The FRIDGE DID IT!!!!

9/30/12

9:53 PM PST

“The FRIDGE DID IT!!!”

-Crap.

This fridge SUCKS: THE WHOLE 2ND SHELF ON THE DOOR JUST COLLAPSED AND CONDIMENTS FLEW EVERYWHERE.

LIKE, CRASH SNAP BOOM POW ~OWWWWWWWWWWWWWWW….

There goeth my Asian Sesame dressing, empty.

Goddess dressing, possibly finito.

….That’s like $15 in dressing.

(I nvr thought I’d worry about the cost of Grey Poupon, people, really. ….what a turn my Glam Life has taken.)

But we adapt. Adaptation?

It is nature’s Valium.

(I’ll have a side of Xanax with that, please….)

*

Thank God for hand me downs and extended warranties.

I have such a bloody dysfunctional fridge. This is a hand me hand him hand her hand his stepsister’s cousin’s best friend’s gay roomate from college’s fridge.

Talk about a hand job. NO! Head. OUT OF GUTTERS, I kid u not! It’s the hand-me down equivalent of a mind fuck…ok. that came out wrong too! Crikey….it’s like ………a fridge that seems to have stepped out of a scene from “Hogwarts.”

Or maybe from the Brothers Weasley and their Magic Shoppe: The Fridge That Dances at Night. Or spews GREEN SLIME When u open the door.

~Idk. I’m bloody tired.

The fact is, it’s a mess, there’s no room, and it ….pees.

(God, think, all the times I blamed Benny for accidents he didn’t make: JEWISH GUILT! JEWISH GUILT ATTACK!!)

I mean, what would u believe? A 137 year old Bichon Frise with ….continence issues? Who happened to station himself right in THAT area of the kitchen???

~Or a stationary piece of hardware?

~”THE FRIDGE DID IT!!!”

Really???????

*

Speaking of my beloved Boy?

….. I’m wearing Benny’s ashes in a lovely pendant round my neck. ….Into my cleavage, haha. Actually, closest to my heart.

Yes, I feel a little like Angelina and Billy Bob (they used 2 carry each other’s blood in vials on matching necklaces when married ………creeeeeepy much?????)

~but hey: his soft beautiful hair wouldn’t FIT into the darn thing. And frankly? Drew Barrymore once said if she predeceased her pooch, she wanted her Cremains sprinkled onto her dog’s Alpo, so she’d “always be with him.”

(That’s just WRONG ………I’m thinking about once Rover there uh, processed his food? YUMMY!)

*

So sod it.

I’m shameless anyway: I loved that dog and this brings me comfort…

I wept 3x today. I threw away his big pink Piggie toy that went “Sqwonk” when you squeeze it. And his cow hoof. And his yellow duckie. And a weird blobbie toy that sounded like it farted when he squeaked it. (Thanks for the toys, Dad: u gave him the BEST CHRISTMASES EVER!!!)

So I threw a few balls of cotton, string and memory away….

Or at least, not the memories.

Never those.

-I can only change the life we had together in tiny doses.

I cannot keep this process straight: grief is so chaotic.

I actually LOOKED at the peeing fridge & started weeping.

Weeping.

After all that mess….

The power of love is a funny thing.

*

The weeping was easily explained to the kiddos. ~who looked worried to see me bawling again ~ when I was able to blame it on the broken shelf.

So….

~The 3rd shelf already snapped off. So we LITERALLY HAVE SHRINKING SPACE IN THERE!

(AGAIN, HP THEMES R SCREAMING AT ME! HARRY POTTER!)

Of all the things I’m having to slowly let go of, to change?

I think i’d be weeping tears of JOY 4 a change, if I got the opportunity to toss that DANG FRIDGE OUT OF MY 2ND STORY WINDOW!

*

The fridge is ……I feel so ungrateful ………well, SHITE.

It leaKs water daily.

The crispers threaten to spoil beautiful fresh produce:

So.

What’s A girl 2 do?

~Charge a French Door stainless steel number?

Oh god …………I think I just had a little death…. household appliances = porn 4 chicks.

What do I do?

~Open another line of credit?

I think I’m all tapped out.

Yup.

Affirmative.

(Did I mentio RENT’s due tomorrow???)

Hey! MAYBE I’ll GET ONE FOR MY BIRTHDAY!

(It could happen. Along with the Laptop I so desperately need (I WRITE my blogs ON MY ANDROID PHONE, GUYS).

It could happen.

That, along with my Million Dollars & a Pony.

Good Times…

xox

Bee

NEKKID

15 September, 2012

NEKKID

OK. Will someone please tell me WHEN it got to be September?

My birthday is scary close. I stopped having fun with those when I moved from Vermont and Larry and I celebrated them for 7 straight days. Kinda like Hannukah. Only ..not. Now, we have Rosh Hasashanna and Yom Kippur right round the bend, literally…. Meaniing another HOLIDAY DAY OFF FOR the bebes.

………..Yay?

Yep. Holidays and Birthdays.ANOTHER ELECTION ONLY WEEKS AWAY. WOWZERS. Yes, everyone is suddenly developing opinions about politicians and taking sides.

