Sugar Sweet

Pause

2011-09-11T05:46:00.002-04:00

Mock the Cripple

2011-08-29T10:02:00.000-04:00

Well, CL has finally done it. No, she has not entered the Miss America pageant, nor has she decided to "road trip!" Canada. Those would have been sane, rational decisions. Instead, she has finally started that blog she has been pondering, mentioning, grumbling about for over a year. And do you know what she calls it?

Mock the Cripple

It could be a fabulous, eventful, exciting look into her odd little brain. Or, it could be an epic fail. You will only know if you decide to check it out...;-)

Jungle Madness

2011-08-08T11:54:00.001-04:00

20 feet, and growing...

Wordless Wednesday

2011-08-03T05:38:00.001-04:00

So long, Mohawk Man

2011-08-02T13:59:00.000-04:00

Duncan has found a Forever Home! CL is missing the little dude:

Me? A bit. At least I have some quiet time to contemplate life and guard the 20+ foot sunflowers.

p.s. Can you guess what we were staring at, while gazing out the window in the first picture?

Yep. Fresh meat!

Corn! Greens! Beans! Squash! Watermelon!

2011-07-04T11:16:00.000-04:00

(already, CL has begun harvesting salad greens, coriander, parsley, basil, chard and summer squash...she has counted over 30 corn silks, 50 squash, 12 heads of lettuce and 100 beans! and the sunflowers have busted through the 7 foot nets...me? no vermin has entered the garden, thanks to my mad huntress skills...7 dead moles, 2 dead gophers, and at least 20 dead field mice encompass my current body count)

The perfect ambassador for dawg-kind

2011-06-23T16:05:00.001-04:00

CL has had a rough couple of weeks. She came home from an early morning doctor's appointment and promptly fell asleep in front of her computer. Check out the face that greeted her, when she woke-up:

I keep telling her, "Us dogs? We have magic healing powers-- even Duncan has learned that you need a special cuddle during hard times!"

Like many folks (myself included), CL finds it hard to believe that Duncan has not been snatched by a loving and welcoming Forever Family. Just look at this face...

I know a special family is out there, waiting to adopt this fabulous ambassador for dawg-kind.

Wordless Wednesday

2011-06-22T00:59:00.001-04:00

The Bromance Continues

2011-06-16T16:52:00.000-04:00

Mohawk, baby

2011-06-14T00:49:00.002-04:00

(just ignore the bee-hind in the background, please...one of these days, CL, one of these days you will turn your back and...)

Tug

2011-06-13T00:08:00.000-04:00

The winner is...

At least he lives to fight another day...

double trouble

2011-06-11T20:06:00.000-04:00

Why me?

2011-06-11T14:28:00.001-04:00

She-Ra, Princess of Power

Loo-Kee the trusted Conceal

And-- wait! What's this?

Yeah, another one. He's not a foster, but one of the poodles from CL's next door neighbor. We have him for 10 days. Sigh. Does no one respect the alpha bitch in this household? Slap some wings on this little yapper and we have Kowl crashing in my home:

CL is smitten, though. His name is Bodi, and he is quiet, playful, cuddly and has a hot bromance going on with Duncan, the traitorous manwhore. At least Bodi has some mad "kill skills..."

Gotta respect the hunter in this dude.

Best dog evahhhh (except for me, of course)

2011-06-09T13:06:00.000-04:00

CL never lets a dog off leash-- even supervised-- until we respond to the "come" command. She'll test and test (and test) the dog. We must listen to her, regardless of the situation. Can we see her? No? Tough-- get your bee-hind back to her wheelchair pronto. Squirrel? Bird? Some odd little beasty is luring us away? Double-tough. We must immediately come, as soon as we hear her voice. This is especially important since CL lives life in her wheelchair, and running after an escapee is not a good option.

Before Duncan, it would take weeks until CL felt comfortable enough to let a foster dog off leash. In some situations, they never leave the tie down or leash. For the first time since I entered her life, CL has found a dog that has learned to "come" within 48 hours. Seriously. We are even starting to use hand signals- something CL doesn't introduce until week 3 or 4. Check it out...

This video was taken 2 days after Duncan arrived in our home. Pretty amazing, huh?

"Hey! I can sit and play!"

2011-06-07T09:41:00.000-04:00

(You might be able to "sit" and play with me, but CL still says that I am "the best!" Take THAT, little dude!)

preciousssssss

2011-06-06T16:13:00.000-04:00

CL is amazed-- this is the first Yorkie she has ever met that does NOT suffer from "small dog syndrome."

No incessant whining, yapping, snapping and possessiveness. Duncan prefers the company of dogs over the company of humans. In less than 24 hours, he is accustomed to the crate, has learned to pee and poop outdoors (his current belly band is "just in case...") -- and, he "sits" on command! Seriously. It took CL 5 minutes to teach Duncan how to sit. This dude is almost as intelligent as moi.

Of course, I still show him who's the boss...

Doggy Swap

2011-06-05T22:57:00.001-04:00

Juju has left our home to stay with Judy at Walkin' the Bark Rescue. So long, fabulous playmate...

Why did he leave? Well, it had nothing to do with his behavior. He is an awesome dog. Under the tutelage of CL, Nick, Miss J and myself, Juju learned to "sit," "come," pee outside (always a good thing, huh?), play with doggies of all shapes and sizes, and kindly welcome strangers into our home. It was time for Judy to find him a forever home, however, and for us to welcome a new little pup who needed a place to stay. Meet Duncan...

Keep checking my blog for upcoming adventures with "Mo Mo Mohawk" Duncan. Our household is looking forward to teaching him "mad skills" and finding him the perfect forever home. Personally, I can't wait to show him my amazing snake hunting-and-burial techniques. (4 kills in 7 days! CL is not pleased...heh.)

Wackadoodle Wednesday

2011-05-18T14:16:00.000-04:00

Cripple's Garden

2011-05-12T14:02:00.000-04:00

If you look closely, you'll notice that a sign says "Cripple's Crawl-way." It officially names the path which divides the garden, so CL can crawl in between the rows of goodies. She uses Yoga mats on the path, to cushion her body and prevent sores and bruises. The logs help irrigate the area, and allow for CL to sit down. The netting stops vermin from pilfering the corn, beans, tomatoes, greens, watermelon, squash, carrots, etc...

CL calls this "occupational therapy."

Once this garden lures Bambi to the scene? I will call it "lunch."

Possession

2011-05-10T11:38:00.000-04:00

(yep, the "obnoxious whining" is coming from my mouth...)

Playful Pups

2011-05-07T15:27:00.001-04:00

(CL captured this moment while she was doing her morning exercises inside the house. The quality is poor, but the sweetness of our play was too good to miss...)

(...and time to rest...)

ZEN

And, the hunt begins...

2011-05-02T13:33:00.000-04:00

In less than 2 hours, I have taught this newbie the "power of the hunt" for those demon spawns (aka squirrels):

Of course, I reserve the right to roll around the freshly dug grave:

You? Keep chompin' those bully sticks, sweetness...

...maybe, if you're good, I'll let you munch the tail.

So long, farewell...WAIT. What's this?

2011-05-02T11:15:00.000-04:00

Max has found a Forever Home, and he has settled into his new dogs (um, digs, I meant digs...). He has left the wondrous zoomies on CL's wheelchair:

And, he is missing the fabulous attentions of moi:

But, Max has new friends and a Forever Family.

And, I have resumed my peaceful existence-- until this morning. Meet our new foster dawg:

Yep, for those who follow Walkin the Bark's blog, we have a new foster... JuJu! He's a mellow dude, so far. I'll give him 24 hours to settle in, before I start my She-Ra Alpha moves. You've been warned, JuJu...

(insert evil dawg laugh here)

The Miracle of Foster Care

2011-04-11T11:21:00.000-04:00

Remember this picture of Max, taken while he was on the "kill list" in an overcrowded Bakersfield shelter just over 2 weeks ago?

And, what about this photo, taken during his rescue mission and final transport to our home?

Well, check out the picture my foster mum posted on Popeye's Facebook page:

And, just look at this video taken of Lord Maxwell while he plays with MY FRIENDS over the weekend:

CL is-- for once-- speechless. Max' transformation to a healthy, happy, adoptable dog waiting for his forever home? Simply amazing. CL knew that she could never foster a big (or even medium sized) dog because of her physical challenges-- but, wow, she is happy that we decided to try and foster the little ones. First, we had Pip. Now, we have Maxwell. CL feels blessed that people like Judy (with Walkin' the Bark Rescue) were willing to take a chance on us and work around CL's limitations. I suspect there are many more rescues, in our future.

Meanwhile, Lord Maxwell has returned to his temporary castle, and I am enjoying my dominance exercises.

Happy Monday!

ZEN (the early days of training)

2011-04-11T03:50:00.004-04:00

Overheard

2011-04-10T13:35:00.000-04:00

(Note: Since CL wrote this tidbit, Max has had a very successful sleepover at my ole foster mum's home. It was his first adventure in an unfamiliar home since Max has joined our household, and CL was worried that he would regress to his "wicked ways." My foster mum reports that "all went well," however, and the training is working. Whew! CL believes that Max will make a wonderful addition to some lucky, high energy family.)

CL: Hello? Oh, hi, how are you?

