That Girl With Chronic Migraines @girlwiththemigraine - Tumblr Blog

Joe Coe, host of Talking Head Pain, speaks with LGBTQI and BIPOC advocate, Sarah Reneé. Sarah Reneé shares her experiences of navigating migraine care as a person in various marginalized communities.

Queer, Black and in Pain Hello Tumblr! It’s been a hot minute but I’m back! Introducing the Talking Head Pain Podcast! A new migraine and headache post for all us. This was featured during Pride Month and National Migraine and Headache Awareness Month and I'm so excited to share with you my featured podcast episode of Global Healthy Living Foundation's Talking Head Pain "Queer, Black & In Pain", where I discuss my journey navigating diagnosis and treatment as a Queer Black Woman living with Migraine. It's taken me a long time to get to a point where I'm comfortable sharing this part of my life, especially in a professional setting due to the way Disabled, Black & LGBTQIA+ employees (and patients) are discriminated against. In a world that continues to try and tear us down, we still persevere, but it's a constant struggle. We need equitable access to healthcare and we need to all work together to ensure that happens. We need to call out bias in healthcare and work to fix racial disparities. Because everyone deserves access to healthcare. Black, Indigenous and People of Color do not experience the same level or access to healthcare as other patients. There are simply different barriers in place. My story is one of thousands of the struggles that BIPOC patients experience trying to get care. I'm hoping by sharing my story it will help elevate and bring to light disparities in healthcare and bring about change. Listen to our stories. Subscribe to Talking Head Pain today to hear my episode along with so many other important patient stories. The podcast will continue to grow as we continue to share all kinds of patient stories so I hope you'll support it! If you’re someone who lives with head pain and migraine, I’d love to chat with you and learn you story.

#migraine #bipoc #chronic pain #chronic illness #lgbtqia #podcast

absoluteconceptofbeauty

my brain is deteriiooioutaing i can hear it

sunshine-gremlin

Reminder to people with chronic illness:

When you need to explain you have an illness, but you don't want to name it because then people will ASSUME things and Have Opinions and we all hate that, just describe your condition using science words.

Oh you have narcolepsy? Not anymore! You have a neurological disorder that disrupts your REM cycle leaving you constantly sleep deprived.

ADHD? A neurological disorder meaning you have consistently low or inconsistent dopamine levels. It can make focusing difficult.

Urticaria? Auto immune disorder that makes your body produce too much histamine.

You don't owe people explanations but sometimes it helps to give them one.

manny-jacinto

John Boyega attending the rally in London’s protest against George Floyd’s death on Wednesday, June 3rd, 2020

little-misses-lee

Adjustments.

When you become chronically ill, you have no choice but to allow and take adjustments in your life. You become a different person, both to yourself and to others. Life in itself is suddenly a completely different game that you don't know how to play and noone is there to teach you. You have to adjust to a new way of living, a new way of feeling, both emotionally and physically, a new way of how people see and respond to you. You have to get used to feeling bitterness, sadness, anger, in a way you didn't feel before and you have to get used to fighting, for everything. Everything changes, from the way you sleep, to your mobility, to your ability to do a job that you love and are good at, just everything. I have had to accept that the anger towards my illness and disability, to how society views it, has made me mess up a lot of things that are really important to me.

It is hard to adjust to people being well meaning or sincere, whilst being ableist or ignorant at the same time. It is hard to adjust to the fact that if you point out peoples ableism or ignorance, it becomes somehow another flaw in your own personality. It is hard to adjust to the fact that you are often completely alone in your battles. You are somehow expected to stay happy, to control your emotions, to not finally snap at the things that hurt you emotionally, when you have forgotton what not being in pain feels like, when you haven't slept for more than an hour for days, when you are on medications that bring about more symptoms and when you are trying to balance your general wellbeing, your family life, your work, your medical appointments and the emotional upheaval of it all. .

IMAGE DESCRIPTION: A black and white photo showing a small section of building above an archway with a sign for the NHS hospital 'The National Hospital for Neurology and Neurosurgery'.

bigbadbabymama-deactivated20220

i have cancer, and i need help.