I find it hard to keep up in general. On good days I try to grab the major headlines and get a few major pieces absorbed. ….Like the recent drama with Mitt Romney’s running mate and the Abortion drama? YIKES. (HEAD FOR ZEE HILLS!!!!!!!!!!!!!!!!!!!)   And you know what drives me NUTS? President haters. Yes – those people who know NOTHING about the President or his policies, but hate it him because it’s popular at school. Seriously. Ask any 13 – 16 year old what they think of Barak Obama. Chances are, they will have a hate on for him.

Which I deplore. Because you can’t get political for a few weeks every 4 years and call yourself informed. That having been said, GET OUT AND VOTE!  VOTE. Do it by mail. Do it in person. Just Do IT.

Yes. I am getting riled up over that topic. I think I am getting aggravated by the smell of cleaning products. (Never thought I’d hear myself saying THAT! Usually if anyone other than ME is cleaning, I throw a freakin party. But moving on….)

Yeah. Moving on.

Life just keeps speeding on by. I started a diary called “How to Slow Down Time.” …YEPPERS! I actually did. That got lost in amongst the bills and hospital records, EOB statements, unopened mail, call logs and emails.

How I wish I were a kid again and able to feel the thickness of the moments, moving in slow motion, every dance, every note, every chore or audition or performance commanding my full attention. I miss the … nuance.  That absolute concentration – being in the moment. Moment after moment. (Many might find I am looking back with rose colored glasses…) . My high school drama teacher, Trudi Cohen, (whom I am desperately trying to find, BTW) used to say I was a great actress, but I had to focus more! (I was 13, ok?)

These days, it seems my attention is split between all the medical stuff I tell you about in my blogs and vlogs, and in the news you get, the news I read, the books I chew through and my recovery…. between the physical therapy-slash-TRAINING I am doing and the fundraising efforts about which I refuse to lose hope……..though I feel a little bleak, between you and me, given the fact that an article just came out in the GREENWICH TIMES about me (Hi. Small Paper. RICH CITY.) What’s worse????????? MANY of my RELATIVES LIVE THERE.

Feeling a bit dissed here, people.

Seriously. I am.

But moving on ……… I can’t get too glum. I have hope. I have to.

SO I am busy ………recovering. Which some days means HAVING to let myself sleep when I really want to be DOING.

Between texts and calls and Social Media en Masse. (I am presently obsessed with “Instagram” and burnt out on “Words with Friends”.)

…How do people keep up?

Speaking of ………. I just missed a ton of my friend’s birthdays. Yes, the Jewish guilt is kicking in in full force. lol

Sorry Guys! I’d blame missing your special days on the VD but that has to be getting old. (Vascular Dementia, for any newbies). It’s true, but still… Must be hard to hear over and over and over. (Kind of like being close to me! Having to say the same things over and over and over because I forget. AWKWARD!!!!!!)

So. I just wanted to say HAAAAYYYYYY!!!!!!!!!!

I am in an okay mood at the moment and pretty perky. I might be a bit high on fumes, as Brandon, 13, decided that spraying LYSOL (to which I am violently allergic) would be a good way of convincing me he’d cleaned the house (HA!). But other than that ey chun…….. really. Things are okay. I mean, I’ve been on a nearly two week pain bender and that blows REALLY MASSIVE MONKEY CHUNKS. Hideous, really.

But at this exact moment in time, my pain medicines are working and I feel ……..oh ——-KEVIN just opened the door to my room and HI. Brandon is standing in the hall. And I’m sitting on my bed, typing this, with my bathrobe open. (WHAAAAAAT? I was about to get OUT of it!!!!! Sh*t.)

See, I am supposed to be taking a bath right now. It’s got essential oils and Epsom Salts in it. For me! For my pain.

For the pain.

…Which is coming baaaacckkk!!!!!!!!!! Grrrrrrrrrrrr——really? Yes. The magic 4 hour mojo is wearing off. SUPER. NOW I really, REALLY need that bath.

…….I’m just gonna skulk on into the loo, now, where my tablet awaits me (on a stool, out of reach of the water, don’t worry!) and my Eve Dallas novel comes to an end. I’m gonna drop the robe, and gingerly step into that steaming ……….tepid water..

Buzzkill. But fixable.

——————-What IS IT with me and getting “caught” starkers, anyway?

OY.

—-Happy Saturday Night, America. Happy …Night, World.

xox

B

BENNY…….. MY BABY BOY

BENNY …………MY BABY BOY

Some of you guys know – especially those of you on Facebook (find me! I am “songbirdLA”;) – that my beloved Dogger, Benny “Gooddog”, the Dude who has been by my side for a very long time, passed just over a week ago. Thank you to everyone for your kindness, your words and deeds. They have helped.

I wrote a blog about it. But since I haven’t BEEN blogging much, and I have been FORGETTING to email my BLOG GROUP the content of the blogs ………I realize news spreads like, well, Molasses on a cold Vermont Day. You know, the kind where you go outside and your boogers freeze? BOP!

You know, I started out to write something so totally different and fresh.

But that happens with me. I get distracted.

Yeah. I meant to write a whole different blog. I did. I was crying quietly about my little one. I miss him so much. People tell me I will see him again. They say he is in heaven. They say a lot of things. I think in time, I will come to my own terms about it all. Right now, I. JUST. MISS. HIM.

I want it all to rewind ……….so I can hold him one more time. But that ain’t happening. So.

