a-rare-askblog

[a-rare-askblog]

It feels weird that some of the only resources I ever see about my disease are materials for medical students to study. Like, yes, it's important that they've heard of my condition, but it creates this weird complex where you just feel like your experiences are just a couple passing words. Something they might regurgitate on a test then forget about. How much, then, is it really understanding the reality and the weight of what you went through? What it really means to endure something so brutal? Maybe I don't get it. I'm not studying medicine, I don't know how invested the average student or professor is in the humanity of what they study. But I have a feeling that a lot of people like me, with rare diseases that are generally unknown to the wider population, find themselves in this situation. Hopefully this finds someone who resonates.

[a-rare-askblog]

Depression is super weird. Like one moment you'll be unable to move, stuck doomscrolling, feeling like shit cause the person who was keeping you from feeling alone isn't there anymore. Then you'll suddenly have actual Energy and get up and suddenly I made vegan cookies??? Turns out having stomach issues made worse by lactose and thinking that eggs are too expensive and annoying to deal with makes you just want to bake vegan desserts. Thanks vegans for making dairy-free and egg-free recipes popular!!!✨️

Oh, the things I'll do to fight off bad brain chemicals.

[a-rare-askblog]

this is fire asf thank you 🔥🔥🔥 [not hard to figure out that the ask was from me so I figure I'd just admit it lol]

Hi!! I saw your post on the disability community about disabled cats designs and wanted to come in with a couple suggestions. Cushing's Syndrome, Addison's Disease, IIH (Idiopathic Intracranial Hypertension), and Still's Disease are all rare disorders/diseases I've either heard about or had in some form. These are all just suggestions of course, but I think it's super cool to have representation of unknown disabilities on top of some of the more heard-of conditions :3

In order from first to last we have Cushing's syndrome, Addison's, IIH and Still's disease!

I couldn't find many visible characteristics for the middle two, so i settled on giving the Addison's cat a medical ID bracelet and drawing the IIH cat lying down (since fatigue seems to be a main symptom).

Thanks so much for suggesting these, i hope you like 'em! >:3

[a-rare-askblog]

this is the realest shit I love you for this

Ngl, Visual disturbances are the strangest things to explain to people- like

“I see two of one object, overlapping atop each other - comes and goes, it’s like some photo filter. When I stare at objects for two long I begin to grey out as the colours merge into one - creating a distorted blob. When I stare at the sky I see weird eye floaters that look like mini worms in my eyes. Sometimes I see fragments of darkness for no apparent reason, as if the end of earth is calling…”

*Terrified Employee points at sign franticly* “M’am, this is a Wendy’s..”

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IM GONNA CRY THIS JUST HIT ME LIKE A BASEBALL BAT LMAOOOO

I've made this joke about five thousand times, but goddamn, man.

[a-rare-askblog]

Just found this really useful guide to help anyone here in America with how/if they fit into the ADA and the protections that come with it. Figure it could help people unsure of their status, like I feel sometimes. Helps to know the baseline I figure.

https://adata.org/factsheet/ada-definitions

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I'm deeply sorry this happened to you. Having a disease that affects the whole body is incredibly challenging, and I can't even imagine how infuriating it must be to be in your position. I can't do much, but I figure I would at least spread awareness for your situation by reblogging.

