🤠 FROM THE EDITOR: A Big Dull Needle Please
Welcome neuro-warriors.
It’s Rarely Serious, where we treat rare neurological diseases with the same respect they deserve—which is to say, we laugh at 'em like they just challenged us to a line-dancing contest.
After a short interlude from the needle, I’m back in the saddle and hope that the clear liquid in the little bottle is really medicine. We all wonder, right? Looks like water but never had the nerve (insert snort here) to try it like you test a 9 volt battery, across the tongue. Gotta believe; I do.
We've been busier than a one-legged cat in a sandbox, fixin' up some fresh medical humor that'll make your neurons giggle (assuming they're still firing properly). We've got stories bigger than Texas, humor sharper than a tack, and just enough sarcasm to keep your immune system guessing.
Fancy University Scientists
🧠 NEURO NEWS: Scientific Breakthroughs You Probably Misunderstood
Researchers Discover Your Body is Basically Confused
Scientists at some fancy university (we'd tell you which one, but we forgot mid-sentence—thanks, brain fog) have confirmed what we've known all along: our immune systems have the GPS skills of a tourist in downtown Houston.
Instead of attacking actual threats, our antibodies decided to take a scenic detour through our nervous system. When asked for comment, our nerve cells were unavailable for interviews due to ongoing demyelination.
New Study Shows Patients Know More Than Doctors Think
In shocking news, a recent study revealed that rare disease patients have become accidental medical experts. After the 47th specialist appointment, most patients can spell "polyneuropathy" backwards while standing on one leg (well, trying to stand on one leg).
Doctors everywhere are reportedly "surprised but not surprised," which is basically their default response to everything.
🏥 THE APPOINTMENT RODEO: Surviving Your Next Visit
Pre-Appointment Preparation (aka The Night Before)
Print out your 23-page medical history that nobody will read
Practice pronouncing your medication names in front of the mirror
Prepare your "elevator pitch" that explains your disease in 30 seconds or less
Accept that you'll forget everything the moment the doctor walks in
During the Appointment
Watch the doctor's eyes glaze over at "rare neurological disorder"
Hear "That's interesting!" (Translation: "I've never seen this before and I'm mildly terrified")
Get asked if you've tried exercise (Narrator: You have. Your legs disagreed.)
Receive a referral to another specialist who will also have no clue
Post-Appointment Reality Check
Realize you forgot to mention your actual main symptom
Schedule next appointment for 4 months out
Start the countdown until you can do this all over again
🎪 TEXAS-SIZED TRUTHS ABOUT RARE DISEASES
"Everything's Bigger in Texas" Including my medical file, my medication list, and my co-pays. What's not bigger? My doctor's understanding of what's actually wrong with me.
"Don't Mess with Texas" Someone needs to tell that to my immune system. It's messing with EVERYTHING—my nerves, my balance, my ability to remember why I walked into a room.
"Bless Your Heart" What every Southern nurse says when they see your vein situation before an IV. It's equal parts sympathy and "Lord, give me strength."
"Fixin' to" What I'm always "fixin' to" do:
Fixin' to feel better (any day now)
Fixin' to remember where I put my phone (it's in my hand)
Fixin' to explain my disease without seeing eyes glaze over (still working on it)
Red 10 on the Black Jack?
🔬 SUPPORT GROUP CHRONICLES: Overheard in the Wild
At the Infusion Center: "My veins are harder to find than good barbecue in New York City."
In the Waiting Room: "I've got more specialists than a Houston Rodeo has events."
During Physical Therapy: "My balance is more off than gas station sushi."
At the Pharmacy: "This medication costs more than my first car. And that car actually worked."
In the Doctor's Office: "If I had a nickel for every time someone said 'have you tried yoga,' I could afford my co-pays."
There’s a lot to be said about Home Infusion
🌟 SILVER LININGS: The Perks Nobody Talks About
Handicap Parking
Front row seats to every establishment. It's like VIP access, except you earned it with your malfunctioning nervous system.
Medical Knowledge
You can now out-talk most medical students. Your neurologist secretly Googles things you mention. This is your superpower.
Creative Problem-Solving
Can't walk straight? That's not drunk, that's "creatively navigating space." Your tremors? "Expressive hand gestures." Brain fog? "Selective memory management."
The Community
Found a whole network of folks who understand that "How are you?" is actually a 45-minute conversation about symptoms. These are your people now.
Perspective
Everything else seems manageable when you've survived insurance appeals, prior authorizations, and that one nurse who couldn't find a vein if it wore a neon sign.
🎭 UNTIL NEXT TIME, PARTNERS...
Remember, fellow neuro-warriors: We're not just rare—we're Texas rare. That means we're still kicking, just a little wobbly. We might need handrails, but we've got heart. Our balance might be questionable, but our humor? Solid as a Hill Country oak.
Keep laughing at the absurdity, keep supporting each other, and never let anyone tell you that sarcasm isn't therapeutic.
Stay rare, stay ridiculous, and remember: even when your neurons are line-dancing without permission, you've still got this.
Y'all take care now,
Kit Whimsley
The Rarely Serious Team
Moooooove over!
📧 Got a funny rare disease story? Email us at [email protected]
Disclaimer: We're not doctors, we just play them in newsletters. Don't try any of this at home, work, or anywhere humans might witness it. Side effects of reading this newsletter may include: uncontrollable snorting, the urge to share medical puns at dinner parties, and temporary immunity to taking life too seriously. Always consult your healthcare provider—preferably one with a sense of humor.