On a happier note? I want to share a few pictures that move me. I hope you like them:

http://rebeccasrecovery.webs.com/apps/photos/album?albumid=13932689

MOMENTUM…

…………I finally chose his “Urn” last night. That was hard. It was so real. I will order it tomorrow. Dr. Brown (Best. Vet. Ever.) has his “woobie.” We left that with him, so he would have something with him thru the last part of this leg of his journey. I also bookmarked for purchase a little necklace that has a pawprint on it so I can put a lock of his sweet soft, clean hair in it.

God BLESS you, Benny. You are, er….were….. the BEST. DOG. EVER.

I love you so much. I miss you so much.

Thank you for being my bestest Bichon Buddy, in the whole wide world. You brought me so much joy. You grew up with me. You left me with a lifetime of happy memories. I will treasure you, keep you close to my heart, always.

I will leave with this memory:

Benny loved to “dance.” It’s a Bichon thing.

I used to play the song “Somewhere over The Rainbow” (by “Isreal Iz”……the reggae one, sung by a one-time 700 lb man who passed in 1997, but whose song reinterpretation has gone on to sell millions of records posthumously. The song is profoundly touching: here was a man who knew how to “interpret” a song (if not a lyric – as he pulled a Christina and flubbed the lyrics to the infamous and beloved cover song –). I always found the fact that though Iz was Hawaiian, his take on the song was decidedly reggae: it was so … fitting, as my Benny??? He was a Dreadlock Dog when his hair wasn’t combed out, man.

We would dance to the song. I would sing it and get on my knees and he would put his paws on my chest. I’d start to sway and we’d dance. I would hold his paws and twirl him. He loved it. LOVED it.

…..I sang it to him, quietly, one last time, together, when we said goodbye.

Goodbye for now, lovemuffin. I am so grateful to have loved you.

***

FINALLY??????? TO END ON A HAPPIER NOTE? AN ANECDOTE (er-short story)

As Jay Jones, of Jay Jones, INI*, who I mentioned above, an Angel who has come into my life to bring me safely back into the world of exercise (peep him! Hire Him! He is the best!) said to me yesterday:

”Bee, you’re an athlete.”

Do you have any idea what it felt like to hear those words? Dear Lord. I had begun to think I would be relegated to the soft and puffy for the rest of this life, despite a vow to do everything in my power to assure it could be otherwise. He also told me I am so much stronger than I realize. (This was after a grueling, nearly 2 hour long session during which I nearly threw up THREE TIMES. My left side (again, having RIGHT sided MM symptoms, scary) was weak yesterday. It was strange and painful. I pushed through it. I tend to do that. —Push thru. Not puke.)

I am stronger than I realize.

I think I need to think on that some more.

***

Instead of an “Accident Wating to Happen” … I’d like to be an athlete waiting to happen.

I think I am. It’s just a matter of time. And help. Miracles. More help.

Energy. Pushing thru the pain. Patience. …The brain doesn’t heal overnight and it certainly doesn’t restore those precious pathways which are required to re-activate the BODY – the …. muscle memory, or ….well, memory in general. There are parts of my brain – large parts- that are just dead. That sounds so gory! EEEWWWWW!!!! MY GRAY MATTER’s GONE BLACK!

But it’s true. So I have to let time heal and restore. At the same time? I have to work harder than ever to MAKE new pathways exist, so my brain can “talk” to my legs, so I can maintain better balance, so my right leg doesn’t buckle, causing many a fall.

It’s a long time coming (back). But damn if life itself, life on life’s terms, doesn’t kick my ass on the regular just as hard.

XOX

Bee

(*think personal trainer meets physical therapist meets long-lost brotha meets kick-ass mentor)

C-C-C-C-C-CHANGES…..

“C-C-C-C-C-CHANGES…..”

10 September, 2012 12:30 pm

I’ve referred to myself in the past as “Calamity Jayne.”

Reading back on diary entries, blogs posted and not, and other notes about the last six years of my life, I see how lucky I have been to not have cracked my noggin open (accidentally, that is. Lord knows it’s been opened!). I’ve fallen, tripped, slipped. I’ve been paralyzed, in a wheelchair, in leg braces, used a walker…. I could go on. I swear, I should have just worn a helmet.

(But that would have messed up my hair.)

Yes… a helmet. With giant yellow flames and orange graffiti that screams:

“WALKING DISASTER! ALERT. ALERT!!!!!!!!!!!!!!!!!!!”

For all u pop-culture junkies out there, imagine this combination:

I am … Larry David, a la “Curb Your Enthusiasm” and the fictional klutz (pre-Vampire, that is) Bella Swan combined. (Scratch that. I am neither rich, like Larry, nor a vapid perennial nineteen year old. Like Bella. Bella SWAN: how ironic is THAT nickname???)

Yes. As if the other side effects of Stroke, MMD and TBI haven’t been enuf , another freakin’ irony of post-stroke life? I’ve gotten clumsy. AWKWARD. Unfit.

So, I was never gonna dance the lead role in “Swan Lake,” people, but I’ve been, all my life, a very physical person. I’ve danced, ran, played school sports, been active in theatre…I was in a Afro-Carribean Dance company in the late 90’s

I spent years studying the history behind Hatha Yoga, learning Sanskrit, and devoting my heart and soul to the art and craft of Ashtanga Yoga.

Being typically paradoxical, I also boxed. BOP!!!!!!!!!!!!!!!! That’s me. Meditating one minute: sitting pretty in my“OMMMMMMMM” getting my Zen on, the next, dancing around like a Crazed Monkey, practicing my upper cut, right hook and jab.

