Dear John…. it’s that damnable Top Ten

Ten Things I’ve Learned in the Past Two Years

-Hey if you’re not John it’s okay. Read On! Just wanted to make sure, you know-

  1. Remain Teachable
  2. I’ve discovered Ouija and Talking Boards on television shows, and they’re especially prominent in the 1950’s and early 60’s. Yes, I was looking for them. An upcoming post on Ouija Mistress will be filled with new and old info..
  3. This one ties into the above. Nice. Okay, my normal working/waking hours are, uh, naps a lot. Am awake all night to watch Boris Karloff’s Thriller, Alfred Hitchcock Presents and The Twilight Zone. Hope you’re sitting down. Both Russel Johnson (Professor on Gilligan’s Island) and William Shatner (did an album with Ben Folds, Star Trek) CAN act. Jesus in a sidecar eh? I’d like to specialize in pop culture use of talking boards. What do you think, oh great and wonderful Ouija History Guru Mr. Murch?
  4. I lost the will, and burning need, to write two years ago. I only recently noticed it occurred at the same time that my ability to play the piano was crushed. I still have a 3/4 concert grand 1928 Knabe for sale in Reno. Make me an offer. Or, go by and play it on your way to Burning Man this year!
  5. Since I can no longer make or write music I must find a new life and am ready to start over. I was thinking astronaut. Or maybe a fireman -toothy grin-
  6. Hold and Hug and tell the people in your life that you love them. Do it. NOW DAMMIT!

    My 80 year old mother became (more of) a raging warden than usual. She had lost 25 pounds in a month then had a stent put in. After being home for 2 weeks she was worse. Hardly moving, any conversation agitated her, and one morning I found her dazed on her bathroom floor. She was to see her doc to check on the stent later that same day. She was gray. She gave up on talking and moving.I called 911, thinking she was stroking out. It’s a family specialty. While on the phone my 85 year old staggering, rather smelly, slowing going into lala land mentally, stepfather began to YELL. GET OFF THE PHONE  She has a doctors appointment in 2 hours!! He was pissed. I told 911 dispatch nevermind and hung up.
    Then I looked at my mom and realized I had been arguing about her life with a fucking demented person.  Called 911 back. Mom was taken by ambulance to the hospital. Again, she was having a heart attack. A second stent was implanted. Scary and sad. I made some phone calls later that day to reach out and check in. My best friend from college, Tom Smith in New Jersey, died recently. He was my age and a special and dear friend from school.. I couldn’t attend the memorial service. Tom had me watching Doctor Who in 1978.

  7. Been absent from FaceBook.and  I like it -singing-.
    Pretty much altogether. Guess What? I don’t fucking miss it at all!  The ONLY reason to log on is to check in with my Talking Board and Ouija peeps group and the Blew Crew; the Transverse Myelitis group. Piss off FB. Pretty much altogether. Stresses me the hell out. Call me.
  8. The CDC is beginning their version of Sherman’s March through Georgia. Starting in the next couple of months everyone in this county on pain meds, EXCEPT cancer patients, are going to be screwed getting their pain meds, There will be phone calls, hold ups on refills,..gonna get ugly out there. If you or anyone you know are in chronic pain start googling. Gotta dig my Pain Management Doc  He handed me the CDC statement to take home and read.
    The government is trying to frighten the public about a non-existent drug problem.  Again, oy. How can opiates be over-prescribed when I (and everyone else on an opioid) has to pee in a cup every month? This verifies taking the amount prescribed (Checking dosage is correctly ingested and there are no street drugs. If a patient tests ‘dirty’ 3x the DEA can pull an MDs license. This is my 2nd pain management doc, and in a different state than the first. No reputable doc is going to risk his license. Oh, and I heard a news anchor call oxycodone Hillbilly Heroin. EEEdiots. Hillbilly Heroin was made with oxycontin. The latter has been re-made as an uncrushable tablet so no more Hillbilly for the meth and heroin crowd. I do know that the VA prescribes opiates to soldiers with PTSD. WTF?! Talk about misuse. Pain meds for a psych problem?


    Just now the pharmacy only sent 2/3 of my fentanyl patches because he changed the prescription to every 2 days from every 3 days. Insurance company caught it. I have to call my doc, so he can call the insurance company and get an override. MAJOR FUBAR. I can hardly wait for the first law suits from people in horrible pain but cancer-free…and unable to obtain relief. My fentanyl was increased because it stops working close to 20 hours before it should. I’ve been waking up screaming or in tears and crying, from the pain,the night before it’s due. That’s twice a week. I don’t sleep the other nights because I’m afraid it’s gonna happen.  We Are Warned. Write your congressman. Please. I believe that since cannabis is becoming legal that the government has to find something else drug-wise to frighten us all.

