

I hate how embarrassed I feel every time I take an elevator up or down just one floor. On good days it's hard to tell that there's anything wrong with my legs when I'm just walking so I worry about the people who think I'm being lazy instead of trying to avoid unnecessary strain on my knees. I've gotten comments before.

Re: Disability/chronic illness talk

[(Anonymous)]

I'm sorry. :( One time I was in the elevator at school, and a professor actually said "young people on the elevator. I don't believe it." Before walking off. It made me feel really awkward.

Re: Disability/chronic illness talk

[(Anonymous)]

I had a similar situation when I was first diagnosed with epilepsy. I always took the bus everywhere and my dad was fine with that, but he did tell me to 'make sure you get a seat, dammit, I don't care how old or pregnant those other people are'. I obeyed, because the idea of a seizure on a moving bus freaked me out but it did lead to some awkward moments. I haven't had any problems in years, so these days I get up when I have to, but it has made me less likely to judge people who don't. You simply never know what their life is like.

Re: Disability/chronic illness talk

[herpymcderp]

Man, I really dislike how most people aren't aware that it's even possible to have a "good" day when you're chronically ill.

Like, there's the assumption that if you're disabled you should always have the same level of ability or you're not actually disabled.

Re: Disability/chronic illness talk

[cure_light]

Wow, you should definitely tell people who make comments about it to fuck off. Or at least, think it at them really hard. They're being ridiculous. Who cares whether or not someone takes the elevator?

Re: Disability/chronic illness talk

[belladonna_took]

That sucks! I used to take a lot of breaks and shortcuts before I got my wheelchair. The judgement usually comes from older people who are like "if I can use the stairs..." or "if I were your age..."
Lazy is a shitty thing to call someone when you don't know their situation.

Re: Disability/chronic illness talk

[herpymcderp]

My own experiences are thankfully largely in the past as far as being in chronic pain and having limited mobility goes. I'm pretty grateful for that.

However, despite that I still have issues with regard to the amount of energy I can summon up at any given moment and what tends to happen if I actually get sick with a bacterial or viral infection. Apparently this doesn't actually "count" (according to shitheads) so I usually avoid talking about what I've been through.

I will say that probably ...ten or so years of my life were eaten up by UC and PSC, in total.

Re: Disability/chronic illness talk

[belladonna_took]

Ugh. It totally counts! Fatigue is a bag of dicks. Not the fun kind.

Ten years is a long fucking time, dude. You're a badass.

Re: Disability/chronic illness talk

[(Anonymous)]

I hated how the nurse at the college I went to decided that because I was young that I can't have arthritis, that my back hadn't flared up to the point that I needed ice just to make the ache die down a bit, and promptly called the therapist after I had gone back to my dorm, who then called me to set up an appointment and tried to convince me that my arthritis was really a psychosomatic response to being fucking homesick!

I ended up calling my mother in tears because of that utter bullshit. Ended up printing out everything there was on the type of arthritis I had, took it to the therapist and gave it to her before turning on my heel and heading back to my dorm.

/still bitter

Re: Disability/chronic illness talk

[sarillia]

I'm so sorry. I have arthritis too (thanks to dislocating my knees so often because of other joint problems). Mostly when I get those kinds of comments it's a joke though. But still frustrating. I can't imagine how much worse it would be for it to be serious.

Re: Disability/chronic illness talk

[herpymcderp]

I'm forever astounded that this behaviour seems to happen with nurses in the USA fairly often. I would have had trouble believing it at first, but I've heard of it from my American friends so many times (one involving a nurse deciding someone was "faking" an allergic reaction that lead to pleural effusion!) that ...holy fuck, there's something goddamn wrong with that system.

Sorry you had to go through that.

Re: Disability/chronic illness talk

[belladonna_took]

:( That is bullshit! I'm sorry you had to deal with that.

It really sucks when you have to educate the people who are supposed to be looking after you. I like people who straight up admit they have no knowledge about something but still want to know what they can do to help. That's usually the best case scenario for me.

Re: Disability/chronic illness talk

[(Anonymous)]

https://66.media.tumblr.com/2bafe09654d660a0267f2712a1d71a8f/tumblr_o76bkyroEz1s514nio1_500.png

No. Please dear GOD no. We already have enough of a hard time dealing with people who think we're all wannabes and fakes or lying because of people on tumblr. This cannot be anything good if it catches on and I hope and pray it doesn't.