I learned Tae Kwon Do. I did a lot of weight training, swimming, hiking and biking.

Just recently, as I have experienced a multitude of disasters, which I’ve chronicled above, so have other changes taken place. I am running out of steam to chronicle them here, but I will say this: between the good and the bad, I am somewhere in the ….middle.

Much like my life story.

Here is a quick run-down of a few of the C-C-C-C-CHANGES that have gone on this past month.

1.) Gini Watson (Kevin’s mom) came to visit. We had a blast. REALLY. That warmed me up. It also gave me an idea of what it might be like to live with a caregiver. More on that later, but it just seemed to flow. That gave me mad hope. I am holding on to that. (I will include pix of Gini and the family next time- esp her with her boy and the kiddos – she will treasure those, as will we).

2.) Mom continues to advocate like crazy for me, helping with advocacy stuff (and caregiver stuff) from 2,000 miles away. She has been focusing on two areas primarily:

a) Getting me in to see the many MDs I need to see before I lose my health insurance on 31 December of this year. AAAGGGHHHHH!!!!!!!!!!!!!!!!! Most important are the appts with my new Neurologist, an “Epileptologist” (to see about my seizure stuff), and then —for another day ——– stuff having to do with the jaw surgery and eye surgery I have to have before that fell December Day cometh…

b) MEDIA: She continues to call, write and generally harangue. This has begun to yield results. There are 3 papers interested in my story as of now. More on that later. *** Promise.

Mom’s been doing all this – with a lot of support from my DAD, and my siblings – despite their own michegas. Their own drama and life stuff. Mom’s been sick. That she fights so hard for me blows me away. God bless the Mothers.

3.) ARTICLE IN THE “GREENWICH TIMES.” Alison Mango wrote it. It came out 1 September, 2012. More on THAT later. PLEASE READ IT. (Thank you, Alison…really, more on that later!) and HI!!!!!!!!!!!!!! to my new friends in Greenwich! Especially HI to my Mum’s old-school BFF- TONI! HI!!!!!!!!!!

4.) I’ve reconnected with more and more friends from days past. This has been amazing and their support has given me new energy to fight this fight. THANK YOU. I also have an actor friend who might be “endorsing” my cause. Prayers again. Fingers Crossed. Sign the Cross and Bless the Buddha.

5.) Benefit Concert and other Fundraisers and money-raisers in the works???

a) Daz Hurst, my former guitarist with Betty Power, has taken on House of Blues to work up some miracles. He has a genius business plan. This will entail releasing a limited edition copy to the public of “My Red Telephone.” (WHOOOOOT!!!!!!!!!!!!!!) And much more. Daz doesn’t want to raise a few grand. He wants to make it possible to write the check to “Rehab Without Walls.” —Amen. I am praying to all the deities I usually mention that this happens. I hold onto hope.

b) The other Fundraiser and money raiser events are ones that a few friends have begun working on. More on that, too. The idea there is to raise funds to pay for a Caregiver for a year to 18 months and to help with general cost of living bills. (REALLY. WHO IS GONNA HIRE SOMEONE WHO BLACKS OUT ON THE JOB????????? I have so many comedy bits that I want to include in these blogs but I’ve been awful serious lately. Like, for about18 months, lately??? —To be real, I think I got really depressed when the surgery like, saved my life, but didn’t “fix” me whole. I need THERAPY!!!!!!!! (the kids keep playing that song—grrrrrrrr….) Anyway, I got so down I kinda stopped keeping up.*** That, coupled with TIA’s, withdrawl from medications, trying new medications, pain pain and more pain ……….. trips to MD, Stanford, rehab, life, a sick Dogger, a Sick Bee…………Life……………..

***Ha. That was unintentional.

6.) After a 3 week break (due to one mother**!!!r of a TIA, and Jay’s schedule (the nerve, having a busy life! Lol), I’ve been blessed to have resumed working with Jay Jones, who I mention below. Jay is a miracle worker who came into my life this summer, and decided to take me on as a client. He is a personal trainer on paper but for me, as I tell you below, he is much more, especially as my situation is so medically ….tenuous. He takes care of me even as he pushes me to my limits. Thank God and Thank you JAY for giving me renewed hope.

7.) SYNOPSIS of this stuff: There are absolutely other things I have omitted here. But really? Who’s still reading? Lol

8.) I NEED AN EDITOR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

There is such a book in this. I have such plans, you guys. I mean, really. BIG. I am not going down quietly and I am not going to recover and fade into the background to live the rest of my life.

I have faith that with the help of all the above –mentioned things, along with Jay’s help and the continued help of my family, friends, my support system, and, I PRAY, a wider circle of support that these efforts might yield the support necessary to enable me to begin the “Rehab Without Walls” program ASAP, and to hire a caregiver for even 4 hours a day, 5 days a week — and the cost of living stuff would be good. But I’ll eat Ramen and live with 16 people in a studio apartment if that’s what it takes to get thru this with the above stuff. No really. That would be BAD for recovery.

I just ………….want to recover. I just ………. Need that last push to get me through. I want to live the life I was destined to live. I now know this all was meant to be part of the story. It’s not unreasonable to want to step into the next phase, is it? I feel like it’s time. I move slowly these days, peeps. It’s not like I’m rushing back on stage or to the studio. Though I am WRITING songs like mad. I just need to find a writing partner. find a writing partner. It is too much to be re-learning to play guitar AND compose the music all by myself, AND record it, too. SO ……keep your ears peeled for me, would you? 

