It finally happened! Today I got a diagnosis for my pots!! I went to see a new cardiologist almost 2 hours away and he diagnosed me with pots! I'm so happy someone finally heard me and sees my struggles. 🥹 Attached are some photos from my day at the appointment and in the town!
One of the worst things about being young and chronically ill is the fact that nobody takes you seriously
Even doctors, the people who are supposed to help you, don't take you seriously. You try to explain that you're in constant pain, that it hurts to just exist, and they smile and non in a way that tells you they dont believe you.
Hell a doctor I have been seeing for 3 years examined me physically for the FIRST time and was surprised how hyper mobile I was, despite having told her this and the pain it causes every time I've seen her. She was also surprised that I was still having pots symptoms because she just thought it was because I was 'very tall for a girl'.
Finally I thought she might actually take my concerns seriously, that I might finally get help, nope. She discharged me. Told me to go back to my GP if I still have issues.
i hate when i, a completely healthy person (very chronically ill), get sick (flare up) for no reason at all (i exerted myself way past my limit just cuz i didn’t wanna be “annoying”)
Petition to add more disabled magical creatures in fantasy
Like picture a mermaid. When they have to be on land their tail turns to legs, but because their body is used to lower gravity their joints tire easily and are chronically in pain.
Also depending on how deep in the ocean they live, it’s likely they have circulation problems because their body is used to the water pressure holding everything where it needs to be and now their blood is always fucking pooling in their legs and they have to wear compression socks everywhere.
Wheelchair user mermaids. Partially/fully blind mermaids because who needs to see when there’s no light at the bottom of the ocean?
Mermaids with sensory issues who have to wear headphones all the time because sound is so much louder up here on land and they are constantly overstimulated. And also the sun is simply Too Bright™.
Mermaids who have POTS because in the water postural changes make no difference and their bodies don’t know how to stabilize with so much gravity.
I’m really fixated on the mermaids rn but PLEASE feel more than welcome to add more!!!! I wanna hear about disabled dragons
my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.
because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?
they asked me if i was on my period. when i told them no, they asked me if i was pregnant.
when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.
disabled people, in this particular situation disabled afabs, are never fucking listened to.
the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.
so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.
One of the managers at work likes to take and hide peoples stuff as a joke. My manager took my pulse ox when I wasn’t looking. When I noticed it was gone I started to panic. A pulse ox is minimum $30 and I’ve had mine for over 7 years and have named it. So yeah I was panicking. I immediately paged my manager to my register and when he arrived I demanded it back. He did give it back.
I informed him that it was stupid and dangerous of him to take a medical device from someone especially like that.
I made a zine about adjusting cheaper wheelchairs, after adjusting my NHS wheelchair.
Notes: Your wheelchair ‘service manual’ is a good resource for adjustments! You can often google them. Also, with the wheel adjustments, be prepared to move the breaks. Google how to measure for a wheelchair to find your seat width, and if you want to get extra, look at seat depth. Leg length is usually done by adjusting the footplate height.
Image description and printable version under the ‘read more’ .
Image Description:
An 8 page zine. Both images have the same content but the first one is arranged to be read on a computer. I am going to describe each page.
First page reads “A cripple’s guide to.. making a cheap(er) wheelchair work for you” and in smaller writing “by Sock - who uses an Invacare Action 2NG”. There is a drawing of a wheelchair in the centre.
Page 2 reads “Choosing a wheelchair. Look for adjustability (can you change wheel height? COG?), seat width (as close to your size as possible), and arm rests that can be lowered/removed.” Each item has a small drawing illustrating the point.
Page 3 reads “Adjusting a wheelchair. You will need… Allen key set (bike ones are good!), Pliers (for holding bolts) and Phone (for access to manuals, taking photos at each step.” Each item has a small drawing of it.
Page 4 reads “1. Adjust Wheel height. This can be done where the wheel “plugs in”. Your fingers should touch the wheel hub centre. If you can, move the wheel forward too (centre of gravity adjustment).” There is a small drawing of the wheel base, an arm reaching down to touch the centre of the wheel and a wheel base with an arrow pointing to the right showing it being moved.
Page 5 reads “2. Arm rest adjustments. Get your armrests as far down and as far back as they go. I keep mine on because of muddy weather/to protect clothes from spokes but you can also just remove them!” There is 2 drawings of a rounded and straight arm rest.
Page 6 reads “3. Modding castor wheels. Adjusting the height will change the seat angle. Smaller castor = easier turning, but makes rough pavements harder.” There is a drawing of a tilted chair with big castors and a straight chair with small castors, with a double pointed arrow between, with the caption “Play around!”
Page 7 reads “4. Footplates. You can take the footplates off and toe propel. You can make a foot sling out of a belt/luggage strap/paracord.” Both have an accompanying illustration. Then there is a note saying “if you have poor circulation, weakness, etc. oh might just want to keep the footplates on”.
Page 8 reads “5. Cushion. You need a cushion for your chair. Depending on how long you sit/how bony you are, you might need to spend a little more” then “£: Foam. ££: pressure relief cushion. £££: EBay/second hand for jay, invacare, low zone etc.”