hi! my name is Kichona. i’m 25, and a mother to an adorable 2 year old. early february 2019, i was told the cancer i was born with (non hodgkin’s lymphoma) is spreading. not rapidly, but not at a snails pace, either. i have a tumor that tends to swell the most when i don’t need it to, it’s very painful and prevents me from working in the industry i work in (warehousing). my lymph nodes fill with fluid and it makes it hard to breath, eat and enjoy time with my son. i’ve been taking medication steadily that helps with the lymph pain & swelling, and the swelling of my arm. i have 2 to 3 chemotherapy treatments left and 2 radiation therapy treatments to go. getting childcare while i’m sick and bedridden hasn’t been easy (not easy as in i have none.) they’ve discovered 2 lumps in my breast that they’re hoping are just dense breast tissue, and i could possibly be facing ovarian cancer due to my family history (my mother had both breast and ovarian cancer)

in may of 2019 my physically & mentally abusive (soon to be ex) husband began an affair with a young lady that won’t quit harassing me. he has since moved in with her. that means i have no means of transportation anymore, being that my car was flooded during hurricane irma.

i was nearly to goal with my gofundme. i received an email from gofundme stating i could begin using a 0% platform fee. meaning they’d reduce the cost of my fundraiser being up. i then increased the fundraiser to try to gain back the donations i’ve recurved over the years that gofundme has taken.

the last post i made for this, is getting “stale” i guess, and i can’t seem to garner anymore attention for it so i’m making this one in hopes that it will. i need donations for my medication, 2 treatments of radiation, 2-3 treatments of chemotherapy, childcare, maybe a (used?) vehicle if possible, rent (we’ve been close to eviction since my stb ex husband moved out. he was the primary breadwinner.) food and many other things.

i am in the process of trying to get help with all of these things but in the meantime, please signal boost this. i’d really REALLY appreciate this.

(photo attached is my neck from my ex husband strangling me after i miscarried our child 6/7/19)

thank you. this means so much to me, to my son & i.

Kichona Lankford Bye Lymphoma/Hurricane Help! hello all! my name is Kichona. im a 24 year old mom, wife, daughter. sister & friend. at

chronicallyjessica

When your medication starts melting on your tongue before you can swallow it

[ID: Gif of Leslie Knope, a woman with blonde hair, grimacing and sticking her tongue out in disgust]

cg--archive-deactivated20220308

everyone: wow, you’re so good a describing your symptoms and what causes them and figuring out what works/doesn’t work for you!

me: thanks! it’s because I’m mistreated and abused by professionals if I don’t already have all the answers 👍

thegoodvybe

calvin-arium

It’s here !! The guide for two-legged people who don’t know how to draw wheelchairs !!! 7 pages of infodump ! Disclaimer : I don’t know everything, I have one (1) experience of wheelchair user who used both bad and good chairs, and I share what I learned.

Image description :

1) Calvin in his wheelchair saying “yo” under a huge title “how to draw manual wheelchairs properly by Calvin Arium, a wheelchair user comic artist”.

2) A character says “my character self propels in a chair that was outdated in 1970 lol” Calvin says “so it looks like you two legged people don’t know the difference between an hospital chair and a chair made to be independant” an arrow point the crapppy chair, saying “we never want to see this again”

a bubble says “the hospital chair is extremely unpractical, tough considering it’s cheaper than a good custom chair a lot of us have only this”

3) a character hurt himself trying to reach the wheels of the hospital chair. Several arrows point why the chair is unpractical : “high backrest restrain shoulders movement” “huge armrest restrains wheel access” “separated footrest : amovible, cheap, bulky” “x structure, foldable but heavy” “huge front casters for stability” “heavy wheels”

4) Several arrows point an active wheelchair (the KSL by Küshall) : “usually no armrest” “a low backrest allow more movement” “light, design, ferning expersive” “special cushion to avoind injuries” “knee angle is usually 90°” “one single piece of frame, sometimes entirely welded” “weight : from 4 to 10kg” “often rigid” “center of the wheel is the center of gravity” “higher quality wheels : less spikes”

5) A hand grab different parts of the wheel, pushing harder in the second half. Bubbles says “some have gloves, some don’t. The hand must grab the biggest area possible. Less movement = more energy. This is a common but not only way to push.Calvin is on his back wheels, rolling on grass and dirt bubble says “popping a wheelie is when a wheelchair user rolls on their back wheels to roll on every complicated surface.

6) several drawings illustrate the folding frame, the ergonomic but rigid and expensive backrest, the separated footrest (only for folding frame), the handles, the folding handles, athe amovibles handles, or no handles, the cool fancy loopwheels, the pretty custom colors

7) More Features ! The fancy rigid-foldable frame, the anti tippers (sometimes used by beginners), the motorization (wheels, smart drive) when propelling yourself is difficult Calvin says “and now vroom vroom motherfuckers”

Consider also supporting me by buying me a coffee on ko-fi : ko-fi.com/calvinarium

Thanks !