Finally …..

 

XO

B

LABOR DAY… A(NOTHER) PARADOXICAL HOLIDAY WEEKEND….

September 2, 2012

10:15 AM

-It started with an itch. A sunburn itch. The worst kind, IMHO.* It hurts to TOUCH it but u just can’t NOT scratch it.

And these are BAD BURNS:

This is the 1st sunburn I have had in my adult life.

***

I happened to be between dreams when I got the itch to scratch. …And thanks to my semi-lucid

state I woke up to put Aloe Vera on the burns.

what’s the diff, u ask?

My reply:

PPPPPPPPPPFFFFFFFFFFFTTTTTTTT!

(Possible spit included*** ???)

I have been up since 5 AM, pottering about. Sorting laundry. Folding what I could on my own. Clothes, towels, linens. In the dark. -hi. That was just a disaster waiting to happen, really.

Most peeps, with family, friends…

BBQ, beach.

AND I ……..AM HOME.

AGAIN.

~Thinking of it, I don’t have any plans for the long wknd.

It just occurred to me!

I could ….ask someone….

“Hey! Whatcha doing this wknd?”

(Now that it’s half over)

When u r homebound like me, u kind of grieve when everyone else resumes “normal life.” They go back to work, school, whatever they do …and u r alone. Again.

I am not a happy lone wolf.

I need a pack.

And without my beloved Benny by my side, always there to reassure me that I am NOT alone ………the truth is a slap in the face. A bucket of cold water during a hot bath.

I feel so …..lonely.

I need more than this.

…I miss my family & friends, gatherings on the East Coast–

I miss hanging with my buddies here in LA.

And u know? I AM stepping out back into the world.

It’s just such slooowwwww going!

God.

I’m sure there r 10 different things going on today I could’ve done -MAYBE STILL CAN DO! – this would also be GREAT 4 Kevin & the kiddos: they need 2 start meeting UP w other peers, here in their new city!

~Sickness does not, it cannot, for me, anyway, have to equal a total withdrawl from life – just the courage to take baby steps back into that life.

So I guess it’s on me. Isn’t it?

I want to say it’s scary, but I am more powerful than that.

I WANT IT.

I NEED IT.

SO….

BRING IT! (& don’t forget my Cane, please…)

xox

B

* IMHO = In My Humble Opinion (Pronounced “eeem-ho”)

Another good one we use a lot here, at Chez Buote-Schmitz??

“OTAAT” = One Thing at a Time

(Pronounced: “ooot-aht”)

PS: I will let y’all know how it goes…

GOOD NIGHT, SWEET PRINCE….

30 AUGUST 2012

 

Wednesday, August 29th. I’ve lost my beloved partner in crime, the Yin to my Yang, the one who has been here through it all:

Rise.

Fall.

(Ouch).

Surgery.

Recovery.

(In progress).

My beautiful little Benny.

Thank you to the Posse, who made these past few years so comfortable and happy for him. He was running and playing and wagging that fluffy white tail …up until his passing; before he slipped into his last “happy nappie” (on this plane).

To My Parents, who have loved Benny as their own. (So many of you did).

To my sibs, Jen and Brian…to My Cuz Dana… To “Auntie Me.” To Ted & The Brogan posse. To Lumberjack Rick (hey, Boo) “The Brat” & The Hopkins Family, to Chow Bella, Dr. Howard Brown (BEST. VET. EVER), to PAWS, LA, and the AMAZING VOLUNTEERS who have been a part of our lives (to Christine “At” Kelly, for your YEARS of loving assistance – u the best! & thanks to Georgia & Wendy). To Ian H. JD. Ron. To Holly.

And most of all, to his “packs” – dogger and human, alike:

To Kevin, Brandon and Mackenzie Buote -Benny found his people, at last. You gave him all that he wanted, needed and more.

And God Bless you, recent travelers from the East, who came to act as caregivers to me, but gave us all so much more: both Mazie and “O.M.G.!!” – “Gramma Gini” – for the remarkable loving kindnesses you showed us both with your words and deeds.

To Benny’s BROTHER: Maxer Man. To Frankie (“Frankenstein” the Cat); To Murph, who is fighting for his own life even as we speak; Lee Lee; Bodhi; Abby; Cassie Bear & Bailey; Sophie; Harley and Elmo.

Thanks to all of you.

Your kind words are a salve on a very deep, very raw wound.

***

After a few hours of wailing, alone with Kevin who -mercifully-happened to be home when this afternoon unfolded – of sobbing and crying, asking “Why???” over and over, I felt the rush of attachment, the crushing rage and denial burning within turn to a shocky state of cautious advancement towards acceptance.

I sensed the thrash and roar of pain dull some to turn down just enough to get still inside. I crooned to him, as I wrapped him up, a little at a time, getting myself on a (mostly) even keel again. I had a job to do: first, to tend to my little guy. One step at a time.

And then, to get composed.

Ish.

I had (and have) to be here for Brandon and Kenzie, who would arrive from school, anticipating that jingle of his collar and the “thrump, thrump” of his feet as he ambled down so many carpeted stairs to greet them at the door.

They would be expecting to walk him, feed him, play with him.

And oh -my heart broke for them more than my own.

These kids, who need me now *especially* as they look to me, and their father, to guide them thru our collective mourning, to help them to learn to cope with their unique and individual grief.