  9. VICELAND is the best television channel that’s hit the airwaves in, well maybe ever. Check it out. You’ll learn important and underreported news. You’ll laugh your ass off as well. Not good if you’re easily offended. Well, shit you wouldn’t be reading this easily offensive blog then would ya?
  10. I’m going to the Burn with The Demon Seed (my daughter, aka ~C) no matter what. ‘Cause I can can can can can!! I DO have insane (in the membrane insane in the brain) family and I miss them. I am leaving an art and mix-tape art piece to place in the Temple for Tom Smith. I’m crying now. Had no idea how much I cared for him. Don’t even know how to get ahold of his partner. Jerry. Yeah Tom and Jerry, it gets better. Jerry is their local parish priest lmfao. They were together close to 30 years
  11. Remember: One Love

    score is Love Love

    One Love

  12.  People need human touch. When it’s gone it will break you. Smile at strangers today. Hug your kids Tight, even if the little bastards are covered with mud. Call your parents, if they’re still with us.  I don’t know exactly where my father is buried. There was no hugging or emotional display in our family growing up. Dad’s at the Military Cemetery in Riverside. I miss him every day. The important thing is I keep him, and Tom, and other friends and family who have passed close to my tiny Black heart. A touch can sometimes be special words. Treasure them.
  13. I’m still alive because there’s more to do! Besides being the funniest person you’ll ever fuckin’ meet, of course. The whole fireman thing may not work out, but I’ve got ideas. No money to implement them, but ideas. Ain’t it always the way. I can even volunteer. Bad pain days will see this wacky wench in bed, but good days I can play with kitties, maybe get a kind of intern job at the local dispensary. There’s never too much to learn, and herbal medicine and natural cures are always the best for a A little more chemistry education, a screen test, submit a script.  Lemme know kids.I want to travel, and someday dance again. It could happen, most likely at Burning Man where there’s magic, moonlight (and cannabis smoke) in the air.
    Lemme know kids

Okay 13 for the price of 10. Sasha Deal!

Life isn’t over when the shit times come. You just work through the mire hour by hour. There’s a lot of 12 Step ideas that can be incorporated in any unexpected clusterfuck. Thanks Dr. Bob. Okay you too my friend Bill. So, I’ll leave you with the Absolute Coolest Thing I’ve Learned in the last Half Century… Take my hand…

 

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Currently Listening: Rotundi
Album: Play On
Released: 1981

~R.C.

p.s. I was a punk before you were a punk (name that band Buzz Guapo, despite my love of all music 😉 Tune in next week for the Buzzcocks

For Just $19.00 A Day You Can Make Some Smarmy Charity CEO Rich….OR…

give it to people who REALLY need it, like me.Really. To be equitable, there are always your patents, or YOU because when 65 comes you are screwed. Huh, Screwed rhymes with Dog Food. Coincidence? While I am not 65, Transverse Myelitis has placed me in the Old Folks Back Home Category.
WAIT! You mean I can’t get into any low-income housing because I’m NOT 65? If some poor bastard is a paraplegic, and he’s not 65, well, he won’t be putting on any weight. No wonder Poor Christopher Reeve had to wear that full neck brace on his last appearances…. He was disappearing. True Story. Saw it on the Lifetime Chanel.
Here’s the point, for all of you that actually have disposable income and are good enough people to contribute your hard earned bucks to saving the environment, innocent people need emergency help due to natural disaster, maybe even some Syrian families who wish to flee.

peacebus_image

and NOW!!! Moving right along to the point of this post after venting anger at terrorists and governments and crustaceans

 

You could always go to charitywatch.org

This paragraph helps sum up how the average bonehead can think. Not MY READERS SO HA. You guys can see what’s wrong right away

“.Maybe to some donors, there’s no discernible difference in these two claims. You see “85 cents” and “programs” and figure the charity probably is worthy of a donation. Other donors may pick up on the use of the words “every dollar donated” in the second claim versus “every dollar spent” in the first claim and think that the second claim is more persuasive. Either way, perhaps most of you are thinking:  Why does it matter? Don’t both of those claims essentially mean the same thing? And the answer is: They certainly don’t mean the same thing,”

For $19.00 I could give that kid a month’s worth of Sparkletts. Meanwhile Old Graybearded (The same guy who’s been pitching for Child Fund or whatever since I was a kid) Dude hands the maggot covered kid a pail of water enriched with cholera and feces from upstream. What is this? Teenagers on YouTube fer chrisskes? How much DO they pay Sara McLaughlin to appear in front abused animals? Does that charity actually do any good?

Did you know that one of the WORST places to give your help is the Red Cross? Check it out.
Do you know who gives to the Sierra Club, WWF and several others… but not the Transverse Myelitis Association (they fund research for TM)? My Mommy. Alright I get it mom. You want the basement back.

Hi Mom! I said HI MOM....

Hi Mom! I said HI MOM….

fuck_off

Yep, that’s me in 15 years. Thanks Mom, now I can take it out on The Demon Seed because (say it with me y’all) ‘Mom is always right. Because I said so!’

Okay, this post doesn’t even come close to the notebook bursting next to me. Now you’re doomed to my cyber voice. My hands are too fuckered up to use a pen much anymore.

Don’t get any ideas. See this quill pen? Yeah, You’d BETTER cover that left eye! This hot bitch still has quite the hot pitch. Good seeing you all -more stinking crickets- and I shall return. Soon

~R.C.

 

Currently listening to:

Rockin’ the Suburbs (18+ Warning Version)
Ben Folds  copyright 2001

4th of Juplaya 2014

4th of Juplaya

4th of Juplaya 2014

Ta-Fucking-Da!
In a Wheelchair and Every-thang

So I made it. Tough going. First night my navigation skills proved pathetic. I do blame the driver. It wasn’t me. While a search party was scouting for us remember the playa is 300,000 acres of mostly barren desert -we were hopelessly stuck miles away from our camp by 2:00 a.m.

