#spoonie stuff

[chronically-izzzzle]

[my-brain-is-soup]

[plague-of-insomnia]

Feb 29 is Rare Disease Day

[Via rarediseaseday.org*]

Today, on the “rarest” of days felt like a good time to spread awareness.

My disease hasn’t even been fully identified yet. But even if your disease has a name and is established in the literature, getting a diagnosis and treatment can be difficult. Getting respect from medical professionals may be even harder.

*I think they’re being slammed with traffic today so you may not be able to get into the site right away

[sprinkleofquirk]

I’m so tired of being honest about my pain level and having no one believe me because I don’t show pain the way they expect

[zhooniyaa-waagosh]

You can really tell who has and hasn't dealt with regular migraines by how they react when you mention self-medicating with soda.

[mamaangiwine]

If you're like me, there are going to be days when the gods feel quiet and small in your life- maybe even fictional or a figment of your imagination. There are going to be days where you don't have time for prayer or practice; and even if you do? Your words will lack their usual weight, and any ritual will feel as directionless as a spinning compass.

There will be days where you seek out your ancestors; and know that they are in your blood, and know that they are in your laughter, your smile, or even in the way you cry- and it won't be enough. Despite all this proof that they are with you, it will not enough proof that they are listening.

There will be days when you feel like a child in their master's robes which, in some ways, is worse than a fraud- because a fraud has a goal, because a fraud knows that when he hands you a cure its snake oil, and at least thats something to be confident in. There will be days when you felt like you were finally attacking the iceberg with a pick axe, readying yourself for the bits beneath the surface; only to realize this whole time you've been on all fours scratching at snow, and now your fingers are bleeding.

If you're like me, the mundanity of life outside your books, your candles, and your burning frankincense may wrap you in its arms and place a cold weight on your shoulders, and when you say "Hey, is this, you know, it? Is this all?" It will whisper back: "Yes, of course, what else should there be?"

Yeah- that?

All that?

That's part of it.

This is what I mean when I say that commiting yourself to the path of a practicioner is not only to declare yourself as one 'who knows', but also as one who is always learning- and part of that is learning to sometimes live with this feeling and take what we can from it. Sometimes it is learning to recognize when we are wrestling with angels.

[smoking-witch]

I know the awefull feeling of chronic illness ruining stuff

Welcome to the club, here's your heated blanket and surprise bill 🤪 fr tho I'm so sry you've been thru that. It really does bite.

[unfilteredrealities]

Had a panic attack and a meltdown the second I arrived home today from work. All my muscles tensed up so badly that after they released a while later I fell asleep but when I woke up my lower back was hurting again and my subconscious stress is back…

I’m crying on and off since I’m awake. I managed to eat something but it was very hectic and chaotic.

Rn I want to just not exist for a bit or at least step out of my meat flesh suit and not feel the chronic illness the chronic pain rn because it’s fucking me up.

[feral-space-faerie]

this discourse between whether knitting or crochet is better/faster/etc. is BULLSHIT. Which is easier bc of counting more or less is BULLSHIT.

The only differences that truly matter are: Crochet hurts my carpal tunnel and Knitting hurts my arthritis and that's how I choose per project.

[infernal-collective]

Spending a few 7 hours sitting criss cross on our bed, despite our chronic pain and leg cramps saying otha wise.

-💖

[girlwithsword]

Medical professionals HATE her!! Her medical history is long and complicated!! Plus she asks follow up questions!!!

[chronically-izzzzle]

[my-brain-is-soup]

They want to remind you!!

[plague-of-insomnia]

it would be really nice if pharmacies could do their fucking job and NOTIFY when they have to cancel an order

[sunshine-and-sprinkles]

Healthcare professionals always say they want a detailed patient history, but when the patient gives them that history instead of another medical professional they’re like ‘hmm that’s suspicious’

[zhooniyaa-waagosh]

It's been a really bad arthritis day today. I've been struggling to open any bags and bottles. My fingers keep twitching. I have to hold my mug around the body with both hands because curling my fingers around the handle hurts too much. Even the weight of my phone is putting strain on my wrist.

I'm learning to drive, but will I even have enough grip strength to hold onto the wheel in a couple years? I don't know.

I can very rapidly feel my joints and mobility and fine motor skills declining and I'm. Scared. I'm really fucking scared. It was hard for me to understand what having rheumatoid arthritis really meant when I first accepted I had it but it's starting to finally click and I'm scared for my future. I know people manage just fine with RA but I'm only 26 and it's already so bad and I don't have health insurance or medication and I'm too broke to afford the accessibility items that could lessen the strain and. It's just scary, okay?