***

We have lost one of our pack.

This will take time…

And now? I am kind of … in a numb phase … but so profoundly sad beneath it all. Sad. And *so* moved, SO full of gratitude for the many adventures we’ve traveled, across the long years together.

Good LORD, Benny: I miss you so deeply already. I will be sleeping with your blanket as I take the morning’s quiet to let my soul breathe, to recoup from a sleepless night.

God willing, I shall dream dreams of you, replete with your infectious joy, my baby boy.

Peace to you, ALWAYS & FOREVER, my little man. I love you.

With Love,

Rebecca (B)

WHAM, BAM, FRANKLY, M’AAM…

“WHAM, BAM, FRANKLY, M’AAM…” (you’re a walking disaster)

14 August, 2012

The past week has been comprised of one Bee-sized disaster after another.

I am a walking freaking LAWSUIT.

An ER trip, PENDING one missed stair. (Pun intended)

First, I fell, going down the stairs to take my dog out. I hit my head, got knocked out and dropped the dog. He won’t come near me now. I feel terrible because I had no business trying to get him down several flights of stairs – much less in the middle of the night – when I myself cannot safely make such a trip. I feel horrible. I feel especially horrible because I have already played this tune once before this week. With The DOG. AT NIGHT.

(I didn’t drop him that time. Sigh…)

In embarrassing moment of my life #632, I fell off the toilet. Again, in the middle of the night. (WHAT? I was TIRED!!!!) I had the door halfway open, and started getting sleepy, so I put my elbows on my knees for support (aka MY CORE MUSCLES ARE SCREAMING “HELP ME!!!!!). The seal is busted, so the toilet moves. You can see this coming, right? One fell move and …well….I found myself yet again, intimately acquainted with the floor. The cold tile floor. In the dark. With my pj bottoms around my ankles.

Ah.. I am ever the Charmer.

(WHY do I POST THIS STUFF?????)

Speaking of …. The charming landlord who owns this pad is slow to move on things like, oh, busted loos or clogged tubs or broken windows. Or leaking toilets. Or busted blinds. Or a washer that EATS clothes. Literally. Well – chews them.

In this instance, as I shared so ….intimately, the seal on the toilet is broken, so it slides all over the place. You can literally go from the right to left side. Not that you should. Because the seal could cause a massive leak, as I understand it, resulting in a ton of waste water crashing thru the ceiling and landing on Brandon and Mackenzie’s Bunkbed. WHAT A WAY TO WAKE UP. Kenz sleeps up top .THAT would suck. (Talk about intimate, bleeeekkkkkkkkkkkk!!!!!!!!!!)

In a continuing House of Horrors situation, I’ve now overdosed twice in a week on my medication. I’ve forgotten I took it and taken it again too soon. This resulted in me breaking out in egregious hives. (Not that hives are ever a good thing). But this is some scary shit! REALLY scary. (From now on I am writing down the precise time when I take the meds. No more relying on other people to remember for me, or God Forbid, myself….)

Finally …. Now that I’ve gotten the “Wham” (falls) and “Bam” (more falls) out of the way, and have moved on to more drama …. I have to close out with this honest truth.

Rent is due and I can’t pay it. I am so scared.

This much is clear Has been clear. Contiunes to be clear.

I need help.

…I just *HURT*

My body feels like it is being burned, from the inside out. Eaten. Like a cancer. Bones, aching so badly I can hardly bear my own weight. Skin so sensitive, it hurts to be touched.

Sometimes, I just break down. I cry. I just ……….. who can take pain, day in and out?

And when the body pains finally abate? The CLUSTERS are there to take their place.

It’s like a warped dance. The pain is my partner.

I’d like to toss off my dancing shoes now, please!!!!!!!!!!

…And you know what really hurts? I mean, emotionally?

I feel like this might really just be how it is.

You know that saying: “It is what it is” ???

—I truly don’t know if I can live with that.

***

XO

B

PAIN, PAIN, GO AWAY…

Tuesday, August 07, 2012

10:24 PM

“PAIN, PAIN, GO AWAY…”

 

For a change (haha), a quick update. HA! Just kidding! Started off that way and then I took a few days to finish it and now my newly (re)acquired linear skills have pretty much ………yeah. Let’s just say, I appreciate you bearing with me. I don’t think this is too bad. (GREAT SELL, GIRL! GREAT SELL!) I just wanted to let y’all know the basics, the latest. I’m back in LA. My surgery was CANCELLED. Or postponed. IDK. It didn’t happen. Mom came. And Left. She was a stellar caregiver ….and I am still cranky that she’s gone. I loves me my Mommy time. So, in all, it’s been about 2 weeks (and change) and I’m still reeling, to be honest. But I’m starting to get back into a rhythm of sorts.

But, man. SURGERY. CANCELLED. W. T. F. ???

Okay. Truth? Trauma and all aside, this is both a good and bad thing. You can check out the video I posted (vlog) on the 3 rd of July for more deets, or wait for the written version. Bottom line is, I have other brain drama to deal with for now. But my right brain is getting enough blood to function at the moment, and this is a good thing because it means I am …kinda “stable.” (In context, of course.)

