When Rare Neuro Diseases Crash Halloween (And Not in a Cute Costume Way)
🤣 NUF NEEWOLLAH
)detivnI toN er'uoY :reliopS( ytraP emutsoC s'metsyS suovreN ruoY :lairotidE 🎭
.iF-iW citamelborp dna enieffac orez no lla ,cihcysp lanoisacco dna ,relgnarw mialc-ecnarusni ,evitceted ,tsigoloruen yalp ot gniyrt kcuts er'uoy ,elihwnaeM .srepoop ytrap cissalc—setivni gnidnes tuohtiw thgin tsal sevren ruoy ni evar esirprus a werht metsys enummi ruoY !stargnoC
?thgir ,elttab eht flah si gniwonk esuaceb—.m.a 2 ta smotpmys gnilgooG ni DhP a htiw eibmoZ ?ytilaeR .orehrepus elbisivnI ?emutsoc maerd ruoY
.laer tog tsuj neewollaH .rovalf rof ni delknirps "?em yhw" fo hsad a htiw ,ynnuf dna ykaerf strap lauqE ?ebiv ehT
"Hold this up to a mirror to read - because living with rare diseases already has us looking at everything backwards anyway! 🪞"
🦇 Table of Contents
🎭 Editorial: Your Nervous System’s Costume Party (Spoiler: You’re Not Invited)
👹 Rare Neuro Diseases: The Real Party Crashers
🧟 Medical System Nightmares Bingo (Spoiler: You Win Every Time)
👻 Invisible Illness: Winner of Best Disguise Award (and No, It’s Not Casper)
🕸️ Diagnostic Labyrinth: The Escape Room No One Wins
⚰️ Treatments from the Crypt — Take Your Pick of Tortures
🕷️ Caregivers: The Real-Life Monster Hunters
🧙♀️ How to Survive Halloween Without Becoming a Neurotic Ghost
⚠️ Disclaimer: We’re Funny, Not Licensed
Everyone is invited
👹 Rare Neuro Diseases: The Real Party Crashers
CIDP: When your nerves decide to host a “myelin buffet” — BYOC (Bring Your Own Chainsaw). Guess who’s on the menu? Spoiler: It’s you.
GBS: The cousin who RSVP’d yesterday but showed up unannounced and never really left. Running late isn’t their style; running fast is.
Myasthenia Gravis: When your muscles ghost you mid-conversation — talk about mixed signals! Your eyelids try to sneak out early too.
Charcot-Marie-Tooth: Genetic creeping crud starting in your toes like a limping poltergeist, turning every walk into an uncoordinated dance.
ALS: Motor neurons dragging out the slowest disappearing act ever, leaving you wondering if it’s a marathon or a really long nap.
MS: The wildcard that shows up with a costume change every week—just when you think you figured it out, surprise!
Bonus Rounds: Stiff Person Syndrome, Lambert-Eaton, Neuromyelitis Optica… Basically, the entire monster zoo that nobody invited but mysteriously showed up anyway.
Everyone say BOO! when he wakes up!
🧟 Medical System Nightmares Bingo
Get a line, get a prize — if you survive the round:
Monster | Classic Move | Your Reaction |
|---|---|---|
Prior Authorization Vampire | Sucks your paperwork and your soul dry, then asks for more | Cry quietly in a dark closet |
Insurance Denial Werewolf | Devours claims under full moonlight, repeats every billing cycle | Hole puncher for appeal letters |
Appointment Scheduling Banshee | Screeches and hangs up before you reach a human | Resign to fate, cancel plans |
Blood Test Goblin | Draws enough blood for a vampire clan | Wonder if you’re part vampire |
Bonus: Survive all for a certificate of “Most Persistent Human.” Frame it; you earned it.
👻 Invisible Illness: Winner of Best Disguise Award (No, It’s Not Casper)
“You look totally fine!” they say, right as your legs plot mutiny and your nerves stage a formal complaint with HR. Costume? “Totally functional human who just needs a nap... or twelve.” Spoiler alert: Both are lies.
Perfect disguise for those who want to keep the mystery alive (and avoid unwanted advice from well-meaning ghosts).
🕸️ Diagnostic Labyrinth: The Escape Ride No One Wins
Year 1: "It’s probably stress." (Sure, blame my love of horror movies.)
Year 2: "Try physical therapy." (I've mastered the art of stretching like a cat.)
Year 3: "Lyme disease again?" (Like an unwanted sequel nobody asked for.)
Year 4: “Rare? Hmm, let me refer…” (Great, more referrals, more mystery.)
Year 5: Diagnosis shock and horror via Google at midnight (because why not mix horror genres?).
Repeat this merry-go-round until brain melts or diagnosis arrives—whichever happens first.
Treatments from the Crypt — Take Your Pick of Tortures
IVIg: Vampire Edition: Sit, drip, binge-watch, repeat. Beware the post-infusion brain escape (aka headache). Think of it as a spa day, but with needles and existential dread.
Steroids: Dr. Jekyll & Mr. Hyde: Moon face, rage, insomnia, midnight pizza cravings. Emotional fireworks guaranteed––part miracle, part reality TV.
Plasmapheresis: The Keurig Method: Your blood, but “filtered and fancy.” You can't move for 3 hours, so plot your bathroom strategy with military precision.
These treatments may not cure the scares, but at least they keep the monsters guessing.
🕷️ Caregivers: The Real-Life Monster Hunters
Forget slaying vampires; caregivers face 3 a.m. wake-up calls, emotional rollercoasters, and random mood swings bigger than any haunted house. They possess supernatural patience and are skilled snack providers. True heroes of this bizarre festival.
🧙♀️ How to Survive Halloween Without Becoming a Neurotic Ghost
Own the couch throne with “sit-down candy duty.” No judgment, only candy.
Stick to full-size candy bars. Fewer porch trips means more energy conserved for dramatic exits.
When Karen starts with, “Have you tried...?”, deploy your best polite smile and strategic blinking. Then run.
⚠️ Disclaimer: We’re Funny, Not Licensed
This newsletter’s humor is steeped in lived experience, but check with your doctor before trying any medical advice here—or elsewhere—even if it’s the funniest newsletter you ever read.
Happy Halloween, neuro warriors! Stay spooky, stay sarcastic, and remember your wit is the sharpest weapon against those nerve monsters. 👻🧠✨
!yzziD m’I