Just quit with the cutesifying of actual conditions and saying ridiculous shit like "my autism is candy apple red and studded with gemstones." Bedazzle your jeans or your sweater if you want to so bad, not your medical condition.

It's. A. Fucking. Neurological Condition. Not a goddamn t-shirt

Re: Disability/chronic illness talk

[kamino_neko]

I've got respiratory issues. Asthma, an inexplicable tendency toward lung infections.

It's unpleasant, but doubly so when I visit the doctor about one of those infections, and am told just to use my inhalers more often. Like...I'm not good about getting to the doctor...by the time I decide it's a problem that's not going to pass, so I should see a doctor, I'm already using my Ventolin at least twice as much as the maximum. And it's even more annoying when I get this without even listening to my chest.

Bonus 'please, why aren't you listening to me?' moment - back in February, I was in the ER for what turned out to be flu-induced pneumonia. The Respiratory Therapist kept insisting I could blow harder when she was doing the flow meter. No, no I really could not.

Re: Disability/chronic illness talk

[philstar22]

I've been dealing with chronic pain during periods for a few years now (hopefully it should be getting better now). And what bothers me is how some people, including some doctors, dismiss it as "just cramps." I get told sometimes that I just need to get over it and deal with it when I'm in so much pain I can't get out of bed. I've lied before about why I'm staying home because I knew if I said why I actually needed the day off I wouldn't be allowed to. It got really frustrating.

Re: Disability/chronic illness talk

[(Anonymous)]

I'm taking prednisone for a flareup and it feels like the side effects are different every time I take it (once in two years, so not that often, luckily). The last time I felt like an energizer bunny and this time I'm just tired. What's up with that?

Re: Disability/chronic illness talk

[mrs_don_draper]

I deal with a cocktail of mental illnesses that drain my energy in varied and different ways every day. If it's not a depressive episode, it's anxiety. If it's not PTSD, it's an attack. If it's not sensory overload, it's head aches or stomach aches. I wish people understood that I don't have a ton of control over when, where, and how mental illness complications manifest. I hate the idea that I should "be over [thing] by now" or I should "know how to control [thing] by now." It's really hard being a "normal" person and putting on a "normal" facade every single day.

Re: Disability/chronic illness talk

[(Anonymous)]

I have crohn's disease, interstitial cystitis, depression, and vitamin D deficiency. Along with those issues, there is lots of pain and fatigue. Sometimes I can't make it to work, but my boss is pretty understanding. I think he realizes that I could pass out or shit myself in front of people. The real problem is that I rarely feel well enough to go do fun stuff with my friends. I haven't been able to join in with going to concerts or just going to a restaurant and hanging out. So it's kind of lonely when I just have to sit here with my stupid body. My doctors are all working together to find a regimen that will help, but it takes time to find the right dosage of drugs and I'm trying to work out an eating plan that works for me. The IC is really effected by diet, even more than the crohn's. I'm trying to cut out any food that has preservatives or lots of artificial ingredients. That's helped.

Crohn's and hidradenitis (TMI)

[feotakahari]

My immune system attacks healthy tissue in both my intestines and my apocrine sweat glands. The former is managed medically: once every two months, I go into the hospital and get my veins pumped full of infliximab. There aren't a lot of hospitals that can provide infliximab, so this limits where I can live and work--I can't pack up and go to some small town in the middle of nowhere, unless I want to travel back every two months to get poked again.

The latter is less dangerous, but much harder to manage. Sweating makes it worse, but I can't refuse to do every single task that will make me sweat. I've grown quite used to pain around my sweat glands, and I've become an expert at cleaning blood and pus out of my shirts.

My mother once told me not to hate my body, because it's the only one I have. But there are times I wish I could trade it in for a new model.

Re: Disability/chronic illness talk

[cakemage]

I have multiple chronic illnesses and disabilities, such as bipolar depression, autism, anxiety, fibromyalgia and psoriatic arthritis. Before my hysterectomy, I also had endometriosis and poly-cystic ovarian syndrome. I'm just going to focus on the arthritis and my experiences in getting diagnosed, though. Warning, lots of profanity ahead.