(pause)

CL: Yes, there's a new dog next door. Yes, he's fine. He's up for adoption-- do you want him?

(laughs)

CL: What time did you hear the squeaking, yelping, wooing?

(pause)

CL: How long?

(pause)

CL: Oh, that's okay, it was only for a couple of hours in the afternoon. I was home. He was fine, not hurt. I was just working on his separation anxiety. I don't like using the crate for this kind of training, so he was tied to the apple tree outside.

(pause)

CL: You were home sick and trying to sleep? Okay, sorry about that. Next time, just yell "tell the mutt to be quiet!" over the fence...uh huh, what was I doing to make him cry in torment for 2 hours? You know, general stuff-- getting the mail, taking Sugar for a walk, going to the bathroom...

(pause)

CL: How does it help the separation anxiety? All that "You're so special, I will feed you at the table and carry you in my purse" crap has caused this problem. He's not to blame. When I return from my little trips, I ignore him. He's nothing to me, nada, no eye contact, no "oh poor baby" sounds. Once he stays quiet and settles down, I give him a small pet and say "good boy." I don't overdo the niceties.

(pause)

CL: Cruel? Me? Yeah, I guess so. He needs to understand that his incessant whining does not provoke a response, that I'm immune to his powers-of-cuteness.

(pause)

CL: Does it work? Yeah, it works. Ever since the intensive training you overheard, Max can stay tied to the apple tree without whining, even when I get the mail or go inside. He no longer freaks out when I turn on my wheelchair, an anxiety-trigger for him since it meant I was leaving. I can pee without his yelping in pseudo pain...sorry that you were home during yesterday's training, though. That sucks. Hope you feel better soon. Let me know if you need anything.

(hangs-up phone and looks at me)

CL: That was the neighbor-- you know, the one with the yapping poodles that she carries in her purse, everywhere she goes? I guess Lord Maxwell's incessant whining during Monday's training was keeping her awake. Too bad she was feeling sick-- otherwise, I would say it was karmic justice, given the number of times her yapping poodles have given me migraines.

Jumpin Jack-A-Poo!

2011-04-05T14:17:00.000-04:00

Once of the challenges with Max is his amazing capacity to jump and kiss your nose, hop a fence, latch onto your hair and clean your scalp (seriously). If it is done on-command, CL has no problem with the behavior. If it's done without the "okay" from She Who Must Be Obeyed? Not good. Here's what usually happens:
Max: "I love you, I love you, I love you, you are the BEST HUMAN EVER."

Max (2 second later): "I want to eat your nose! YUM!"

I have an amazing friend (Master Nick, he's the young dude in the pictures) who lives next door and visits four times a week. He helps CL feed, walk and take care of me. During his recent visits, he has been working with Max on training. (Max is wonderful with children, especially a high energy 8-year-old!) To date, Master Nick has taught Max to sit, lay down and walk on a leash. Lately, he has been working on Max' need to jump. The method is easy:
Every time Max starts to jump, Master Nick turns his back and ignores him. Once Max calms down, Master Nick turns around and gives the jumpin' Jack-A-Poo positive reinforcement (aka LOVE) for the calm and gentle behavior.

Check out the results, so far:

Pretty cool, huh?

Die, evil one! Die! (and a quick update on CL's health)

2011-04-03T14:51:00.000-04:00

(if you look closely, you will see a replicate of Pip's cheap date...)

Some folks have asked CL, "Why the tie downs? Why not let Max roam free?" Max is allowed at least 3 off leash sessions in the yard, during the day. In between those moments, he spends time in his crate, tied to the wall, or connected under the apple tree. He has "issues," most notably a 30 second attention span and the ability to escape and eat ANYTHING (including the power cords on her $18,000 motorized wheelchair...). When he had first arrived, CL could not take a pee without incessant whining and barking, aka the "Max meltdown." Prior to our care, Max had no training and he was used to life as a "lap dog," where he was fed from the table and carried everywhere. (Ah yes, CL has very little patience with people who treat dogs like infants...) When she left the house for 5 hours, he yelped, whined and barked the entire time (according to a very understanding neighbor who has many yapping poodles). The second time Max was allowed off leash? It resulted in an amazing escape attempt-- he climbed a 5 foot chain linked fence, using all 4 of his paws. When CL thwarted the climb*, he tried to sneak under the 1 inch gap, getting trapped in the wires.

So, um, yeah...life. Because of these challenges, Max' life has become predictable, structured, and rule-driven. Slowly, as he becomes calmer and gains more focus, he will be given more "free to roam" time. He has made some amazing improvements-- he's 100% crate trained and house-trained; he no longer fights the tie downs; he has no longer tried to escape during his "free time" (knock wood); and he has stopped chewing the wires on CL's wheelchair. When CL leaves, he spends 5 minutes barking and whining-- then, he calms down. CL can take a shower, go to the bathroom and get the mail without a "Max meltdown." Woo hoo!

With his high energy and incredible smarts, Max will make an amazing dog for the right forever family.

* Thank dawg CL has started using the bosu ball during daily exercises. One of her biggest challenges with walking is that she can not tell the position of her feet (she has proprioceptive impairment and no feeling in her feet). Sometimes, her brain actually believes that her feet have disappeared! Kaiser designed an in-home physical therapy program that helps her maintain range-of-motion and muscle strength-- but, they insisted that there was nothing that could be done to help her with balance and feet positioning, except to watch herself in a mirror while moving her feet. The Kaiser rehab doctor even went so far as to tell CL, "I guess Yoga will help you stretch, but there's no evidence it will help you with positioning and balance." Four months ago, CL expanded her horizons and started working, remotely, with UW-Seattle, Boston and the Reeves Foundation. She learned that Spaulding Rehab had created a successful swim program for quadriplegics (because, yes, Kaiser built a pool for rehab and NEVER FILLED IT WITH WATER-- oh boy, don't get CL started on those frackers...) Hmmm...where was I? Um, yeah, Spaulding...they also developed bosu ball exercises for her proprioceptive impairment, and they work! CL will never be able to walk more than 175 feet; but her balance has improved and she can "stand tall" without falling, for up to 5 minutes. (Much better than the 40 seconds of stand-without-falling, before the bosu ball). Yoga, the bosu ball, and CL's innate stubbornness have given her more joie de vivre...and, of course, have enabled her to thwart Max' escape attempts!

What price beauty?

2011-04-02T11:28:00.000-04:00

Cut, swabbed, brushed, waxed, expressed-- yech!-- snipped...

...and the joy of watching the Queen de-shedded...heh.

yours,
Lord Maxwell

ZEN

"Dude, don't stop until you reach Taiwan!"

2011-04-01T00:43:00.002-04:00

ZEN or Zeitgeist?

2011-03-31T20:57:00.001-04:00

You decide...

The Colbert Report

Mon - Thurs 11:30pm / 10:30c

Difference Makers - Roy Den Hollander

www.colbertnation.com

Colbert Report Full Episodes

Political Humor & Satire Blog

Video Archive

"That's Lord Maxwell, if you please..."

2011-03-31T11:03:00.000-04:00

(Max may think he is Lord of the Manor, but we know the Queen rules ALL...)

Max the POO Dog!

2011-03-28T12:20:00.000-04:00

This weekend, a new foster dog arrived on our doorstep. He started his travels in a Bakersfield shelter:

The last leg of his journey found him with the fabulous Judy, foster mum extraordinnaire:

You can learn more about his transport and arrival here. The current pit stop is my home:

As you can tell from the video, we've named him Max (aka Maxwell) and he is loving, smart, fast, wicked-fun and has an obsession with shoes. We suspect that he is a Jack Russell Terrier and Poodle mix, otherwise known as a Jack-a-Poo. (Poo-dog. Hehe. Almost too easy...) CL already believes that he will be an outstanding agility dog. Me? I'm just looking forward to thwarting CL's exercise regime with early morning antics!

p.s. Why Maxwell? He reminds CL of her favorite war rat from her Delores/Hannah YA Fantasy trilogy:

(sigh...horror authors...I almost feel sorry for Max...)

Meet my long lost twin!

2011-03-22T16:13:00.001-04:00

It's no surprise that she can ride a bike-- FMD females are smart hussies!

The report is still out on the males, however...seriously, would a female FMD allow this? Or, hold still for this picture?

Ah, Wild Dingo...we know we can visit you at Wilddingo.com, any day or night-- but we miss your local antics...!

tik tok, trekkie style

2011-02-27T23:51:00.002-05:00

tiny tot tyranny

2011-02-15T14:00:00.000-05:00

Evil consumes Winnepeg

2011-02-01T10:07:00.000-05:00

(for my friends in Canada, here's the adoption link. I recommend dogs for live-in, cats for those with demon issues, and bunnies for snacks...)

No rest for the wicked

2011-01-28T22:48:00.001-05:00

(Thanks, Wild Dingo-- there's nothing like a wicked workout to reduce our junk in the trunk...)

Personalize funny videos and birthday eCards at JibJab!

Wordless Wednesday

2011-01-26T13:50:00.001-05:00

(Remember Pip's cheap date? Well, here's a picture of Pip hugging that old sock, as he enjoys bonding time with his new family...)

