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

A Banner Sunday

Hey there. It’s raining outside. the music library is on shuffle, and I’m taking a break. Just ready to sort out the coming week’s medications, vitamins and assorted supplements. Don’t know why I crave any actual food after choking all of this crap down each day.

Notice the new YoYo-Dyne banner? Cool isn’t it? Adam over at Chowderhead offered to design a banner for the first 25 readers that snapped up his offer. Being adroit at finding all things cheap (see ex-boyfriend) Adam’s offer couldn’t be passed up. You can see ALL of the nifty banners he designed at the above link.

For those of you unfamiliar with YoYo-Dyne, here’s a quick question.
Have you ever watched Buckaroo Banzai? You know, origin of the oft-used phrase ‘no matter where you go, there you are’? If you’re familiar with this 80′s fan classic then you’re okay. No admission fee for You.
But wait! There’s another way you can sneak in under the big-top canvas. Perhaps you’ve read The Crying of Lot 49 by Thomas Pynchon? You’ll see YoYo-Dyne Propulsion Labs show up there for the very first time. Earl Mac Rauch, who wrote the screenplay for Buckaroo, lifted Pynchon’s mythical Rockwell/Boeing/Hughes Evil Giant Corporation (because that could never happen right?) for amusement purposes. An in joke for a very small number of fantasy genre readers.

It wasn’t until I’d begun tossing around the YoYo-Dyne name in various stories, graphics and conversations that The Crying of Lot 49 became a beloved fixture on my own bookshelf. If you get the chance, read it. Almost a novella, it is not a long read. You’ll find a slew of 1960′s pop references, all cleverly and amusingly disguised, in The Crying of Lot 49. Pynchon will take you on your own treasure hunt.
But this one is mine.

Dammit, another movie entirely

Dammit, another movie entirely

So I started to dig around a bit to see if anyone else had been using and happily abusing the Lectroids and Lord John Whorfin. The latter were all running about the YoYo-Dyne warehouses last I heard, screaming something about Planet 10.

I already knew that the YoYo-Dyne name was unavailable in any url form I wanted. Tried to lock down that baby 15 years ago. Someone I worked with at The WB mentioned that she’d seen a YoYo-Dyne Hair Salon, or Hair Something, in one of the Dakotas. Weird but cool.
My own contribution is this blog, and a Facebook page. Listed my employer on FB as YoYo-Dyne Propulsion Systems: Reno Div, Location, Grover’s Mill, N.J.
In the infinite wisdom of Mark Zuckerberg it seems that by collecting 25 ‘Likes’ your page is considered a viable location. Believe it has over 85 members now, and perhaps 15 or so are friends of mine.
My current position, listed on my personal FB page, is CEO, Writer and Fellowship Chair of Banzai Physics. I have a real employer now, YoYo-Dyne Propulsion, that comes up on the link. It must be true.

Found that there was a reference to YoYo-Dyne Propulsion on an old show called Angel, which was a spin-off of Buffy The Vampire Slayer.
Seems ABC referenced YoYo-Dyne on a website for a fictional company named PB-Sales. The site was created for the television show Lost. PB-Sales supposedly owned not only YoYo-Dyne but GeoComtex; a Company owned by Van Stratton from Dr. Who. The site’s gone now, but my fangirl neurosis cannot be quelled.

Doctor Who Rules My World

The Doctor is IN

We’ve gone through enough pointless history on YoYo-Dyne Propulsion systems that my ears have been treated to Madness, Zero7, Ella Fitzgerald, Ben Folds, Wagner and The Format. I’d die without music.
It’s all that’s left. My beautiful concert grand is in Reno, on consignment at a retail music store.
I tried to play one more time before it was dismantled and taken from my home. Still had hands like claws, so even a slow rendition of Scott Joplin’s Solace wouldn’t come.

Now I keep music, books and movies close. Buckaroo Banzai Across the Eight Dimension and John Cale singing Hallelujah, Princess Bride and Gogol Bordello. Tom Woodrell speaks to me while Kings of Leon sing Pyro.

A good friend pointed out that life is a spiderweb. Everything is interconnected. I don’t believe we’re separated by 6 degrees, but we may be 3 strands from understanding.

So that’s all I have to share today. Buckaroo Banzai is available on Netflix streaming again. Even if you don’t love the movie the end title sequence is a gem. Never seen anything like it before or since. The only versions of the credits on YouTube are a mess. Eh, get up and haul your ass over to the TV. It’s worth 90 minutes of your time to check out Peter Weller, John Lithgow, Jeff Goldblum and a cast of Lectroids in one of my fave little films.

At least you’ll understand why YoYo-Dyne Propulsion Systems: Reno Division has been invaded by aliens. Time to get back to the pills and my Fresca. The hands are getting better, so cross your fingers. I feel some ragtime creeping into my soul. It really is a banner Sunday.

                  Laugh while you can Monkeyboy!

Buckaroo Banzai Beyond the 8th Dimension

Shot from the End Credits

 ~Miss R: Fangirl Geek or Eccentric Human? Poll next week.