If I die, scatter my body parts in front of all these company's locations

I’m an expert on Still’s Disease, both as a researcher and as someone living with it since childhood. Despite this, I’ve spent the past six months fighting to access the biologic medication that keeps my rare autoinflammatory disease in check. Short of explaining all the ways Still's Disease is terrifying, this medication literally keeps me both stable and alive. After six month of fighting, I still don’t have it. My uncontrolled disease is running rampant. The excess inflammation is worsening the bulging cervical discs I have, causing immense pain on top of endless frustration. Between a self-funded insurance plan through my spouse's employer, the plan's administrator, delays from the pharmacy benefit manager, and a lack of urgency from those with the power to help, I may not receive my medication before traveling to Spain next week for the OMERACT meeting — a meeting focused on improving health outcomes for rheumatology patients. Despite my relentless efforts to navigate the system, I’ve been met with silence, slow responses, shifting responsibility, and even apathy. This never should’ve happened in the first place. I was previously receiving Ilaris from the Novartis patient assistance program. They ended these programs for anyone with private insurance at the end of 2024, leaving countless patients like me without a safety net and in excruciatingly declining physical and emotional health. If someone like me — someone who knows the disease, the system, how to advocate — has this much trouble accessing essential care, I can’t help but wonder how many others are quietly struggling or have been forced to switch back to a medication that was not effective. Despite how people view me as positively stubborn, I've been struggling with feeling forgotten, dismissed, and being too exhausted or in pain to handle all of this. I don’t know what else to do anymore. The hundreds of hours I've spent coordinating between my provider, the PBM, the insurance plan administrators, and even my spouse's HR representative all feel like they've been for nothing. What I do know is that this isn’t right. This system must change, and it has to prioritize people's lives over profits. Patients deserve better. I deserve better — especially when the consequences of not having medication can be fatal. Note: Everything I share here reflects my personal experience and views — not those of my employers, collaborators, or any organizations I am affiliated with. I’m speaking for myself, sharing a deeply real, painful, and ongoing struggle that has taken an immense toll on my health, my hope, and the joy I had for this year.

[a-rare-askblog]

^^^^ 🔥🔥🔥🔥

Hey you, friendly reminder that using spoons on a hobby or something that brings you joy is just as important as doing those chores your brain is beating you up over. I double dip pinky promise.

[a-rare-askblog]

hiya. been going through some weird symptoms that may or may not be something more. I'm gonna see a doctor about it, but i figure the more input I can get from people who might relate to it the better. Maybe it'll help me know what to say or suspect.

(cw gross digestive stuff)

So I don't know exactly how long things have been happening, but about a month ago give or take I started really being bothered by constant diarrhea and general stomach discomfort/fragility. Once a week or so I would be in the bathroom and have that overwhelming sensation of being overheated and sick from trying to go normally. I would eventually be able to go and feel relieved after, but it was unpredictable and so, so awful. I suspected, since I was lactose intolerant as a baby/toddler, that maybe I had redeveloped that. So I started cutting out/minimizing my dairy intake and that did a lot for me. It got rid of that once a week horror and the diarrhea doesn't really happen often. However, I still have problems even with the help.

A few weeks ago my stomach hurt so bad I thought I had terrible pms. I didn't. Even right now I'm not sure if my stomach or back hurts, or both. I guess it's also important to mention that I stopped taking nexium after years (took it for heartburn). I only get heartburn occasionally now, but idk, that could have something to do with it. I don't really know if it's just my medication or a new lactose sensitivity or something else, but things have been super weird and any education or resources would help before I have to potentially deal with a doctor who might not take me seriously.

I hope this made any sense. I just figured maybe someone in these tags might know something I don't or know the right questions to ask, since I'm terrified of incompetent doctors. Yay medical trauma ✨️

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If nothing else, I plan to write a memoir about it. Part of why I set up this ask blog actually - figured i could maybe get an idea on what people wanted to know. But yeah, I'll definitely think on it. Maybe I'll even alter one of my characters in my circus cast I'm making to have the disease.

I can't deny it'd be at least a little funny to do it to the villain.

Very reminiscent of the projecting period cramps onto male characters meme.

Guys, I’m sorry but Adam and Mammon look like they have Cushing Syndrome imo

Here’s helpfull graphic from this site (also read what is it. It’s very interesting disease and not all people know about it)

Adam less, even tho in some shots he looks like he’s supposed to have a bigger belly which makes him look so strange and ugh Mammon slim hands convinced me he probably also has slim arms and legs

[a-rare-askblog]

Only further inspires me to write a character with it. It's hard in fantasy settings though, since it's an invisible disease for the most part. Even the proportions are some people's natural fat distribution. For me it wasn't and that's what started the suspicion that something unique was up. I should at least make an oc with it, that would be cool.