Black Rock Desert is the site of many land speed records and more importantly the opening scene to Buckaroo Banzai. Remember the Jetcar?

Buckaroo Banzai returns from the 8th Dimension. Scene shot on The Playa; location of 4th of Juplaya!

Buckaroo Banzai returns from the 8th Dimension…via The Playa!

The morning dawned with our truck mired in mud.

At one point I found myself rolling across the sharp-edged desert floor in only a thin, yet delightfully colorful, sarong.  No shoes, no sunscreen.  The wheelchair was trapped a good quarter of a mile from the truck by this time. Being a genius I had gone to look for human beings. Fergus, my trusty driving companion, had taken off hours before to do the same. Obviously no help was forthcoming and the trees in the distance appeared SO close.
Pro-tip: Objects are Farther Away Than They Appear.
So I was literally rolling my body back to the truck. Not in a good way if you get my trails. oops I meant drift. Body covered with cuts and scrapes I resigned myself to death in the scorching desert heat. A pair of La Perla panties on my head to block the sun, I would leave a tasteful and fabulous corpse. Who else would wear a pair of $75.00 underwear on a camping trip?
Show of hands please. No one? No one? Bueller? Bueller?

While Burning Man is held on the playa, the entire space of Black Rock City (The actual city and area of  Burning Man) is only fraction of Black Rock Desert. The 4th of Juplaya celebration, unsanctioned by Burning Man or anyone else, is open camping encompassing the entire 300,000 acres. You don’t bring your bicycle to this event. Oh, obviously we were eventually found. Turns out my daughter had also been ‘lost’ the previous evening.
Swear to goddess this is the first time in four years the voyage to our 4th of Juplaya camp has resulted in missing campers . Gimme back my driver’s license you bastards!
I missed driving the old ’91 Ranger 4×4 this year. Being the passenger -insert rockin’ Iggy Pop tune here- is a completely different experience. Turns out flooring your vehicle to make mile-high rooster tails just isn’t possible in a wheelchair.

The kids, aka The Demon seed and her roomie, set up half the tent before running off to the bar. The Children of the Corn also completed installation of my brand new self-inflating  sex doll 17″ tall mattress. Hey, looking good! Except for the whole missing rainflap thing which allowed a full view inside the tent. Decided to sit down on this new mattress. Two seams immediately ripped so that was special. 100 miles from Reno meant an uncomfortable two nights of sleeping. Eh, I’ve been through worse. Two nights? Hell, I slept on two husbands for hundreds of nights.
Really weird part? The mattress remained completely inflated. Totally lopsided and unusable, but inflated.

4th of Juplaya brings the joy of using the shaded hot springs and cold pools. Days spent dipping, swimming, meeting people from all points of the planet, PBR or a toke may be your pleasure. Night is for camp parties and travel via a few mutant vehicle buses and your own car.

Firearms are encouraged  icon-crosshairs  and there’s nothing like blowing shit up in the desert. Unfortunately there was no FrogBat this year. Not sure what happened to our mascot, but hours of waiting with firearms at the ready, proved unsuccessful. It was all fun no matter the lack of giant FrogBat and the traditional Shooting Till it Blows Up Real Good.

Plenty more targets were available through the kindness of strangers. Ah, ‘Murica. No police, no Burning Man dust storms, the stark beauty of the Nevada desert and meeting up with friends. Many people have eschewed the Burn altogether, choosing the 4th instead. This is how Burning Man was originally done.  A lot more low-key, a lot more freedom.

Spanky’s Wine Bar made our appearance, and my daughter and her roomie drove up from San Francisco.  Didn’t see much of her this year. A 20-year-old hottie college student has her advantages when hitching a ride to desert parties, hitting flaming golf balls, and staying out all night.
Being 52 and in a heavy-ass wheelchair? Not so much. On the positive side, the party comes to YOU.
Hanging out at our bar with Admiral Painjoy spinning the tunes was fun in itself, so no worries there. Lucky Bastard, Sassy, and all the crew dancing up a storm. Visitors stopping by all night to have a cocktail and shoot the breeze. Verbally… weapons stored at their camps for the night. The Demon Seed made my 4th by helping me up (and holding me up) to dance the traditional Start of the Spanky’s Day to ‘Morning Train.’ Ha! George Michael thought I was never gonna dance again.

Luckily, all Spankers came to the rescue and hauled the wheelchair beast in and out of The Admiral’s pick-up as we trekked for parties one night. Seems that all of the other camps and their bars and art installations chose the same evening to attempt carousing. At one point it looked like a wagon train with headlights.

Much fun was had, a LOT was learned about my potential survival at the Burn this year. I’ll need a helper. There’s no way the radical self-preservation of Burning Man will be completely mine again.
The friends remain. The happy offers of help and kindness are abundant. A minion? Bring one forth. Second? Make it so!

Best of all… I’m still an amusing smart-ass and the perfect bar manager. Being the only booze-free person behind a bar is helpful at times.  On Black Rock Desert or any other surface of our amazing planet. This goes for the 8th Dimension as well

Happy Trails my friends. Let the summer sun take you on a journey

~John BigBoobies

Wheelchairs and Ouija and Pink Letters Oh My!