Owner of an original Buckaroo Movie Poster, Two original BB coffee mugs -still in use and unbroken, a shooting script (photocopy) signed by Earl Mac Rausch (not photocopy), a BB studio promo button and of course memories of the first time I saw this film: in New Jersey with friends on the night it was released. The audience stood and gave the flick a standing ovation. Not something you come across much anymore

Hooray For Hollywood

HollywoodHollywood by Charles Bukowski

The Rachael Rad Rating : 5 of 5 stars

I loved this book. See a lot of ‘eh’ reviews. Have no idea if it’s my own involvement in film, writing and Los Angeles of the past that makes this tale a spark of real life. I believe it’s the writing alone that does it.
This is Bukowski as Bukowski, not ‘Hank’.

‘Hollywood’ was and still is a pleasure to read. A must have for any screen writer, rags to riches bum, alcoholic literary being, or the real reason to read Buk or Fante.. The Clean Line.

It’s the story of ‘Barfly’ (a Bukowski book) and the making of that film. It starred Mickey O’Rourke. Bukowski had such a wonderful time seeing the project through and it shows in this work. It is a peek into the real life of an icon.

Some people never go crazy, what  truly horrible lives they must lead
Seems readers either love him or hate him. I met him in a bar, in Long Beach in the very early 80′s, and thought that he was a consummate asshole.
Based on a personal experience I refused to read any more of his work and filled myself with righteous indignation.
What an ass. Me. Not Buk.

The man could write. I feel that Bukowski is one of the Top 5 Best Writers of the 20th Century. His words could immediately sabotage the happiest fool, punch your lights out with the measure of anger at society, and stun you with his graphic and street-level view of humanity, and heighten your mind to poetic grace with his insights. Within the same piece all of these textures could be transfused. You loved with his heart and so hurt with his hurt.
He enjoyed doing live readings with a cooler on the stage next to him. Woe be to a heckler or someone foolish enough to speak too loudly. It’s true. Beer cans can fliy.

Hollywood is a personal story, filled with the real feelings and observations of an author finally revered for their work. Finally taken seriously. Finally able to let his personal side and thoughts of his life come out. It is quite different from any of his other writings. Well, so was Pulp. Pulp however… was truly the ‘eh’ Bukowski.

And Our Musical Selection For This Evening

Currently Listening:  Hollywood Madness

By:
Richie Cole
From:
The Rad Rachael Original Signed Vinyl Stack

Richie Cole: Hollywood Madness

Richie Cole plays an amazing, high energy, gorgeous alto. It’s scary-cool pure synchronicity that a sneaky little subconscious slapped this on the turntable while writing the Bukowski review.

First time I heard Richie I thought “Damn, this guy can blow.. and he’s white!” Couldn’t believe I hadn’t heard him play before. He was an L.A. fixture and his style is the combination of his be-bop roots, and late 70′s and early 80′s fusion. Richie Cole has added his raucous and heavenly talents to other musical acts ranging from Buddy Rich to Manhattan Transfer. That’s a lot of years and genres.

These were the days when my radio tastes went from punk to jazz. Oddly I could never get my punk rock friends interested in Sonny Rollins, Richie, Stanley Turentine or Weather Report. Conversely, the Jazz contingent would never end our nights with a stellar a cappella rendition of Beat on the Brat With A Baseball Bat.
Met Richie at the Queen Mary Jazz Festival in 1982 or ’83. Cool cat. Down to earth and a smile as big as the Ritz. We had a few beers and talked music, and life. Met up with him again at another festival in the early 90′s.

Holy Shit Batman. Age and drugs had taken a toll. No, his entire wallet.
Heard him play then later hit an after-party at a friend’s house. Richie sat alone on a couch, towards the back of the cluttered living room. Naturally I made a bee line and plopped the ass down beside him.
Couldn’t believe that nobody else at the party was in line to shake his hand. He lit up a doob and we smoked and people watched for a while.
Mentioned that I had talked with him before. He remembered me, or at least said he did. Which was nice.
His name, and remarkable style, had faded by 1994.
It was a comfortable chat and I’ll always remember the way it felt in that room. The cigarette smoke, a fire in the old stone fireplace, musicians aplenty, a very faint smell of spilled beer in old carpet, and the quiet peace of smoking a joint with a good friend. Maybe that was it. He wasn’t a long time friend, but he made me feel that way. Left the party and took Richie’s number with me, he took mine as well. A happy ‘I’ll call you when I’m back in town’ and that was the last time I saw him.

Heard later he’d been in and out of rehab for heroin. Same drug that clipped the wings of Bird. It explained his deteriorated appearance.
Never saw Richie again, but I’ve kept his albums through all the years of marriages, divorces (Divorce: noun. Meaning ‘to lose your favorite music.’) and cross-country moves.

Bukowski and Richie Cole are two great examples of my Hollywood. As a L.A. kid, New York City grown-up, Reno, Nevada hell-if-I-know, the memories of my original home and experiences are still easily stirred. Think it’s the same for anyone with a bit of dreamer inside.
A sight, a bar of music, a phrase on paper, can fill our souls with a spate of emotions.
Can’t think of a better reason to elicit Hooray for Hollywood.

~Miss Noir