Also, I was gonna correct the terminology between the disease and syndrome, but turns out i was actually kind of remembering it wrong. Turns out anyone with Cushing's is considered to have Cushing's Syndrome, but only people with the most common type/the type I had (caused by an internal benign tumor) are diagnosed with Cushing's Disease. Sounds like your version of Adam would have an even rarer disease than I did! I would say he deserves it but I know full well I would never wish any form of Cushing's on my worst enemy, much less cancer. That's just cruel. Even if he is literally hazbin's Adam.

Guys, I’m sorry but Adam and Mammon look like they have Cushing Syndrome imo

Here’s helpfull graphic from this site (also read what is it. It’s very interesting disease and not all people know about it)

Adam less, even tho in some shots he looks like he’s supposed to have a bigger belly which makes him look so strange and ugh Mammon slim hands convinced me he probably also has slim arms and legs

[a-rare-askblog]

As someone whose depression has been majorly getting in the way of me cooking for myself for MONTHS (even though i really enjoy cooking!), you're the realest for this!!!

(fellas!!! It's FREE!!!)

People with low spoons, someone just recommended this cookbook to me, so I thought I'd pass it on.

I always look at cookbooks for people who have no energy/time to do elaborate meal preparations, and roll my eyes. Like, you want me to stay on my feet for long enough to prepare 15 different ingredients from scratch, and use 5 different pots and pans, when I have chronic fatigue and no dishwasher?

These people seem to get it, though. It's very simple in places. It's basically the cookbook for people who think, 'I'm really bored of those same five low-spoons meals I eat, but I can't think of anything else to cook that won't exhaust me'.

And it's free!

[a-rare-askblog]

okay but this hit last August when I was like "hey can a part time semester count as full time im like crying in the club one month out from brain surgery" and my university was like "nah dawg you won't be recovering forever" like bitch TRY being in my body

disabled enough my fat ass smh

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Here's to all my homies who have/had temporary disabilities. It's hard to know where you are and where you stand. You don't want to step over people who have your problem permanently, but you know there is a place for you somewhere. Even when a disability is temporary, it exists in a moment in time. In that moment, you need help, accessibility, even if it won't matter forever. You can't walk up those stairs, read that picture, hold that pencil, whatever it is. And it matters. And you matter.

~ someone whose cushing's decided to thrust what felt like a million different temporary disabilities onto them last year

[a-rare-askblog]

This is the realest shit in the universe omg. All I've ever had is someone tell me their dog had it LMAO 🙏

i finally got a "cushings i know what that is cause a family member has it" from a co worker. its nice not having to spend 20 minutes explaining how my cortisol levels got wonky for a change considering how rare it is.

[a-rare-askblog]

I know this is meant to be criticism, but honestly I kind of choose to hc this as someone who's gone through the disease and likes the shows. Cushing's doesn't get rep anywhere lmao 🙏

Guys, I’m sorry but Adam and Mammon look like they have Cushing Syndrome imo

Here’s helpfull graphic from this site (also read what is it. It’s very interesting disease and not all people know about it)

Adam less, even tho in some shots he looks like he’s supposed to have a bigger belly which makes him look so strange and ugh Mammon slim hands convinced me he probably also has slim arms and legs

[a-rare-askblog]

Man, remembering that people actually use a disease I had to promote their dropshipping schemes actually grosses me out. Like, babes, you don't need a pill or whatever, you need a DOCTOR and THREE PLUS SURGEONS!!! Probably anyway. If you're anything like me.

Hearing from someone who had the disease too also makes me feel a lot less alone. I wish I had used tumblr in the weeks leading up to my surgery. I felt so alone then. All the rep was from like women in their 40s with families. I am significantly younger and not a woman. But at least I see you now. Thanks :)

Oh you think you’re fat? Actually you have CORTISOL FACE! Yeah buy this useless product on TikTok shop and follow me for more misinformation and general panic about the next made up trend.