Ouijamistress.com Ouija Over a Century of History and Mystery

Header for the new website. Artwork/design by Adam Sendek; Chowderhead Graphics

May get my new Ouija site up this week. Oh sure you’ve been hearing this for a month. It’s become as annoying as your mom shouting ‘Did you bring out ALL your white laundry to the washer? I found a sock under your bed last week. Jesus it was crunchy, how long had it been there?!’
Used to just stare at my brother and walk away. With a little shudder in my step.


April 8 2014
Facebook: Spanky’s Wine Bar Group
via T. Wade Paul

Jazzy Wheelchair for The Wench
Hi Spankers ! Good news, just got off of phone with the Pain Joy…..we stalled at $1100 for Rachael’s chair….We are buying this used chair for her and a car carrier…..which will leave her with 300 bucks….
we will buy a beater chair for the burn with that so her new chair stays nice….A very warm thank you for your efforts…..WE WIN !


April 12
Facebook: Spanky’s Wine Bar Group
Via Jim Hillas

R.C. Black is Rollin'!

Get me some spinners and LEDs ma’ man

Our beloved, buxom, slender, sardonic, sexy Piano Wench! Learning about, and riding on her new Jazzy power chair.


Listen Up. This is Important

In 5 days a miracle occurred. Life saved and changed in the blink of a giant’s eye. I’d had dark thoughts these past weeks. Darker than usual. Out of nowhere, an entire band of beautiful amazing people knocked me on my ass in surprise. With kindness, not sociopathic behavior! Two Spankers, happy Burning Man camper buds, put a page up on FaceBook called ‘Get The Wench Some Wheels.’ You can see what was achieved. Fastest fundraiser in history swear to god. I’m on a roll and gettin’ ‘er done. Check it out.

The past 5 years have convinced me I’m working off Karma from that one past life when I was Eva Braun. Hey, wasn’t that dirndl-wearing freak dead by the time she was 40? In a ditch, covered with petrol? On her wedding day? By the time she was my age she’d been dead for 12 years.
Huh. Maybe I ran over a squirrel or something.

After a few years of waffling (Mmmmm waffles) I decided to clean up my credit. Apparently renting a new apartment requires that I pay to have my own credit report run. Not that living with mom is bad

Alfred Hitchcock impersonates me. Living with my parents.

Jesus. Might as well buy a new house with all the paperwork required. Oh I can’t. My credit is tattered. So I went to FREECreditFREEKarmaInsertCreditFREECardNumberHereFREEItIsFREENoReally.Com
Already know what’s on there.
Purchased three summer homes and twelve new sports cars. For physicians and hospital CEOs. You’d think they’d at least invite me over.
There’s the huge Wall-O-Notation which represents the end of life with PsychoFuck(TM), the second ex-husband. That boulder will be expunged from Experian in another year or so. Trading that asshat for financial ruin was the best deal ever made.
I don’t need all that stuff left behind in Michigan. All I need is this chair…and that thermos. Maybe the lamp.
the jerk

Does a potential creditor gives a flying f*ck that until the past 5 years you had Excellent Grade A Prime credit history? Paid in full mortgages? Obscenely high credit card limits; none ever close to being maxed out, or even carrying a balance? No. It’s always ‘what have you done for me lately?’ Killjoys.

The pink letters. What’s that all about? C’mon you’ve all had a utility shut off at least once. Probably due to forgetting the bill. was due. So the pink? Do corporate interest-suckers feel it’s calming so we’ll open it to find a baby shower announcement?
Not that anyone in their right mind wants to attend a baby shower.

Shouldn’t the final notices be Institutional Green? Hell, I’d open that baby ASAP.  It’s the color of checks. And money. No more debtor’s prison. You just can’t obtain a place to live.  Not even slimy welfare-mother-knife-wielding-ex-con low income housing. No Soup for You!
What’s in your wallet?
Dear god I hope it’s not a Baldwin.
wha's in your wallet motherfcker samuel jackson

 

Right now Badness is Banished! Thoughtful, busy, beautiful people have shown their smiles and concern. These I consider my real family. Besides the Spankers, some of my dearest FB Only friends contributed to the Jazzy. Grand long-time friends too. Wow. I Believed only cute little kids with FDR leg braces or cancer received donations. Bliss and surprise came at THE PERFECT TIME.
The night before the chair unveiling I got a call from The Governor.  He’s explained how fat and disgusting I am on three prior occasions over the past couple of years. This time it was my apparent ugliness that explained my boyfriend woes.
‘Well no wonder P~ fell in love with S~ and dumped you! She’s beautiful!
‘What are you saying Governor?’
“Well he’d never have a chance to sleep with a woman that beautiful otherwise!”
‘R~ you’re beautiful on the inside. Your personality shines blah blah blah.-repeat- So I love ‘ya!’ My Achilles heel is on fire. Was wishing he’d die in it at that point.
The guy gets mean when he drinks. Have to remember that.

Some people will never be happy. The only happiness they receive is by belittling others to make themselves feel superior. I don’t believe there’s a soul alive who hasn’t suffered random cruelty doled out by people with this character defect. I learned of a buttload more crazy-ass goodness that the ex had dished out about me around this time. Thought about putting him in the Bonfire with The Governor but I’m shrugging it off now. I forgive easily.