ZEN

To bask in the glory of a sunny afternoon

2011-01-23T16:40:00.000-05:00

(Right now? I do not miss Cambridge. CL insists, though, that Denver has moments like these, in between the blizzards...)

Just. Wrong.

2011-01-22T17:49:00.000-05:00

Someone is on a deadline and has decided to procrastinate by mocking my boy-toys...

Personalize funny videos and birthday eCards at JibJab!

Pip and the power of PUPPIES!!!!!!!!!!

2011-01-22T11:49:00.002-05:00

CL's partner-in-crime is feeling immense loss over the recent death of my evil twin. CL noted a strange feeling of emptiness in our household since Pip the Squeak (aka Tasmanian Devil) is visiting potential Forever Homes, and her partner sent a cure for our loneliness:
PUPPIES!

Not only PUPPIES--- but WILD DOG PUPPIES! (anyone who knows CL will know the cosmic relationship between our household and Wild Dogs)

Here's the link:
http://www.zooborns.com/zooborns/2011/01/endangered-african-wild-dog-pups-born-at-brookfield-zoo.html

Enjoy!

Pip's cheap date

2011-01-20T00:49:00.001-05:00

(Note: Audio may be hit-or-miss since CL has disputed YouTube's right to suppress music used in this video. Seriously, the-powers-that-be want to argue copyright infringement with a NY Times bestselling author who has her (albeit beautifully written) crap stolen, in the past? Just...cheezes, people...find a life! No money is lost to the artist in this video.)

Wordless Wednesday

2011-01-19T16:56:00.000-05:00

(4 am, after Sugar opens Pip's jail cell...)

Zen

Reign of Terror

2011-01-05T10:14:00.000-05:00

The Colbert Report

Mon - Thurs 11:30pm / 10:30c

The Enemy Within - Caboodle Ranch

www.colbertnation.com

Colbert Report Full Episodes

Political Humor & Satire Blog</a>

March to Keep Fear Alive

Waiting for Godot

2011-01-03T16:01:00.001-05:00

(Vladimir and Estragon, perhaps?)

Mouth guard

2011-01-02T13:07:00.000-05:00

(CL received some requests for close-ups of Pip and I "mouthing" each other during play...enjoy! Interestingly, it is not this behavior that causes a CL intervention. The most prevalent behavior that forces CL to exert control and separate us? When I use my paw to slam Pip to the ground-- force him onto his back-- and demand he stays on his back by putting my mouth over his belly, while he squeals and squirms...CL is never amused by this behavior, even though I insist that Pip needs to be told "enough!" when he gets too excited during playtime...)

Wrestlemania

2011-01-01T21:20:00.000-05:00

Before the show (gratuitous prison shot)

Waiting for Prisoner's release...

Slamdown!
("If you say one word about my fat arse, Wild Dingo...")

Water break

Patiently waiting...
("And you wonder why CL makes you wear a diaper?")

Ready squirt?
("Squirt? Die, alpha bitch!")

Takedown!

Preemptive stop by CL
("What? You afraid of a little pain? You know that squeak was Pip-induced-drama, right? Coward...!")

Shameless man-whore shot
("You call yourself a dawg, stud? Suck-up...")

Strength, balance and flexibility

2010-12-26T14:23:00.000-05:00

Every morning, CL does 90 minutes of strength, balance and complex range of motion exercises, plus killer crunches for her abs. (Btw, ever try to do 100 crunches with no upper body strength and a titanium cage in your neck? Intense...anyhow, I digress...) Here are the first 30 minutes of stretching and Yoga, before she moves to the mat to begin her strength exercises:

Here's the continuation of the battle, while CL trains and tries to ignore the screams, squeaks and grunts from us (not her):

CL is continually amazed at my gentle behavior, while I play with Pip. All that spastic energy would drive CL bonkers! I guess we now know the secret to Pip's calm demeanor, huh?

Snuggle time with Pip

2010-12-25T16:28:00.000-05:00

(for a Chihuahua, he's pretty darn mellow...)

"You don't think about it, you just give"

2010-12-25T00:53:00.001-05:00

A Festivus miracle...

Pip sleeping while standing

2010-12-24T08:57:00.005-05:00

(It kinda freaks me out that Pip is the same size as CL's boob)

Pip the Squeak

2010-12-23T14:43:00.001-05:00

(aka the Tasmanian Devil)

Crazy Lady and I are working with Judy (from Walkin' the Bark Rescue) to foster Pip, a devilish long-haired Chihuahua. As soon as he understood that I was SheRa, Princess of Power, and CL was She-Who-Must-Be-Obeyed? No issues. He's teeny tiny (less than 5 lbs), so taking care of him is not a huge challenge for CL. He has learned his name and is super-duper smart. It took 40 minutes to teach him "sit," "down" and "come." He had a bit of "I am the MAN" attitude, but that lasted for less than a day. He has settled into our home and routine, and life is good. Of course, he loves to snuggle with CL, while she writes in the morning.

You can read more about Pip here. Oh! And Judy very kindly took a short video of our first meeting last night. Here it is...(thanks, Judy!)

Enjoy!

More Occupational Therapy

2010-12-13T13:52:00.002-05:00

Where is the love?

2010-12-02T11:05:00.000-05:00

(-- with me, silly goose!)

Words to live by

2010-11-07T23:02:00.000-05:00

"The tortured artist myth is rampant. People paint me as some kind of black witchcraft-practising devilhell, that I have to be twisted and dark to do what I am doing. It's a load of rubbish."

-- PJ Harvey

Uh, yeah. CL and more deadlines. We've moved beyond Pink Floyd for mood music. She has completely shot any remaining hand function and is 100% dependent on voice recognition software, these days. Now, if only her voice would stop croaking after 2 hours of continual use. (Although her agent calls it "smexy times" when he listens to the chapters. Yes, a bit creepy, huh?) Anyhow, her September podcast was so successful that she has been asked to do another one on "Hope, Light and Overcoming Darkness" for the Holiday Season. Why PJ Harvey to "carry the mood" for the current project? Only CL's twisted mind holds the answer...

Zen

Frackin awesome

2010-11-05T14:03:00.000-04:00

(See complete first episode here. CL is not a fan of the comic series-- in her opinion, not enough character development--- but the AMC series shows promise of heartbreak, humour and gore.)

Samhain

2010-10-31T15:10:00.000-04:00

(yes, a creepy book cover for an upcoming release-- and it does not resemble my beautiful face, no matter what CL says...)

untitled

2010-10-29T01:28:00.000-04:00

Ugh. CL's on deadline. Between Floyd, Green Jello, and mad cackles about pigs and wolves, she is driving me INSANE. At least it's her first real contract since surgery, so I can't really complain. Chick-a-dee needs to find a way to pay those never-ending medical bills.

Seriously, though-- PIGS with WOLVES? The girl has lost it...

p.s. cool pic of her sister Lisa on Mt. Rainier, huh? Her partner Kevin died over a year ago, and they made the climb to commemorate his amazing spirit. CL loves this picture because it reminds her of the gift Kevin gave Lisa-- her smile.

The Kindness of Strangers

2010-10-09T15:55:00.000-04:00

As you know, humankind has left the taste of rancid squirrels in CL's mouth-- and believe me, I know the taste of squirrels-gone-bad. You bury them for too long? Well, let's just say your body can't digest the corpse without screaming, "get me outta here!" at 2 AM.

But, I digress...so, humankind's response to CL's disability? Not warm-and-fuzzy. You can imagine her response when she found a growth on my face. Yep, it went something like this...

gawddamnmotherfunckingicannotbelievethisyoupoorbabythissucksthissuckthissucks

(blurry picture of growth above)

After the 20 second meltdown? CL picked up the phone and called the vet. She knew she could call any of her friends, and they would jump in and immediately help. CL wanted to try the "independent route," first. She knows that her friends are amazing-- but, finding a solution without always depending on friends gives them a break and reinforces CL's independence. So, here's what happened when she called:

CL: You know I'm disabled, in a wheelchair, living alone and with no reliable transportation. Sugar is due for her annual check-up and shots, and I just noticed that she has a mole on her face that is rapidly growing and causing her discomfort. Can you recommend a way to get her to your office? Maybe you could do a home visit?
VET: Let me check.
(pause)
VET: We don't do home visits, we know someone who does-- but I know Sugar is a shy dog, and would prefer to be seen in our office by familiar people, so hold on and let me ask around...
(long pause)
VET: Our office manager lives near you. He can take Sugar for the appointment, and bring her back. What day and time works best for you?

Seriously. The vet office did not say "tough luck, find another vet." They found a solution, and a complete stranger offered to help. CL had stranger-danger worries, but I could have told her, "not a problem, chick-a-dee, the shyness is under control and the vet is a reliable, trusted entity."

Guess what? I was right. As soon as the office manager arrived, CL introduced me, pointed to his car, and said the magic word: "Okay." I jumped and settled in for the ride. The vet kept CL informed during the day, and the ride home was uneventful. The best news? The growth was not malignant and I am in perfect health.

See? No worries. They even refused to let CL pay for gas. I could have told her that humans were not all bad-- there are kind and trusting souls in this world, if you let down your guard and give them a chance.

After all, CL is the human who taught me this lesson in life.

Target

2010-10-07T15:14:00.000-04:00

(Looking for warm-and-fuzzy? Go here. This long, angst-driven post is not for you...)