Being stable means this is the best possible time to begin to try and establish a “new normal.” I’ve done what I can on my own but I need professional help to get to the next level – one where I can work again, play again, try and be more “me” again. The great news is that I am the “perfect candidate” according to both my Doctors and rehab therapists, for the program “Rehab Without Walls,” itself… I know, as I have been referred to this amazing 18 month kick-ass, life-changing program, and accepted by the Rehab’s Intake Coordinator, over six times. (and this happened when I really WASN’T STABLE).

Because insurance doesn’t pay for it, and believe me, I have tried – I’ve appealed the denial over 4 times – we have begun a campaign to make it happen through other means. If you have any interest in helping with this, whatsoever, please, contact me or anyone on the Team. This is a critical time for me and I want to take advantage of it desperately.

People ask me frequently:

“So, what do you do with your days?” I struggle to answer this question time and again. As I’m kind of like a car whose motor never stops running, you can be assured I make good use of my time. But this is why I am so adamant that this Rehab begin: I’ve done everything else I can do to get “functional” and “back into a routine” and this is the final step. Rehab Without Walls.

If anyone can get through it, it’s me: I just cannot give up. I won’t.

That having been said, you must understand that I will do this under the most extreme circumstances. Put me in an Igloo in Alaska and I’ll talk my way back to LA to RWW. I need it. It’s just that simple. I tell you this knowing that it will be more brutal for me than most because on top of the issues I already face, there are the ones I am just now beginning to face down.

At the moment? They are pretty dire. The pain I feel is like ….a fire burning throughout my body, limb to limb. Bone to skin. Joint to Muscle. I HURT.

…. I am fighting to make it through each and every day and the primary reasons for this are threefold: I struggle with pain, severe pain, right now. Due, my MDs think, to the last surgery I had, I now have yet another wonky diagnosis: “Central Pain Syndrome.” YIKES!

It’s too awful to describe, as I am experiencing it at the moment. To give you a sample of what it can be like, however, I can tell you this. I tried to take Benny (my beloved Bichon Frise) down 3 flights of stairs in the middle of the night so he could do his biz-nass. Normally, the kids do this for me. Or .. Benny just loses it. Literally. I’ll be sleeping and hear:

“PSSSSSSSSSSSS…” and I know – NOT AGAIN! But whatever. In Dog Years, he’s like 100. If anyone’s deserved the right to have the occasional piss on the carpet, it’s Banjo.

There are days when I cannot WALK a flight of stairs because it is so excruciatingly painful.

So this was a big deal for me. Anyway, Banjolino (another one of Benny’s nicknames) and I were vertical one minute, and the next, I was sort of ….angular. I think I hit my head so hard I blacked out, temporarily. I fell. Thank God I kept hold of Benny. But I’m now sporting a nice black eye on my left side, and have some gnarly bruising on that side of my head.

Good Times.

So …. Thank God, Jesus, Mohammed, the Buddah, my next door neighbors, and this new author I really love, that I have a new Pain Management plan, but it hasn’t been implemented yet. I move slowly. But I am making steps towards that – I see my PCP next Friday, the 17 th , and we will begin the process of beginning to make it happen.

 

Of course, I am still having Brain Attacks. To complete the trifecta of medical Michegas, the Brain Attacks (whether mini-stroke or seizure) then cause my “VD” (vascular dementia, people – get your heads outta the gutter!!!) to go into a “downward spiral.” This means that whatever progress or baseline I have reached is lost temporarily again as my brain struggles to make sense of past and present, short and long term memory, etc. It affects my daily living in ways that are both mild and grave. I continue to be a paradox.

There is so much more, good and bad of course, but that’s the crux of it. Oh – and though fundraising efforts – FOR THE MOMENT – have essentially come to a halt, drips and dribbles still do come in. I am grateful for every single one. WE RAISED OVER $5,000 in one MONTH. My trip was covered almost totally, leaving about $2,750 left in medical bills (to be continued). THANK YOU, friends and family, especially to the small group of you who put your asses on the line for me: Kevin, Lily, Mom and Dad, Jen, Brian and Wendy? …. It paid off and thank you notes are still forthcoming. In the end, I miss being connected to you guys. I love you.

 

 

OH: AND I HAVE CONFIRMED THAT JAW SURGERY IS BOTH NECESSARY AND IMMINENENT. For those of you who give me the pleasure of your company, whether in person, vlog, virtual or phone, this means something big: me. With my mouth WIRED SHUT. For “months,” according to my new specialist.

(Don’t laugh too hard, or clap too loud about this. Remember, I still possess Ninja Skills. I will chase you down and whoop yo’ butt. Just as soon as I can run again.)

 

AAAAAGGGGGHHHHHHHHH!!!!!!!!!!!!!!!!!

 

XOX

B

To Read the Full Story, OR More, PLEASE: Go To:

1.) http://rebeccasrecovery.webs.com — IF YOU R NOT A MEMBER, JOIN PLEASE.

2.) Indiegogo.com/rebeccasrecovery

3.) www.sweetrelief.org

4.) www.facebook.com/songbirdla

 

THANK YOU AND GOODNIGHT!!!!!!!!!!!!!

LAUGHING (ON THE INSIDE)

“LAUGHING ON THE INSIDE”

9 July, 2012

10:30 PM

I was thinking, having just absorbed the contents of my earlier appointment with my pain management MD, of the character, Mr. Mackie, from SouthPark:

“Don’t Do Drugs …. M’kay???”

YEAH. SURE.

I’ll get right on that. (or off that, as the case may be)

No drugs.

….YEAH! Right!