It was the Katrina before the calm. Karma has swung on back my way. The world’s axis has tilted in my favor. I’m that good. With friends like the ones I have, no one, and nothing, will run me over and leave me as roadkill again.
The Ouija site will get up and running. Am already beginning Hazmet clean-up of the credit debacle. Actively looking for a place to live, alone, and happily. Perhaps in San Francisco.

Need to keep on racking up those Good Karma Points. Mostly though, I don’t deal well with hate, being angry with people or mental gymnastics at 3:00 a.m.

Do my best to help others. Whenever I can. I LIKE it! Making people happy is a rare opportunity. If you’re happy then I’m happy. While drinking I did my share of hurting people I love. As making my amends continues fate is casting a wink at me. My beloved Spankers and friends shocked, surprised and delighted the hell outta me with the power wheelchair. Who knew being sent to the electric chair would be so hot? Tears of joy kids. I’d do the same for any of these people, naturally. Just never believed that anyone would do something this extraordinary for me.

The morning of the Jazzy Chair Unveiling and Announcement I had awoken feeling destitute, trapped in a prison cell, in miserable pain, unable to get Ancient HTML Of The Gods to work, and of course fat and ugly.
The stunning generosity of friends immediately changed that downbeat shit to an air of strength that has not left me since.
I’m a card-carrying Genius, friends overflow with support and love, there is a roof over my head, it’s warm in here and I’m too sexy for my cat.
There’s a new chapter in life coming soon. I experienced a real miracle/transformation, found that alleged Bliss. It’s now 11:11 so here’s a wish: may everyone experience the highest of their dreams.
Even the Ex and The Governor.

I don’t believe in gods but I do believe in people.
Thank you to everyone who helped, and thank you to everyone who Liked the page which was envisioned by Trenton and set up by eLeM (Lisa-Marie). I love you. So I can love myself. Long time.

~Miss R

The Most Outlandish Tale About Anxiety and Depression Ever Told

 Wait wait, the story doesn’t start here!  This is a blog hop, people!High Anxiety Blog Hop
Click HERE to start from the beginning.

 

 

I stepped closer. “Whoa! Is that what I think it is?!”

The Cretin Brothers took a step back. Disbelief shown on their ugly faces. Reaching around in the purse my hand found my lipstick tube. I flicked it open and pepper spray hit both of the ugly Midnight Movers.
“Ooops”  I said.

My heart thudded as the immediate arresting thoughts slammed me:

  1. I’d forgotten to re-stock the Xanax in this purse
  2. The phone number for 911 had completely escaped my mind
  3. That tube of lipstick had better not be lost. Revlon discontinued that shade
  4. The portable charger was easy to find in my bag
  5. We’re gonna need a bigger boat

As the ugly stick kids gagged and wiped at their eyes I hobbled over to the item they’d dropped. Tears of gratitude welled in my eyes. Bending down I grabbed the extension cord and plugged it into the charger. In an utterly selfless act I aimed the rounded end of the object towards Tall Guy’s tuchus. With a mighty push on the wheels a glow and hum began to emanate from the missile shaped package. They suddenly understood. Mascara running down his cheeks, Tall reached down to grab his ankles.

Short dark and ugly stood by and watched as the A-Bomb shot directly towards his comrade’s backside “Oh dear Gods! It’s a giant…..

Click HERE to continue the story!

 

Transverse Myelitis: My Feet Are Baked Potatoes!

This is my story of Transverse Myelitis.
Hint: The floor is lava!

If you’re a regular reader -crickets- you know that on August 11th of last year I was diagnosed with a very rare spinal/neurological disease called Transverse Myelitis. ‘TM affects approximately 1 person in a million. Yes, I AM one in a million but that goes without saying.

House MD Vicodin ad

I’ll accept the Oxy instead. Thanks Doc

If you’ve never heard of Transverse Myelitis it’s not surprising. It’s the kind of thing Gregory House would diagnose.

My primary care doctor had never heard of it. A neurologist in a small or medium-sized city may come across one case in their lifetime. It’s a wicked disease with a sudden onset and 80% of the time no forewarning. If a TM sufferer does have severe unexplained weakness in their legs it can be shrugged off with ‘Jesus I need to get more exercise’ or if they pee themselves before getting to the toilet on two or three occasions consider ‘Fuck I’m getting old fast.’

Don’t ask me how I know this.

I was on disability for a completely unrelated illness before the TM onset. Usual story; A mild-mannered writer, musician, Veteran Burner of 8 years and dangerously fast downhill skier. Okay, not so much the mild-mannered.

One day I was running errands with a friend and slowly became disoriented.  I insisted on making a bank deposit. It was Sunday and no banks were open but why let reality get in the way of a swelling brain? My dear friend TK pulled up to a random building, gave a hobo $5.00, and pulled away from the curb back into traffic. Seems this cunning plan satisfied me. He then drove directly to the hospital. I opened the car door, and  stepped out. On to my face. Seemed my legs were no longer listening to my brain.
Next thing I remember is being in the emergency room with a morphine, then Fentanyl, drip. The pain was worse than:

  • a) 29 Hours of Labor and Childbirth
  • b) Passing a Kidney Stone As Big As The Ritz
  • c) Lumbar Fusion and Recovery
  • d) Rupturing Gallbladder
  • e) All of the Above. Combined

There was a barrage of questions which I answered cogently yet have no memory of. Followed by MRI’s, lumbar puncture, blood work and finally neurologists jacking me up with steroids. By the next morning I was paralyzed from the waist down. Screw that! During my two month hospitalization  I went from all wheelchair to sometimes using a walker in the halls, stopped drinking coffee with my forehead, and ditched the catheter. Unexpected and inopportune releases of natural gas still occur and I have to schedule bathroom visits to make sure my bladder isn’t full, but it beats the hell out of a colostomy bag!
The first two weeks in the hospital were also spent with psychosis and hallucinations. This was a side-effect of the steroids. Didn’t make many friends during that time. At one point I briefly came out of it and was chained, with what looked like dog leashes, to a wheelchair. Remember yelling about contacting attorneys, the police and possibly the Better Business Bureau.
Found out later that my restraints were there for my safety. Not the nurses. Whoa.