CL has been thinking a lot about life changes, poor medical care, people-in-need of social services, (mis)perceptions, beauty, sex and, well, LIFE in general. Many good things have happened, including new adventures and new strengths. After speaking with her fabulous shrink about the Safeway and Whole Foods incidents, however, CL has been "stewing" and "confused."

Here was the conversation with her shrink:

Shrink: So, how do people see you?
CL: See me?
Shrink: Yeah. If you could describe yourself, and other's perceptions, what would you say?
CL: I don't know. I mean, I know the correct answer from my head, I can analyze their perceptions and my reactions all I want-- but I honestly can not define how I feel. My heart is confused.
Shrink: What do you mean?
CL: Well, sometimes I feel invisible. No one sees me. They cut in line and ignore me, when I say "hey, I was here, first." They try to run me over with their cars...they steal lights from the front of my house, so I can't use my wheelchair at night...they push me underwater, away from the rope, when I try to swim...you know...invisible...

Shrink: They?
CL: People.
Shrink: What kind of people?
CL: Arrogant, self-entitled, I-would-call-them-pricks but I actually like the word "prick," so...you know...PEOPLE.
Shrink: Not all people.
CL: Yeah, not all people. Just 90% of the world who live in their bubbles, ignore people in need, treat me like I DID SOMETHING WRONG.
Shrink: Anger.
CL: You think?
Shrink: And sarcasm.
CL: Really?
(pause)
Shrink: So, the "F" word?
CL: Frustration?
Shrink: Yeah. Frustration. So, tell me, how would you describe yourself, in these situations?
CL: Besides angry and sarcastic? Fuckin frustrated?
Shrink: Uh-huh.
CL: Confused. I mean, what do you say to people, when they make assumptions about your life? When they chose to see you, and not ignore your existence? When they scream out of their car windows, "hey fat girl, get off your ass and WALK outta that chair!"
Shrink: What?

CL: Oh yeah. When people see me? They are pissed off. They think I put myself in this chair, I caused the tumors, I'm spending their tax dollars on services not really needed by a cripple. I mean, one of my neighbors actually called the paratransit authorities to COMPLAIN about the bus, and how it was a waste of tax dollars to pick me up and take me to my appointments. These are people with kids. They should set a compassionate example for their children. Can you believe these people in suburbia, living their self-entitled, egocentric lives? I mean, WHO DOES THAT?
Shrink: Huh. Maybe you should move to Berkeley?
CL: Right. A whole other kind of self-entitlement ass comes with Berkeley.
(pause)
Shrink: True enough...so, do you feel like you have a target on your back?
CL: A what?
Shrink: A target.
(long pause)
CL: I don't like that word. TARGET. I don't like feeling as though someone has chosen me as a target for their rage. That's frightening.

Shrink: Maybe, for the first time in your life, you are a visible minority.
CL: I'm a Jew in Walnut Creek, with a rare genetic disease. Being a minority is nothing new.
Shrink: The wheelchair is new.
CL: True.
Shrink: People are making assumptions and treating you differently, because of how you move your hands and arms, use the chair, ask for help, try to swim, take the bus. You're a visible minority, now.
CL: True.
Shrink: So...do you feel like you are a target?
(pause)
CL: I don't know.

Amen (says the spiritual atheist)

2010-09-29T11:57:00.000-04:00

Read this.

Dedicated to the woman at the Walnut Creek Whole Foods who approached CL and said, "Wow, you are SO LUCKY to be shopping in a wheelchair. You don't have to carry anything, and walking won't make you tired. Do you even realize how lucky you are?"

CL: "Uh huh. Unfortunately, my chair is not a luxury item, like your BMW."

Or, the Safeway check-out clerk who asked CL's personal care attendant (Miss J), "are you this special lady's caregiver? You are so brave to help her out. I wish we had more people like you, to help those who are, um, you know-- special." Then, the check-out person turned to CL and said- very slowly and loudly-- "what a good girl you are, to do your very own shopping!"

(later)
Miss J: What was that about?
CL: She thought I was slow.
Miss J: Slow?
CL: Mentally challenged, mentally handicapped.
Miss J: What is that?
(pause)
CL: Retarded.
Miss J: WHAT? Why did you not defend yourself?
CL: Um, first time anyone in my life has ever assumed I was mentally handicapped, in some way. I was speechless.
Miss J: You need to go back, defend yourself, let her know that you are not retarded."
CL: And say what? She thought she was being nice, kind, open-minded. Asserting myself after-the-fact would embarrass her, and make me look even more mentally challenged. Next time, though? I'll find a delicate way to say, "hey, this chair does not make me mentally--"
Miss J: --retarded?
(pause)
CL: Um, yeah. Retarded.

Thanks, S.K., for your insights this week.

ZEN

RIP Eddie

2010-09-24T16:20:00.002-04:00

Now THIS is a wedding!

2010-09-09T20:50:00.003-04:00

Congratulations Vanessa and Lin!

Cabbies, Service Dogs and Unneccesary Angst

2010-09-07T00:15:00.001-04:00

For us? Happens all the time in Boston and New York. At Logan Airport, the security folks even had us wait OUTSIDE the line for a "special cab," and it took over 2 hours to find a cab to take us home to Cambridge. They could care less if I was a service dog. They did, however, charge us $20 more, because I sat with CL during the 10 minute drive home.

CL is not looking forward to returning to Boston in a wheelchair. If they refuse service to a working dog, wonder how the cabbies at Logan Airport will treat a working dog and a woman living life on wheels?

A Day with the Studmuffin

2010-08-30T14:35:00.000-04:00

While Popeye and Phoebe hung out at the park yesterday, I spent quality time with this manly-man:

How cool is Boomer?

We spent very little time resting-- and a lot of time playing!

Of course, I demanded CL snuggle time, once Boomer-the-Studly-Stud vacated my property:

No contest. Batman wins.

2010-08-13T14:55:00.001-04:00

Unless you are living in a demon-dwelling cave surrounded by Satan's gargoyles, you know about the Wonder Woman costume changes, right? Here she is, in her full frontal glory:

Now, you would expect a former writer for the comic to be appalled at Wonder Woman's new look. They basically gave her a boob job with thighs that don't touch. Actually, CL is okay with it-- well, to be honest, she doesn't really care, as long as the check is in the mail... Then, she saw this specimen of male glory:

And, thanks to the stunning and talented Meljean Brook, CL saw this expose of Superman's goodies:

Ha! Go here for some of Meljean's enlightened perspective on Superman's junk (or lack thereof). Seriously? No contest. Batman always wins.

Zen Bat Ears for today:

Almost Wordless

2010-08-05T09:33:00.000-04:00

Predator

2010-08-04T12:18:00.000-04:00

(right before CL prevented me from removing an Evil One and snacks' existence last night)

"The Satan loving, electricity burning tree killer"

2010-07-25T19:30:00.002-04:00

As some of you know, CL sold her writer's soul at the delicate age of 15, so she can publish porn and graphic novels. At the virginal age of 22 (stop laughing!), she merged the genres to create killer cannibalistic bunnies and porn-lovin gargoyles for a small-- but mighty-- comic book publisher. She was doing some random "folklore research" about her porn-lovin gargoyles this morning, when CL found this tidbit on the internet. (http://thewvsr.com/gargoyle.htm)

Me? I just wish she would finish her "research" so we can practice our wheelchair walking. I'm on (yet another) diet, and I need my exercise. She has kept me in this sit/stay for over 20 minutes!

Forgiven?

2010-07-23T21:26:00.000-04:00

Do you forgive me?

Please?

Pretty please, with ears on top?

PSYCH!

You messed with the wrong Formosan Mountain Dog when you left me for 3 days!
Wait~ what's that?
What are you doing?
Don't you dare put my bodacious booty on the internet, don't you dare~

Damn wench.

Home Sweet Home?

2010-07-22T21:36:00.000-04:00

Remember this?

Well, I sang a different tune, this time around...

Why unlimited wi-fi during hopitalization...

2010-07-21T10:51:00.000-04:00

...is a very bad idea for a horror author with anger issues:

(thanks Onion)
Home sweet home. Soon. No hospital drama, no problems-- and the official "green light" for CL to resume outpatient PT. I don't think a single human being has been more excited to walk on a treadmill...

Yummmmm...?

2010-07-20T22:02:00.000-04:00

Remember this?

Crazy lady has progressed to this:

Something tells me that my raw diet is a huge improvement over CL's menu, these days...;-)

What in the world...?

2010-07-19T22:33:00.000-04:00

Crazy lady is back in the hospital. They are taking pictures of her brain, and torturing her with awesome seizure tests. Check out her head:

Plus, she has a view!

(and yes, that's a video EEG in the corner, monitoring her every move) The folks at the Kaiser Redwood City hospital have been wonderful. After her disastrous rehab experience, CL was worried about another hospital visit. I could have told her-- no worries, this time-- the level of care in the neurology unit is outstanding.

Oh, and me? I'm at the Grandparents, until Judy picks me up and I have the opportunity to torment Popeye:

(and no, I am NOT spoiled!)

Wordless Wednesday

2010-07-14T18:05:00.000-04:00

(learn more about Buddy here. He's just visiting us, today...)

