Trigger warning ahead: I have Hidradenitis suppurativa, Stage 3. It is a chronic autoimmune disease with no cure. It has been untreated my whole life. It started when I was about eight years old. I am thirty-five now. I am terrified and humiliated to tell my story. But it needs to be heard. My groin and thighs are covered with boils. My father would restrain me and stab thumb tacks into the boils before he raped me. I have never asked a doctor about them. They are a constant
Wow! The Facial Pain Research Foundation wrote about my experiences during COVID-19.
I am very proud of this and the words I spoke to the world. Please have a read:
https://www.facingfacialpain.org/index.php/35-comics-1/352-pain-through-pandemic #trigeminalneuralgia #raredisease #COVID #COVID19 #pandemic #strongAF #disability #disabilityawareness #motivationalspeaker #wisewords #perspective #facialpain #research #science #HannahCrazyhawk #article #covidexperiance #Spoonie #S
Dear able-bodied people,
• Stop asking us if we're better yet.
• Please READ the definition of the word chronic.
• Stop pushing your "miracle cures" on us.
• STOP, for the love of fuck, telling us to do more Yoga.
• And if one more person tells me I'm not trying hard enough and to think positively, I will fling them so deep into the sun that they will start fusing hydrogen in their assholes!!! #PleaseStop #chronicillness #ableism #chronicpain #spoonie #surgery #Tr
I am still here. My surgeon yanked out both my gallbladder and appendix. It was one of the most horrific, terrifying, and painful surgeries that I've ever had. My symptoms (101° fever, extreme right upper quadrant abdominal pain, sternum pain, 150 HR at resting, vomiting, bile reflux, fatigue, jaundice, lack of appetite, not eating, etc...) have all been present for a YEAR. And my former primary "doctor" literally kept telling me to stretch and do yoga and that these thing
Trigeminal Neuralgia is the most insidious and difficult condition to explain. Nerve pain is complicated. So, I drew it. I think this chart could also apply to many other types of chronic pain. I hope it helps you see and if you also have Trigeminal Neuralgia, I hope it helps you know you're not alone. "There's a monster inside my face,
It creeps and seeps into my teeth,
Grinding and twisting the nerves between,
My eye sags and melts inside,
My cheek crackles open with jolt
If you're chronically ill you know it's absolutely essential to have a good primary care physician. If you don't, things go downhill fast.
For the past year I've been struggling with a primary doctor who never actually listened to the things I said. In my last two visits with her she asked, (the same question both times) "who told you that you have Rheumatoid Arthritis?" She would examine my hands each time and doubt my diagnosis (that a rheumatologist gave me!).
Dear Spoonie (dear self in today's case),
It's okay to be sick. It's okay to hurt and be angry and sad. It's okay to cancel plans, to miss events you really wanted/needed to attend, and it's okay to care for yourself at the most basic levels. If all you do today is plug in your electric blanket and cozy up with a nice podcast about black hole physics, then I'm proud of you.
I know you're pissed beyond belief. You feel lesser, you wish more than anything you could just expe