TM has other dandy symptoms besides paralysis. Chronic pain. Forever. Nerve damage that causes, in my case; electrical shocks, twitches, balance problems, overwhelming fatigue, nerve pain manifesting as molten lava running from hip to foot, ripping into the tops of my feet with what feels like a dragon’s claws. There are a host of bizarre and ever-changing indications. Hell, my blood pressure permanently dropped 20 points. Went from severely hypertensive and on Lisinopril to having an attention-grabbing low B.P. Told you that the cigarettes would never kill me.
I walk on stilts and my feet are baked potatoes.
Right? How the hell do you describe this shit.
In the future I look forward to brain lesions, respiratory failure -told you that the smoking would never kill me- and a possible slide into MS. The latter scares me as there are a few people in my Facebook support group who have faced it. We TMers wake up every morning not knowing what symptoms will occur that day. It makes us braver, more careful of our health, and perhaps a bit more neurotic.

The Grateful and Positive Scale:  I am NOT tied to a bag for the remainder of my life. The lesion is at C4 and my arms work pretty damn well. Bonus: I did not die within 48 hours of a misdiagnosis. Lots of people with TM are quads or remain permanently paralyzed from the waist down. Too many are not diagnosed quickly enough. The paralysis gets to the chest and they die of organ failure, gasping for breath,  before anyone realizes what has happened.
I’m one of the lucky ones. Two neurologists were on staff that night and both had treated a Transverse Myelitis patient.
It’s called Transverse Myelitis as the lesion crosses the spinal cord. The lesion transverses the spine. Myelitis is an inflammation of the spinal cord. For an unknown reason your immune system decides to attack and destroy the mylan (the sheath surrounding the spinal cord), instead of sitting in a corner or working itself up over a flu shot.

There's a Baked Potato Inside Each One

There’s a Baked Potato Inside Each One!

I had to leave my home in Nevada (because I shot a man in Reno, just to see him die), gave away more than half of my possessions, and moved in with -gulp/shudder/eeeek!- my mom. Life is lived in a small bedroom at the back of her house. I only get out for numerous doctor appointments, and now Physical Therapy. P.T. is awesome by the way. Painful, but awesome. The first positive feedback on a miraculous recovery that I received, from anyone, in 6 months, was from one of my P.T. therapists. He said I was serious and making great progress. Whoop!

Unfortunately there is no one in this town that I know. Can’t drive a car so it feels like I’m a prisoner. My boyfriend of 3 years came to visit me during the 5th week of my hospitalization, my legs were still paralyzed.  He said he’d met someone new.
Honestly, I wish I were dead most days.
Between pain and loneliness, being fairly certain that no man will ever want me again, and no longer having a home of my own, life can be a bummer. Okay it sucks.

It took six months for mom to admit that her eldest daughter would be mainly wheelchair-bound for the remainder of her life. My mom is awesome, but she’s the poster for ‘We’ll Simply Ignore it and it Will Go Away Syndrome’. Finally this week she took me to Cripples-R-Us, and we made the leap to reality.

Those bastards wanted $300.00 for the cheapest manual wheelchair model, on sale. Yeah right.
After getting back home I spent close to fourteen hours researching all kinds of chairs online. Actually found the one I test drove and ordered it yesterday. $166.00 fully assembled. I rock. Plus, there’s money left over to pay on the collection accounts with various physicians and hospitals, and two chocolate bars. 70% Dark with Sea Salt.
The chair should arrive on Tuesday. This has cheered me immensely today. I’ll do the daily at home P.T. regimen for the rest of my life, but there’s no way I will walk more than a few steps, with a serious gait weirdness. Can do about 5 minutes in the house, with the Cadillac (a cherry-red walker with brakes and a seat) before the pain skyrockets, feet go completely numb and legs give out.  You better believe I’ve been working it though. ANYTHING to get better and get my life back.

Still, there are situations that most everyone with a spinal cord injury faces. Mainly, I don’t know what the fuck I’m doing. Haven’t saved enough to afford the 20% co-pay for the power wheelchair prescribed by the neurologist. The nerve problems in my hands and arms sometimes cause them to cease functioning correctly. A manual chair is just fine with me now though.
Hey baby, can you give me a little push? -provocative wink-
Where do I go for help? Is there any? If it were not for my mother I’d be homeless. How many people do not have this opportunity? What happens to them? Questions pound my head every waking hour.