Safe words

2010-06-27T13:44:00.001-04:00

I know. I haven't posted in a while. I blame my crazy lady. She has been trying to get her body settled into a plateau, and it is not cooperating. She wanted to resume physical therapy rehab, but no one will touch her-- it's that "physically unstable" and "activity causes your seizures and AD" crapola, yet again. Oi. If she wants to take the risk and just do it, why won't her health practitioners support her efforts? Geez. CL can't find a co-dependent to enable her desire to walk. They are, to quote CL, "running scared."

I know. They have every right to avoid the risk. It's dangerous, and no one wants to be responsible for (yet another) trip to the ER because she can't empty her bladder for over 14 hours. CL is frustrated, but we all need to learn: Safety comes first.

Still, patience is not a virtue that she inherited, or learned. The good thing? I am learning new tricks! One of the most amazing things about my watchfulness is my ability to recognize CL's seizures. They are complex partial seizures, and even the health care professionals have a hard time recognizing them. She doesn't have involuntary spasms, when she has her seizures. Instead, CL loses time. She freezes, stares, and will sometimes repeat the same phrase over and over again ("Is there a monkey in the room? Is there a monkey in the room?") I can sense them about 2 minutes before they start, and I whine and push against her body, even when she is laying in bed. It gives her enough time to set a 10 minute timer. If the timer goes off, I push a large button on the remote control. The remote triggers a system freely set-up by the State of California. It calls the Operator. If CL is unresponsive with the Operator, then the Operator dials 911. Here's the remote activitated phone:

Here I am, practicing my mad seizure alert skills:

Pretty cool, huh? It took about 1 hour of training to learn how to use the remote, and we practice, practice, practice (after CL disconnects the system, of course). We also use a "safe word," in case of emergency. CL says this word, and I immediately press the nearest remote with my nose. Yes, I am an awesome, powerful, smart bitch-- and, CL knows it!

Next step? Learning to ride Para-transit, so I can go with her to appointments. The seizure alert training demands that I always watch CL, when working. The buses won't let me on the wheelchair ramps; and I have to remain out of eye contact with CL in a sit/stay on the bus for about 5 minutes. So, we are trying different methods with the Para-transit authorities, to find a way for me travel with CL. If anyone in the SF Bay Area is available to help with the training, please drop us an email at indeoluv@gmail.com. We can't pay cash-- but, we can provide dark chocolate chip brownies!
ZEN

And, another moment of Zen under our apple tree:

Treme

2010-06-18T04:29:00.010-04:00

The New Orleans Musicians Relief Fund, a 501(c)3 grass roots charity founded by displaced New Orleans musicians after Katrina, provides grants, instruments and most recently, a free concert series. Learn more about NOMRF here.

ZEN:

Uhm...speechless...

2010-06-17T00:54:00.000-04:00

ZEN (much needed after that commercial)

Sleepy Wordless Wednesday

2010-06-09T00:24:00.002-04:00

Fly Girl!

2010-06-06T13:05:00.000-04:00

Fun video, huh?
Check out the cool post here, from Walkin' the Bark Rescue. Here's a picture of CL's new wheelchair- the one that Judy describes in her post:

Pretty. The pink rims sparkle in the sunlight. The motorized chair will be used for distances, ramps, travel, and anything else that requires upper body strength. The motorized chair has already improved our living environment by making things safer for all of us. CL has fallen 11 times since she has been home from the hospital-- all because her legs or arms stopped working without warning, while she walked with the walker, pushed the old manual chair, or transferred to another spot (i.e., bed, shower bench). There have been ZERO falls, once she has started to use the motorized chair. One reason (besides the obvious stability factor) is that CL's pain level has been reduced by HALF since she stopped using the old manual wheelchair from the hospital. Remember all of the upper arm, shoulder and back pain she was having, after surgery and during treatment? And, how the doctor kept saying that she was "too sensitive" to pain, and the nurses mocked her need for pain medication? Well, CL no longer has pressure sores on her upper back, and her pain level has significantly dropped. It turns out that the old manual wheelchair was creating a lot of problems. Now that she has stopped trying to propel herself forward with nerve-weakened limbs, the rest of CL's body has had the opportunity to heal. (Go figure-- manually propelling a wheelchair over distances, ramps and hills are a problem for someone with permanent central cord syndrome, left undiagnosed for over 7 years-- something the folks in the Vallejo rehab center never thought about, I guess...)

Oh, and in case you think CL's life is all about terrorizing walkies with a motorized vehicle, she has not given-up on using a manual chair. CL's new manual chair arrives in 4 weeks, and it glows in the dark! Totally awesome, right? She is paying 100% out of pocket for the $3000 manual chair, but she wants to use it as back-up, in case there are problems with the motorized chair. Plus, she gets to order a chair that will be less stressful on her body than the bizarro manual chair that was prescribed to her, when she left the hospital.   Her new manual chair will have long arms, to prevent unstable transfers; a hard mesh back, to prevent the pressure sores she was getting from her old manual chair; and specialized "quad pegs," making it easier to push herself, since she has zero grip after 5 minutes. CL plans to use this new chair for short, flat distances; and for traveling no more than 75 feet, which appears to be her limit before spasticity and pain sets in. (Again, why did Vallejo Rehab not consider this an issue, before discharge? Did they expect her to sit on her arse and not move, all day long? Oy vey...)

Thank dawg Kaiser home health care, CL's new physical medicine doctor (he totally rocks!), and her wonderful PCP worked together and intervened to fix the safety and pain issues left unresolved during hospitalization. Our life has settled into a routine, and CL is starting to explore the outside world. She has arranged for art space at Creative Growth, and wheelchair Yoga at the Niroga Center for Healing.    She also returns to the rehab center for outpatient physical and occupational therapy. She can not wait to use this really cool machine that will allow her to safely walk on a treadmill:

With this machine, she can test how long she can move, before one (or both) of her legs "disappear" from her body. Finally, CL can safely experiment and try to build endurance, without the fear of falling or injury.   Woo hoo! Next step? Seizure control!

p.s. Why the colors and glow-in-the-dark? Well, CL believes: "You need to create 'pretty' wherever you can in this world-- especially shiny, sparkly, colorful pretty-- anything to lift your spirits and make your day a shiny, sparkly and colorful one!"

(Tie Dye in the Wilderness by Lisa Sanditz)

Yeah...I have no idea how a hardcore horror author still maintains her psychedelic outlook on life...I keep thinking of the Creative Growth director's comment about CL, during the interview:

"It's always the smiling, engaging and laughing artists who come-up with the darkest material..."

RIP Rue McClanahan

2010-06-03T22:39:00.000-04:00

In Memory

2010-05-31T10:48:00.000-04:00

(Lafayette Hillside Memorial)

Occupational Therapy

2010-05-23T12:43:00.001-04:00

(Per Wikipedia, "Occupational therapy promotes health by enabling people to perform meaningful and purposeful occupations." IMHO, the best way to fine-tune motor skills in the hands? Perform meaningful activities? Give some purpose to your life? Massage me, baby! Work those hands! Mmmmmmm...lovely...)

Happy Birthday Nick!

2010-05-22T13:43:00.004-04:00

(and yes, I've added "return to Japan" to my "to do" list...)

Eeyore's Lost Tail and Doggy Zen

2010-05-21T12:25:00.001-04:00

Oh dear, crazy lady has had a difficult 2 weeks. She is not feeling especially perky, positive or plentiful. She's a bit pernicious this morning, and she needs a break from the "real world." Her amazing sister Cece (aka "crazy bitch") bought her some time from the posting world this week, but I think CL needs another 48 hours of rest. Her silly seizures are "whoopin her arse" and she's pretty unstable-- no matter how careful she is, she keeps falling! The powers-that-be gave her a useless manual wheelchair with short arms and impossible control (ever try to push a wheelchair with no upper body strength and grip? not pretty...). The wonderful folks at Kaiser home health and her new (amazing) rehab doctor are pretty appalled, and they have rallied to find her a better wheelchair so she can regain some independence. But, these things take time, and she is stuck at home. Meanwhile, it looks like CL may need some more time in the hospital, to get her seizures under control. They've quadrupled in size and intensity since the surgery, and the medication is only partially working. So, I've decided to give CL a break and let her stay in a self pitying, cynical, angry funk for the weekend. Believe me, though-- as of this Sunday, I am forcing her arse into a happy frame-of-mind, so she can finish posting her Vallejo Rehab diaries. The physical and occupational therapy folks worked miracles; and we all need a bit of sunshine after hearing about the poor medical care she received in the hospital.

So, to acknowledge her funk, I give you a moment of Eeyore:

And, to give us all a moment of inner peace and sanctuary, here's Doggy Zen:

Monkey See, Monkey Do

2010-05-15T09:28:00.005-04:00

Hi - It's Crazy Lady's sister Cece again. Recovery has been a road full of lots of twists and turns and CL asked me to pop in a give you all an outside view once again.

Things have been less than ideal for my big sis right now. Hospitals and rehab and at-home support services are not new to me, but it is different when it is your sister. The same sister who used to terrorize the mean neighborhood boys into complete submission.