So it took my (ex)primary care doctor eight months to diagnose me with arthritis even though I had all the symptoms. Two of those months were spent convincing him that the intense pain primarily in my left hip was, in fact, real. Then the dumb fucker sent me for a nerve-conduction study (which was almost as painful as getting kicked in the head by a horse, by the way) before he even called for x-rays. Hell, he never got x-rays, he just sent me for an MRI when an x-ray would've shown the same goddamn thing for a lot less money! He also told me that if I kept using my cane I'd end up in a wheelchair by the time I was 30 (I was 24 at the time). Well, now I'm 30 and I'm still using the cane and I'm not in a wheelchair, so fuck you on that one too, Dr. D.

By contrast, when I saw my current rheumatologist for the first time, she not only believed me immediately when I told her about my pain, she sent me for x-rays straight away and found that I also had arthritis in my hands, feet and knees as well as my left hip. What's more, within two sessions she figured out that it's specifically psoriatic arthritis, got me on meds that actually help, and then referred me to my equally marvelous pain doctor. So, somewhat happy ending, there. It's so nice to have doctors who believe my pain is real and who don't treat me like I'm just some lazy drug-seeker like Dr. D did.

Re: Disability/chronic illness talk

[(Anonymous)]

I've got a chronic pain thing going on and it just keeps getting worse. Last time I mentioned it to my doctor he sort of chuckled and told me it was probably the air conditioning. I don't know what's wrong with me but it's obvious *something* is. Some days I can hardly walk. He won't even do any tests, he just says to take Aleve. I'm planning on going to a different doctor soon, but I'm worried it'll just be the same situation.

Re: Disability/chronic illness talk

[ginainthekingsroad]

I have early-onset (around 9 for me) torsion dystonia, which is one of the Jewish-related hereditary diseases. I manage fairly well with medication and PT, to the point where my disability is considered "invisible." I think my most consistent complaint these days is that my medication gives me bad dry mouth so I'm carrying water bottles everywhere and it's a struggle to find a good purse-size water bottle that's not very heavy because a heavy bag aggravates my neck/shoulder and makes my tic worse. It's also generally affected by my health, and stress... which is fun when I also have GAD.

Re: Disability/chronic illness talk

[lb_lee]

Enh, everyone on this site likely knows what we got. :p

We have episodes every week, where we are bombarded by memories and regurgitated emotions or physical sensations of the rapes we sustained from the ages of five to nineteen. (These range in severity to ordinary sexual assault, to rapes with beatings, to chokings.) Sometimes these episodes will hit in public, where I just start shaking, rocking, and mumbling on public transit. (Because it's that or start flailing and screaming, and why bother the nice people on the train, you know?)

We can not make these episodes stop. If we try, they will just erupt at even worse moments. We can be victims or volunteers, and we have chosen to be volunteers.

All of this has been happening for coming up on two years now, and we will probably be doing this for a very long time yet. One day, it will be over.

But the worst part is the constant uncertainty over whether these memories are even true. We don't know. We have no way of proving them, except checking our records and trying to compare what little we know. So for all I know, we're just having these massive horrorshows in our head FOR ABSOLUTELY NO PURPOSE WHATSOEVER.

And then you have all the social services bullshit. I won't even get into that.

This week I've been dealing with memories telling me my mother knew I was being assaulted by other family members, and dealt with it by trying to kill me. I never thought I'd find myself saying, "why couldn't it just be rape?" but here we are.

--Rogan

Re: Disability/chronic illness talk

[dancingmouse]

Tourettes, ADHD, Depression, and Anxiety.

No, Tourettes doesn't cause you to swear all the time (it could be a symptom, but a relatively rare one) and no it's not cool to have it, especially if you have motor tics that irritate/hurt your muscles and joints. Also, sorry not sorry about you being annoyed at my random squeaks and twitches. Trust me, I'm more annoyed at them than you are. Also, you, Tourettes doesn't effect intellectual capabilities, so quit with the baby talk, all right?

Yes, ADHD is real, and it causes me to have the attention span of a flea (sometimes) and makes me hyper at random times of the day. Sorry if you can't quite grasp that.

Depression and Anxiety? Yes, I do take medication for it, but sometimes I start acting strange (like if my anxiety causes me to get dizzy or freak out) or I'm REALLY tired and can barely move around. It's NOT drug related (at least, not the kind of drugs YOU'RE thinking about) so stop asking me of I have a "problem" and if I need help.