Worried about transportation in this very rural area. Worried about finding a place to live. Worried about a motorized wheelchair. I’m too young for everything from low-income senior housing (jesus that sounds depressing eh?) to meals on wheels.
How do I get to the barrage of doctor appointments that TM brings? They’re all in Folsom and El Dorado, a half hour drive. The neurologist, Dr. Mengle, sorry Dengle, is in Sacramento. An hour away.

Force my head to consider the progress and good things. Never did purchase AFO braces for my feet and legs.It’s too late now. I can stand on a foam cushion for 20 seconds, and once, on the floor with my feet together, eyes open, for a full minute.
The Lyrica helps with the electrical shocks and best of all I hardly ever twitch now. Words no longer fail me, unless it’s in response to a surreal utterance by my daughter.
Continue working on getting the pain meds balanced and fine tuned. Right now I’m a walking DEA raid. It’s gonna stay that way. Considering a large stock purchase in Milk of Magnesia.

Found a cool psychologist (makes a stylish bookend to the psychiatrist) here in Hangtown. He’s helped convince me to start a screenplay (been thinking of this for a few years) and use this to begin a new direction of life. As with the Transverse Myelitis, I DON’T KNOW WHAT THE FUCK I’M DOING! Learning though. Outlining the story, reading scripts, trying to take the director outta my head and remember my only job is to write. For now.
Beats watching Wheel of Fortune and eating Pringles all day.

Get Up. Get Out. Get Better.
Brilliant isn’t it?
These are the words of Lynne Murray, the nifty guy who rolled up and introduced himself to Sandy and I a few weeks ago, as we sat sipping coffee and making a scene at the Cozmic Cafe. Lynn heads a group called the Placerville Mobility Support. There are meetings the 4th Monday of each month. I can hardly wait.

TM sexy~Miss R

Transverse Myelitis: My Feet Are Baked Potatoes!

This is my story of Transverse Myelitis.
Hint: The floor is lava!

If you’re a regular reader -crickets- you know that on August 11th of last year I was diagnosed with a very rare spinal/neurological disease called Transverse Myelitis. ‘TM affects approximately 1 person in a million. Yes, I AM one in a million but that goes without saying.

House MD Vicodin ad

I’ll accept the Oxy instead. Thanks Doc

If you’ve never heard of Transverse Myelitis it’s not surprising. It’s the kind of thing Gregory House would diagnose.

My primary care doctor had never heard of it. A neurologist in a small or medium-sized city may come across one case in their lifetime. It’s a wicked disease with a sudden onset and 80% of the time no forewarning. If a TM sufferer does have severe unexplained weakness in their legs it can be shrugged off with ‘Jesus I need to get more exercise’ or if they pee themselves before getting to the toilet on two or three occasions consider ‘Fuck I’m getting old fast.’

Don’t ask me how I know this.

I was on disability for a completely unrelated illness before the TM onset. Usual story; A mild-mannered writer, musician, Veteran Burner of 8 years and dangerously fast downhill skier. Okay, not so much the mild-mannered.

One day I was running errands with a friend and slowly became disoriented.  I insisted on making a bank deposit. It was Sunday and no banks were open but why let reality get in the way of a swelling brain? My dear friend TK pulled up to a random building, gave a hobo $5.00, and pulled away from the curb back into traffic. Seems this cunning plan satisfied me. He then drove directly to the hospital. I opened the car door, and  stepped out. On to my face. Seemed my legs were no longer listening to my brain.
Next thing I remember is being in the emergency room with a morphine, then Fentanyl, drip. The pain was worse than:

  • a) 29 Hours of Labor and Childbirth
  • b) Passing a Kidney Stone As Big As The Ritz
  • c) Lumbar Fusion and Recovery
  • d) Rupturing Gallbladder
  • e) All of the Above. Combined

There was a barrage of questions which I answered cogently yet have no memory of. Followed by MRI’s, lumbar puncture, blood work and finally neurologists jacking me up with steroids. By the next morning I was paralyzed from the waist down. Screw that! During my two month hospitalization  I went from all wheelchair to sometimes using a walker in the halls, stopped drinking coffee with my forehead, and ditched the catheter. Unexpected and inopportune releases of natural gas still occur and I have to schedule bathroom visits to make sure my bladder isn’t full, but it beats the hell out of a colostomy bag!
The first two weeks in the hospital were also spent with psychosis and hallucinations. This was a side-effect of the steroids. Didn’t make many friends during that time. At one point I briefly came out of it and was chained, with what looked like dog leashes, to a wheelchair. Remember yelling about contacting attorneys, the police and possibly the Better Business Bureau.
Found out later that my restraints were there for my safety. Not the nurses. Whoa.

TM has other dandy symptoms besides paralysis. Chronic pain. Forever. Nerve damage that causes, in my case; electrical shocks, twitches, balance problems, overwhelming fatigue, nerve pain manifesting as molten lava running from hip to foot, ripping into the tops of my feet with what feels like a dragon’s claws. There are a host of bizarre and ever-changing indications. Hell, my blood pressure permanently dropped 20 points. Went from severely hypertensive and on Lisinopril to having an attention-grabbing low B.P. Told you that the cigarettes would never kill me.
I walk on stilts and my feet are baked potatoes.
Right? How the hell do you describe this shit.
In the future I look forward to brain lesions, respiratory failure -told you that the smoking would never kill me- and a possible slide into MS. The latter scares me as there are a few people in my Facebook support group who have faced it. We TMers wake up every morning not knowing what symptoms will occur that day. It makes us braver, more careful of our health, and perhaps a bit more neurotic.