That said, I'm going to bring you back to the time last month when I participated in my second therapy session with Crazy Lady. It was about two weeks post-op. My sis was in a bit of a daze when my parents and I arrived. She had just had a seizure, the nurse informed us. She had fallen out of bed that night, or had a seizure and had fallen, they weren't sure. Also, her blood pressure was jumping around and she had to be monitored constantly. Crazy Lady was still positive about attending her physical therapy session.

The physical therapy rehab room was like something out of the movies. It was new and big and shiny. Mirrors, exercise equipment, parallel bars for walking, rows of therapy tables. The physical therapist that worked with Crazy Lady was young and positive and, thankfully, very aware of my sister's multiple conditions that needed to be monitored.

So when Crazy Lady started hallucinating, the therapist was immediately concerned. "I see a monkey over there!" CL mentioned, looking perplexed. "Do you have monkeys here?"

I immediately started giggling. Couldn't help myself. Please note in my description above, nowhere do I mention monkeys in the room. Therapy Lady scanned the room herself, "No we don't have monkeys here," she replied slowly. We were near the end of the session and Crazy Lady was perched between two parallel bars, taking slow and difficult steps. My sister had explained earlier that it is hard to figure out how to walk when you can't feel the bottom of your feet.

Therapy Lady stood in front of her and I stood behind, ready to catch. Ha, bad idea if you ask me. I have ADD and as soon as I heard the words "monkey in the room" I wandered off to find the critter myself. She didn't fall, so you can relax. When I got back (no monkey found), Therapy Lady was giving Crazy Lady the third degree, "So, is the monkey furry?"

"Yeah, is it telling you to do strange things? Does it talk to you? Does it want you to hurt anyone?" I had to chime in. Therapy Lady was not amused by my helpfulness. Crazy Lady was, though. We laughed all the way back to her room.

In the room things got less funny fast. The changeover with the nursing staff resulted in a drop-off of communication, and blood-pressure checks were discontinued. By the time... almost two hours later... the checks continued, her blood pressure (no surprise) had shot up. I was tempted to hook myself up on the monitor, pretty sure mine was reaching new highs after dealing with a hostile anti-social doctor and nurses who didn't believe anything they didn't read in a chart (her earlier blood pressure recordings had disappeared).

Not the best day ever. We later found out that an earlier doctor had reduced Crazy Lady's pain meds by 75% without telling her, triggering a number of problems. Boy, was she pissed. Even the nurses were appalled.

Crazy Lady thought my post might offer some comic relief, but I'm afraid this was less funny than I thought it was going to be. I did consider buying her a giant stuffed monkey for my next visit, but our mom was not amused by the idea. Maybe next time. Sugar will probably tear it to pieces. All the more reason to get one, perhaps.

Happy Mother's Day...?

2010-05-09T01:10:00.002-04:00

(a moment of parental Zen? or, an evil plot, masterminded by moi? you decide...)

A random Friday moment

2010-05-07T12:10:00.002-04:00

To Walk Again

2010-05-06T10:29:00.001-04:00

Editor's Note: Before my surgery, I waddled like a duck. I shifted my weight from foot-to-foot and consciously used my abdominal muscles for balance (most folks are unconscious of this process). I couldn't travel more than half a block before the "creeping numbness" would hit my thighs, causing my right leg to collapse. In addition, a year before surgery, I had slowly stopped my regular exercise routine. For years, I walked 5-7 miles a day, swam 90 minute laps in an Olympic size pool, greeted the morning with tai chi, and ended the day with a yoga salutation to the moon. I use to say to folks, "I'm a fat girl, but a fit-fat girl." I had strange pride in the strength of my arms, the balance of my body, the purpose of my gait. When my arms started to shake after a swim and I could no longer leave the pool, I was heartbroken. When the numbness and coordination left my feet, and the pain of dystonias crippled my toes, Sugar was heartbroken ("What? No more long walks?") The worse thing, though? Being told by the docs eight months ago, "No more Yoga."

As I've said many times, occupational and physical therapy saved my life. (I also sent a huge "thank you" letter to my Yoga trainer-- as you'll see, 23 years of Yoga saved my ass. Literally.) You've already read the story about my left hand. I was willing to put up with horrific medical care if it meant that I could use my hands, relearn to walk, and regain my balance. Relearning to walk means retraining the brain. For me, it had very little to do with my legs. It is a long, intense, fascinating process. I've split the journal entries about walking into 3 parts.

Part One

We are dancing. A tall, strong, beautiful Austrian with a gentle mouth and analytical eyes is holding my arms, encouraging my sway. Back-and-forth. One foot. Another foot. Movement forwards, movement backwards. I feel my butt contract, and my abdominal muscles are pulling and pushing my body. It's a conscious move, and reminds me of strength built through years of Yoga and Tai Chi. I am centered and focused on the "moment." To know my body can still move, that there is still strength in some muscles? Wonderful. I have no idea if my legs are moving, and I don't care. I can not feel my feet, and my brain is convinced they are turned outwards, inwards or missing altogether. I suddenly worry and lose my focus. Are my feet even there? I turn slightly to my right and try to see them in the mirror. I stop. I don't want to know what they are doing. I'm not ready for that reality. But the numbness doesn't creep up my legs, and the soft swaying reminds me of a dance. A waltz. Who else but an Austrian could teach this former "twirling white girl at a Grateful Dead concert" to actually dance one of the most beautiful, graceful movements in the world? The music in my head aids my concentration, and I hear the first encouraging words since my surgery: "Good job, beautiful."

"Do you want to lift your legs, try to walk?"

The Austrian is smiling, encouraging my progress. My arms are weak, shaking. I can not feel the floor and my hands lose their grip on the parallel bars. The pain in my shoulders is excruciating. The muscle spasms in my back continue to crawl along my spine, and they (those damn spasms are not a piece of me, they are a separate entity with their own agenda) try to interrupt my progress. I imagine (briefly) chopping my arms off. Anything to relieve the pain. In the end, I don't care. I tuck in my butt-- suck in my gut-- take a deep belly breath-- and lift my right leg. I feel strong, Part of a dance. Confident. A second physical therapist is holding my other side, helping me balance on the bars. A third therapist is following us in a wheelchair. All I see is an end point, a chair at the end of the bars. Waiting. Eight simple steps. I start to sweat, shake and slow down-- but, I stay focused on the chair. I feel the slight movement of my abdominal muscles. The contraction of my butt. I consciously relax, hit my meditation pose, and remain focused on my goal. The chair is 3 steps away, and I have not stopped my dance. I smile.

"Do you want to try and turn around, before sitting?"

I am ecstatic. Who knew that you could learn to walk without feeling your legs? My brain has just learned that my abdominal and butt muscles can trigger a step, keep my balance, unlock my knees. Granted. I would have preferred to feel the floor on my feet, the push of my legs. Before we had started the dance, I had stomped my feet to test the sensation, and I felt no reverberation. Nothing. I suspect the stomping was more of a trigger for the brain, a remembrance of my former (non-waddled) gait.

I start to turn, and I feel the support of the team as they help me keep my balance.

I wake-up in bed. My face is wet, I'm confused, I'm tired. Damn. Another seizure. I grin, though. I laugh. For the first time in almost a year, I did not waddle like a duck. I walked.

ZEN

Comfort

2010-05-03T10:28:00.001-04:00

Editor's note: for the next 4-5 days, things are a bit foggy. I was having at least 2-3 seizures a day, and I was struggling to do as many tasks as possible, on my own. Some of my struggles were due to my own stubbornness-- other struggles were due to the fact that the nursing staff made it clear that they had "more important, sicker" patients to deal with, and I was an "inconvenience" (yep, direct quote...). Thank goodness I had my computer. My journal is a rambling mess-- but, I was testing the voice recognition software, so I recorded everything that was going on, at the time. By the third day of rehab, the head honcho nurse gave me permission to incorporate Sugar into my recovery. I never felt comfortable having Sugar stay with me at the hospital because I never felt safe. However, her visits lifted my spirits. I found this journal entry, and I realized that her visits helped in other ways, too...

My First Sunday

My roommate won't stop wailing. Not the soft cries I make, while hiding in the bathroom. Large, loud, horrendous cries of grief. She is another miracle, trapped in a body that refuses to cooperate. She can't eat, so she depends on a feeding tube. She spent months in ICU, unable to walk, to communicate. Now, she can walk, she is finding ways to communicate, and she knows how to express her emotions. She has the most beautiful smile I have ever seen-- and the most heartbreaking cry I have ever heard. Her husband sleeps next to her bed, in a small chair the nurses have provided. He cares for her every need. He bathes her, takes her to the bathroom, gives her medication, and has even learned to feed her using the stomach tube. He has left her for a much-needed respite, and a moment of prayer. She is devastated without him, and she won't stop crying.

No one comes to visit, to check on her. I call the nurses, but they refuse to help. "Nothing we can do, we have other patients that need us, it's almost shift change." I try to talk to my roommate over the curtains, across the room, to let her know that she is not alone. The distance doesn't help. I call and ask a nurse to help me into the wheelchair. She refuses, again, there are more important patients that need her help before her shift ends. I crawl from my bed and climb into the chair. By myself. Falling, not caring, because someone needs to do something. I'm not saint. I'm tired, sad, in pain-- but, I find a way to plant a smile on my face and drag myself to my roommates bed.

I touch her hand. She continues to cry.