The Grateful and Positive Scale:  I am NOT tied to a bag for the remainder of my life. The lesion is at C4 and my arms work pretty damn well. Bonus: I did not die within 48 hours of a misdiagnosis. Lots of people with TM are quads or remain permanently paralyzed from the waist down. Too many are not diagnosed quickly enough. The paralysis gets to the chest and they die of organ failure, gasping for breath,  before anyone realizes what has happened.
I’m one of the lucky ones. Two neurologists were on staff that night and both had treated a Transverse Myelitis patient.
It’s called Transverse Myelitis as the lesion crosses the spinal cord. The lesion transverses the spine. Myelitis is an inflammation of the spinal cord. For an unknown reason your immune system decides to attack and destroy the mylan (the sheath surrounding the spinal cord), instead of sitting in a corner or working itself up over a flu shot.

There's a Baked Potato Inside Each One

There’s a Baked Potato Inside Each One!

I had to leave my home in Nevada (because I shot a man in Reno, just to see him die), gave away more than half of my possessions, and moved in with -gulp/shudder/eeeek!- my mom. Life is lived in a small bedroom at the back of her house. I only get out for numerous doctor appointments, and now Physical Therapy. P.T. is awesome by the way. Painful, but awesome. The first positive feedback on a miraculous recovery that I received, from anyone, in 6 months, was from one of my P.T. therapists. He said I was serious and making great progress. Whoop!

Unfortunately there is no one in this town that I know. Can’t drive a car so it feels like I’m a prisoner. My boyfriend of 3 years came to visit me during the 5th week of my hospitalization, my legs were still paralyzed.  He said he’d met someone new.
Honestly, I wish I were dead most days.
Between pain and loneliness, being fairly certain that no man will ever want me again, and no longer having a home of my own, life can be a bummer. Okay it sucks.

It took six months for mom to admit that her eldest daughter would be mainly wheelchair-bound for the remainder of her life. My mom is awesome, but she’s the poster for ‘We’ll Simply Ignore it and it Will Go Away Syndrome’. Finally this week she took me to Cripples-R-Us, and we made the leap to reality.

Those bastards wanted $300.00 for the cheapest manual wheelchair model, on sale. Yeah right.
After getting back home I spent close to fourteen hours researching all kinds of chairs online. Actually found the one I test drove and ordered it yesterday. $166.00 fully assembled. I rock. Plus, there’s money left over to pay on the collection accounts with various physicians and hospitals, and two chocolate bars. 70% Dark with Sea Salt.
The chair should arrive on Tuesday. This has cheered me immensely today. I’ll do the daily at home P.T. regimen for the rest of my life, but there’s no way I will walk more than a few steps, with a serious gait weirdness. Can do about 5 minutes in the house, with the Cadillac (a cherry-red walker with brakes and a seat) before the pain skyrockets, feet go completely numb and legs give out.  You better believe I’ve been working it though. ANYTHING to get better and get my life back.

Still, there are situations that most everyone with a spinal cord injury faces. Mainly, I don’t know what the fuck I’m doing. Haven’t saved enough to afford the 20% co-pay for the power wheelchair prescribed by the neurologist. The nerve problems in my hands and arms sometimes cause them to cease functioning correctly. A manual chair is just fine with me now though.
Hey baby, can you give me a little push? -provocative wink-
Where do I go for help? Is there any? If it were not for my mother I’d be homeless. How many people do not have this opportunity? What happens to them? Questions pound my head every waking hour.

Worried about transportation in this very rural area. Worried about finding a place to live. Worried about a motorized wheelchair. I’m too young for everything from low-income senior housing (jesus that sounds depressing eh?) to meals on wheels.
How do I get to the barrage of doctor appointments that TM brings? They’re all in Folsom and El Dorado, a half hour drive. The neurologist, Dr. Mengle, sorry Dengle, is in Sacramento. An hour away.

Force my head to consider the progress and good things. Never did purchase AFO braces for my feet and legs.It’s too late now. I can stand on a foam cushion for 20 seconds, and once, on the floor with my feet together, eyes open, for a full minute.
The Lyrica helps with the electrical shocks and best of all I hardly ever twitch now. Words no longer fail me, unless it’s in response to a surreal utterance by my daughter.
Continue working on getting the pain meds balanced and fine tuned. Right now I’m a walking DEA raid. It’s gonna stay that way. Considering a large stock purchase in Milk of Magnesia.

Found a cool psychologist (makes a stylish bookend to the psychiatrist) here in Hangtown. He’s helped convince me to start a screenplay (been thinking of this for a few years) and use this to begin a new direction of life. As with the Transverse Myelitis, I DON’T KNOW WHAT THE FUCK I’M DOING! Learning though. Outlining the story, reading scripts, trying to take the director outta my head and remember my only job is to write. For now.
Beats watching Wheel of Fortune and eating Pringles all day.

Get Up. Get Out. Get Better.
Brilliant isn’t it?
These are the words of Lynne Murray, the nifty guy who rolled up and introduced himself to Sandy and I a few weeks ago, as we sat sipping coffee and making a scene at the Cozmic Cafe. Lynn heads a group called the Placerville Mobility Support. There are meetings the 4th Monday of each month. I can hardly wait.

TM sexy~Miss R