"Hi. What can I do to help? Do you need something?"

Her mouth is so swollen that she can not speak, but she communicates with her hands and grunts small words. It's a mix of English and Tagalog, but I understand what she says.

"Ah, your hubby is at church. He'll be back soon. Did you see my dog, Sugar, today?"

She smiles.

"Sugar is beautiful, right? She's a service dog. She takes care of me. I miss her. Not the same as your hubby, but she's a part of me, you know?"

She stops crying and touches her left chest.

"Yes, a part of my heart. So, do you like dogs?"

She nods her head and touches her chest, again, smiling.

"Ah, I see, you love dogs! Well, let me tell you Sugar's story..."

I stay by her side and hold her hand. I tell her Sugar's story of abandonment, rescue and service to humankind. Her husband enters the room and we don't even see him, we are both so enthralled with Sugar's life. In the end, she laughs. She looks up and sees her husband. She claps her hands in joy.

I wheel back to my bed and call the nurse. For once, someone comes and helps me to my bed.They have had a shift change and it's the gentle nurse, the one who (I've learned) will always be ready to help, no matter the emergency or need. She has only been assigned to me once, but I remember her care, attention, and kindness. As she tucks me in, the nurse whispers, "We're not suppose to encourage patients to talk too much with each other, get involved in each others lives. It's important to respect each others privacy. But, what you did? That was a beautiful thing to do. She looks happy."

I did nothing special. I cared for her like I wish someone would care for me. I treated her like Sugar cares for me, every day I am with her.

All I did was give comfort to someone who was feeling alone.

ZEN

Take a deep breath

2010-05-02T10:56:00.000-04:00

-- and an extra moment of Zen, after the most recent posts from CL.

The first 3 days

2010-05-02T06:29:00.001-04:00

The beginning

My first thought after 7+ hours of surgery? "I'm alive. Take that, hah!"

My second thought? "Fuck, I can't move my body, son-of-a-bitch, what the hell, someone help me NOW."

Yeah, the inability to move my legs and arms had managed to put me in a total freak-out. The doctor came over, ran some tests, and mumbled something about "swelling." She left, and another doctor came to my bedside. She looked about 12 years old, and her head barely reached the top of the recovery bed. "Remember me?" she asked. "I was the neurologist who watched your nerves during surgery."

My intelligent, productive, helpful response?

"Really? Last I checked, I was ASLEEP during surgery. I don't remember a damn thing."

(Have I mentioned the "sarcastic bitch when scared and in pain" personality trait? I blame genetics, of course. Just look at my sisters.)

This sweet, young, adorable pixie actually GIGGLED, when I spoke to her. I was not being funny. I would have lifted my arms and moved my fingers around her throat, if I had any motor function left in my body. She is one lucky pixie.

"Everything is fine" (giggle) "Your nerves checked out fine during surgery" (giggle, giggle) "I'm sure this is just swelling or spinal cord shock" (giggle) "Feeling will return soon, within a couple of days" (giggle, wave, run for her frackin life)

24 hours later, the pixie was vindicated. Somewhat. I could move my arms and legs. Still weak, can't walk, can't feel a damn thing-- and no way can I eat solid food. Choke, choke, choke, But I can move. The nurse keeps staring at me and laughing. Do you think she finds my flailing leg pushing the food cart funny? Probably. I find it funny, too.

Wish I were a better person. Wish I was happy to be alive, to have some motor functions (damn left hand still won't move, and my toes suck because they won't listen to my brain). I'm scribbling on paper towels, only 5-6 words at a time, using my right hand, the only one that works, the one I never used to use. I need to start my story, even though this situation SUCKS. (Editor's note: "sucks" was underlined five times, with many exclamation marks-- I admit, a bit overly dramatic...)

This was found on the margins of a Vogue magazine, written later that night:
fuck, pain. pain, pain, pain. the numbness has left my shoulders, and my entire body is on fire. electrical jolts in my fingers, and muscle spasms are in my neck, arms, hands, butt, abdomen and chest. there are "creepy crawly" bugs running under my skin. (Editor's note: I knew there were no bugs crawling on my skin. I just called the feeling "creepy crawly bugs" because it felt like something was climbing across my shoulders, arms, legs and neck. It's a weird type of nerve pain.) i almost wish the dead and numb feet, legs and hands would spread to the rest of my body. i miss the pre-surgery days of numbness. this pain sucks. the seizures won't stop. make it all go away.

Day 2
OMG, OMG, OMG. The most gorgeous human being has walked into my room. Brown skin, glorious smile, butterscotch eyes. Yum. Yep, my hormones are fully functional, too bad I feel like a floppy porpoise and can't get laid. Orgasms are on the no-no list, and why bother with sex if...? (Editor's note: orgasms can cause autonomic dysreflexia) Damn, he's hot. Damn, he's a doctor. Oh, double-damn-- he's head of the fucking department, married with many kids. No harm in lusting after someone though, right? Oh wait. He thinks I'm a good candidate for rehab in Vallejo. Awesome news. Best program in the state, maybe the country. They'll teach me to use my legs, arms, live life. They'll find a way to control the autonomic dysreflexia. How cool is that? Damn though, the hormones have turned me into a giggling 14-year-old that will agree to anything, right now. I am even writing like a hormonally-crazed adolescent from the 80s. OMG? Cool? Fur shur? Where do those words come from? My mouth? YECH. I suspect I am channeling that silly pixie neurologist.

Day 3
son of a bitch. i made it to vallejo rehab, but i have no idea what's going on. the paramedics put me on my new bed and left. my family is here. the doctor won't talk to me. he talks, but it's to confirm info in my chart. he doesn't listen. i try to tell him that i have other diseases, serious things wrong that will impact my recovery. the nurses said my seizures are worse, daily. muscle spasms are horrific. i'm starting a small fever, which could become something bad. very bad, very fast. he refuses to hear me. i get so frustrated that i tell him to call and consult with my pcp in san francisco, with my autoimmune doc, with my neurologist. he refuses. "i treat spinal cord injuries, that's all i need to know" he strips me naked in front of my sister and parents, and i ask them to leave. they don't need to see me poked and prodded. they already had to hear too much about my life, my health, the things i did to hide my illness from them before surgery. this doctor won't listen. he doesn't know why i asked my family to leave. he is holding a safety pin and sticking it into my body parts, causing spots of blood on the sheets. poking my anus. i feel nothing. i am freaking out. why don't i feel something, anything???

my family doesn't need to hear me scream.

(later, scribbled on the inside of a bag, hard to decipher some words)
it is 3 am and i can't stop crying. the doc told me i should be able to deal with more pain, that i should not ask for meds until i was an 8 out of 10. that's barely able to move due to pain. i ask for meds when i am at a 5 or 6, because i know it will get worse. i tell him that my autoimmune disease causes muscle and chest pain, but he doesn't believe me, he doesn't understand, he goes ahead and lowers the amount of pain meds prescribed by my PCP and surgeon, and HE DOESN'T TELL ME. i have to hear it from the nite nurse. she makes me feel weak, mocks my pain, says i am too sensitive to pain. i have to beg for an extra pain pill. i am begging like a fuckin addict, but i can't move my shoulders and arms because the muscle spasms won't stop. i'm scared. the nurses walk away. no one will talk to me, tell me what's happening, what to expect in the hospital. not knowing, not having a schedule? my worst nightmare. is a little compassion, comfort too much to ask for? they agree that the doctor is challenging, and tell me to talk to him. they refuse to ask the doctor on call to change my pain meds back to my ORIGINAL DOSAGE. at least they should let me know if someone will help me get to class, dress me, feed me breakfast in the morning. they've already forgotten to feed me lunch and dinner today, and they made fun of me when i tried to open the apple sauce, to take my ever-changing meds. i can't use my fingers, no strength, barely hold this pen, even with breaks. tried using my teeth. ouch. okay, it was kinda funny, and i had to laugh at the silliness. they finally helped me when they saw i couldn't do it. still, i can't stop crying tonight. damn. this is not what i expected, wanted, dreamed about...so sad...so hurt...this sucks.

ZEN

Before the journey begins

2010-05-01T14:08:00.000-04:00

CL here, prepping for the upcoming upload, while recovering from (yet another) fall because my silly brain won't cooperate with my body...(sigh)...have I mentioned lately that seizures and wobbly legs truly suck?

Anyhow, I've been trying to give my Kaiser Vallejo rehab experience some perspective-- maybe, over time, things will look different. The problem? They look worse. I know I was a difficult patient-- I was sad, grieving, in constant debilitating pain, and trying to make the best out of a bad situation by keeping a "stoic" outlook. Plus, I threw the medical folks (nurses and doctors) for a loop. They were hopelessly unprepared for anything that fell out of the Spinal Cord Injury (SCI) "normal" realm-- especially rare autoimmune diseases and central nervous system disorders. They tended to ignore non-SCI issues, or slap a band-aid on anything that got severe enough to trigger more SCI problems. Having seizures 2-3 times a day? Never happened as frequently, before surgery? First, deny that they were "real" seizures (apparently, "grand mal seizures are the only ones that count"-- yep, a direct quote from one of the nurses). Most of the nurses refused to chart the incidents until roommates, physical therapists and other patients said "hey! that's a seizure!" when I "faded out" (I lose time and memory, so I have no idea when I have them unless someone notices something or Sugar sounds an alarm). On my second day in rehab, the physical therapist noticed a 10 minute complex partial seizure that the nurses could not ignore. What did they do? They told the doctor, who then doubled the seizure meds without consulting my neurologist and letting me know about the change in my dosage! Again! (as you'll learn, the doc loved to change medications and dosages without telling me, first...fun times...not...) Oh, and it gets better...

Hmmm, gotta fever? Not too bad. Not severe enough to call the doctor. What? You have an autoimmune disease that causes fevers, and it will leave a rash with a distended belly, kidney failure and fluid in the lungs? Sure, we believe you. Maybe. Never heard of it before, although it's noted in your chart. Oh, what's that? You have a stomach ache, and believe you're starting an autoimmune reaction? It's probably acid reflux, nothing to worry about, you just need to lose weight. Nope, we don't need to read the Mayo Clinic notes on your disease. Huh? What's your problem, now? Hmmm, that's a HUGE rash on your belly. Maybe this is something we can't ignore. What? You need medicine right now, or it will get worse? Um, okay. Let me talk to the doctor. (20 HOURS LATER) Oh, yeah, doctor says we can start you on the autoimmune medicine. He doesn't need to speak with the specialist, he thinks he can treat it. (10 DAYS LATER) "The doctor spoke with your specialist this morning. Yeah, it's bad. We guess the autoimmune response made the SCI recovery more challenging. You should have said something, when it started..." (yes, uh huh, because it was ALL MY FAULT THAT THEY IGNORED ME).

I was willing to cut the medical folks some slack for not knowing how to recognize partial seizures, dystonias, and rare autoimmune diseases. I even cut the doc and nurses some slack for ignoring my heads-up ("um, hey, this is called an AUTOIMMUNE REACTION and it will get worse unless you give me my medication RIGHT NOW. It will even put me in autonomic dysreflexia and KILL ME, if you continue to ignore what's happening to my body"). I'm not willing to cut them slack for poor patient care and lack-of-response for SCI related incidents, however. I have an incomplete spinal cord injury in my neck. C4 Asia C is the official diagnosis. I have autonomic dysreflexia, bowel and bladder incontinence, and I can not stand or walk without assistance. Leaving me in the shower, unattended, for over 90 minutes? Unacceptable. Turning off the nurses' call light for the main station and not coming to help me go to the bathroom? Unacceptable. Not opening my meal containers because you have a "pinched nerve" in your neck? Really? Unacceptable. Leaving me in my urine soaked wheelchair for TWO HOURS and refusing to help me? Unacceptable. Falling out of bed, unable to call the nurse because they disconnected the call button-- and then refusing to come, when I yell for help in the middle of the night? Unacceptable. My favorite? The nurse doesn't like the ALARM sounding, every time my blood pressure reached the danger zone? She resented having to follow the autonomic dysreflexia protocol for someone who was "congested and just probably getting a cold?" (yep, another direct quote) Her response? Just TURN OFF the machine without recording the incredibly high numbers ("they are probably wrong, anyhow")-- and then tell the doctor, "there's nothing wrong with the patient" when she calls for an update. Seriously. Insane, unacceptable behavior.

I know I left rehab too early-- but, I wanted to leave. No matter how wonderful the physical and occupational therapy was, the medical team was going to kill me. Why? From what I can figure out, they seemed to think I wasn't "as bad as everyone else," "didn't really need to be there," and I "made things harder for the sicker patients" by "spending too much time talking to them and not minding (my) own business." Oh, and my favorite complaint about me? I was "too cheerful and social." Yes, smiling, saying "hello" and asking "how are you?" to other patients was discouraged by the nurses. Daily. Even the daytime nursing supervisor responded to my comments about my care by MOVING ME TO A DIFFERENT ROOM, so I was farther from the nurses station and couldn't overhear their "complaints about the difficult patient in room 3019B (me)."

Insane and unacceptable.

I was the patient. I was there to be cared for and treated in a safe environment. The physical and occupational therapy teams were awesome. The medical team needed to learn SCI treatment protocol, and the value of caring for patients as though they were a member of their own family. The frightening thing? I suspect some of the nurses actually treated their own family members like they treated me-- like dirt, something to be swept away and ignored. Some of the nurses were fabulous, and you'll read about them in my journal. They have a difficult, challenging job. The doc is one of the best SCI specialists in the country; but he was unwilling to examine anything outside of the SCI world that would impact my recovery, like painful autoimmune diseases and debilitating seizures. I learned to like him as a human being, and I learned to respect his amazing SCI knowledge. Now, if only he could see beyond the injury and view me as a human being. That was his challenge during my treatment and recovery.

Ah yes, memories...so, before I start uploading the journal, here's the daily moment of Zen:

The journal begins tomorrow, and the journey is ever-evolving...ciao! (and kisses from Sugar)

POV

2010-05-01T10:49:00.000-04:00

View from bed:

View from chair:

(ears!)

Bliss and burn

2010-04-30T17:14:00.000-04:00

Bad week for CL-- seizures, falls, uncontrolled pain, horrific autonomic dysreflexia reaction. Not good. It means a slight delay in posting her journal-- but, it gives me a chance to show you my mad working girl skills...

LOL. Just kidding. Like the new ramp for her wheels? Bob the Builder (an amazing neighbor) built it for her earlier this week...

Pretty cool, huh? Happy Friday, everyone!

And now, for something a little different...

2010-04-25T15:11:00.000-04:00

Hello Gorgeous Ones! This will be my last post, for a little while. I am handing over the blog to crazy lady, to give her the opportunity to post her journal from the spinal cord injury rehabilitation unit at Kaiser Vallejo. You know writers-- they may be restricted by paralysis, swelling, pain and angst-- but, they always find a way to note thoughts, feelings and impressions. Crazy lady has many scraps of paper (some of them from food trays and old prescriptions!) she used to write about her experiences in rehab. We discussed, and I agreed-- it would be cool to share those experiences with my beautiful "fans." You have been wonderfully supportive during this difficult time in our lives, and I figure, "why not let my crazy lady share her struggles and milestones?" Some of the stories are pretty graphic, and some of the experiences (especially moments with the medical team during seizures, AD, pain episodes, and autoimmune flare-ups) are harsh. There are incredible moments of joy, however-- and, the powerful human spirit often makes-up for the challenges caused by surly nurses, arrogant doctors, and rehab's reluctance to encourage human connections. (Crazy lady was even told by one nursing supervisor to "mind her own business" and "stay out of people's lives" when her roommate was having a difficult morning and needed help--but, hey, more about that incredible incident later!)

Before I hand over the blog, I wanted to say a few things...

...THANK YOU to Lisa the Cat Lady, Cece the Crazy Bitch, and Popeye the Wonder Dog, for keeping folks posted on events following the surgery.
...THANK YOU to the Federal Government for awarding crazy lady her disability. Yes, miracles do happen!
...THANK YOU to the Kaiser Vallejo rehab facility for pushing, torturing and challenging crazy lady, on her road to recovery. She will forever mumble "suck the gut and tuck the butt" when she needs to "center her spirit" and "focus on the moment."
...THANK YOU to Judy, Tyler and their wild pack, for taking care of me and giving crazy lady piece-of-mind during her hospitalization.
...and, THANK YOU to the wonderful readers of my blog, who have sent well-wishes, Glee music, MST3K DVDS, Black Adder puns, and beautifully knitted caps. You are AMAZING.

Luv,
Sugar Sweet
(and, of course, my crazy lady)

Say goodbye to my little friend

2010-04-24T20:21:00.000-04:00

I'm baaaaa-aaaack! Within 24 hours, I spent precious time cuddling:

Snookling:

And, burying this critter (plus some siblings) in the back yard:

Why? Because I can. Crazy lady is "fit to be tied" since she is unable to stop my return to wicked habits. Ah yes...I think I miss the resurgence of my prey drive more than crazy lady! Of course, once she gets her new wheels (the off road version of a slammin' wheelchair), I'm toast. I know it-- she knows it-- we all know it. Do I care? Nah. I'm just happy to be home with she-who-must-be-obeyed and fresh munchies.

(this booty shot is for you, Wild Dingo!)

Home at Last!

2010-04-23T23:17:00.002-04:00

Happy Birthday, Crazy Lady!

2010-04-15T20:53:00.002-04:00

It's Crazy Lady's birthday today. It's also the day she finally arrived home from rehab, which I thought was a fitting birthday present. When I called to congratulate her, she wanted me to let you all know she's doing fine. Tired, but fine. Apparently, adjusting to new seizure medication and learning how to walk with a walker is exhausting. Kind of like training for a marathon - you know it's making you stronger, but it would be a whooole lot easier to get through every day's workout if it wasn't so difficult and tiring. I know a little about how that feels, since I spent all last winter training for a half-marathon, then most of the last three months training for a bicycle time-trial series that started this week. Crazy Lady and I were able to compare notes on what it feels like to be end-of-your-rope exhausted. It was quite a cheerful conversation.

Let's see, a couple of other things...Crazy Lady wants you to know that she will be posting the diary that she kept while in rehab on Sugar's blog soon. And, even better news, Sugar gets to come home to be with Crazy Lady this coming Sunday. Lucky dog.