I’m laughing (inside*). My tummy hurts now, I’ve laughed so hard.

Aaaahhhhhh…. that’s funny.

No drugs.

I’m sorry. Ahem.

It’s medication, people. Medication.

Treatment.

Meds.

Stuff that make-a-ya-pain-no-so-bad. (Or not.)

Chemicals that make-a-ya-brain-no-so-bad.

Drugs.

Or, as my Mom and I have joked, for many long years:

Better Living Thru Chemicals.”

Or, as I like to say, when I really break it down:

“Good Times. ….Good Times.”

NOT.

***

I went to see Dr. Barad today. She’s my pain management specialist/Neurologist at Stanford, or “Steinford,” as I like to call it (that is a pun, guys. really. Get it? Dr. Steinberg? Stanford? Oy.)

I have not the energy to say much tonight, but I will keep this ” theme” in mind for a future Blog because there have been far too many chemicals involved in the treatment and management of this disease and some of the secondary diagnoses which have required drug intervention, as well.

Some of the stories are fall down funny, heartbreaking, blunt, stark …. and all …in the name of medicine.

I am about to undergo a new series of medications for a three month trial, a gnarly set of them, which we hope to use in both a “prophalactic” and an “abortive” manner (hey – I don’t make this shit up).

That means I will try taking a few new treatments (such a mild, polite word) every day with the hope that the “prophalactic” chemicals will:

a.) build up in my body

b,) do so without making me crazy (it’s a short trip, and we all know it)

c.) work

d.) most of the time

so that I can use the “abortive” chemicals

a.) less of the time

b.) but will have success with them when I DO use them because they are, well, stronger, and more agressive.

 

If, at the 3 month mark, I’m not starkers (and in this context, I mean, like, raving mad), then we’ll stop the meds and hope we’ve broken the “pain cycle.”

If not?

We move on to Plan B: (B is for “Butt” – as in, “if that drug cocktail didn’t work, this one sure will …. kick mine”)

Plan B involves more agressive chemicals across the board.

I hope we don’t have to go there. I am WAY too sensitive to chemicals.

No joke: you can spray some “Windex” on a rag two blocks away, and I’ll break out in Hives.

Wipe down the sink with a little “Lysol” and I will go anaphlactic on yo’ ass.

(Then, I WILL send you the bill for having to replace my rescue inhaler. It’s hella expensive! Like $95 for 40 metered inhalations…..)

I take Benadryl and have to be WHEELED out of the hospital.

You give me a sliver of a sliver of Xanax?

I’m ……gonna dance on your dinner table.

 

…Yeah….

 

So.

For these and so many other reasons, the most serious of which is the fact that I cannot continue to live in this extraordinary pain – OMG I really CANNOT DO IT – I pray to GOD, Buddah, Mohammed, the several cool statues outside, and the Holy Spirit that I DON’T have to go there.

(I’d also like to have a bebe, sometime in this lifetime, and that is gonna mean being drug free. Oh -and probably, my MoyaMoya will have to be stable, too. A girl can dream….)

Either way, I will be following up with Dr. Barad —  and Dr. Steinberg — at STEINFORD — in SIX MONTHS. Six. I’ve got six months to break-a-the-pain cycle –and to prepare for another arsenal of invasive tests, scans, and microsurgeries …to watch My MoyaMoya. (And raise the money ….again ….. to get my ever-shrinking yet still bootylicious arse back to the Bay. Area.)

 

Stick with me, Guys. Things are slowly getting better. I have hope.

Speaking of …. in summary, what have we learned, everybody?

Say it with me:

“No More Pain.”

“Break The Cycle.”

“MoyaMoya, stable? GOOD. Moyamoya progression? BAD.”

 

See? That wasn’t so hard.

You guys are all experts at this by now.

It’s all really ….Good Times? Right?

And ….all in the name of Medicine.

Thanks for your continued love, your support, your heartening words, and for just being part of this journey.

GO, TEAM!

(And Don’t Do DRUGS …. M’Kay?)

xox

B

PS: THANK YOU TO TODAY’S DONORS! David Laniel and Soolin Withrow. You Guys ROCK. Thank you thank you thank you!

www.indiegogo.com/rebeccasrecovery

 

PPS: *(“laughing on the inside” – Yes, Matt Bunting, that was a reference to you. Remember when???)

NO MOYAMOYA PICNIC FOR U!!!

NO MOYAMOYA PICNIC FOR U!!!

6.30.12

In bed. Day after ANGIO.

Owwww. Wwwwww. Ch.

See, my plan was to recoup from the Catheter Angiogram overnight (ever the workaholic, even in my current state, I believed I’d be up & at ’em today…)

My plan was to go be with my peers at the annual MOYAMOYA PICNIC, an event put on, once a year, by the Stanford Medical Center Moyamoya Clinic.

Yeah…

But my body had other plans.

Fracking steroids!

I was up all night with the jitters.

All the drugs I had pumped into me, and the ‘roids ruled the roost.

No sleep.

Oh.

And THE MUNCHIES.

Bad combo. Bad!

…I should have been out COLD by the time we got back to the hotel.

What an ordeal.

By that time of night? Yeah.

Sleep was on my mind. I moved sluggishly, hardly able to walk.

My body was heavy with torpor.

The cane I use on a daily basis was of no help.

… I needed a wheelchair.

Too bad hotels don’t come with them.

Jeeeze! You can get a spare toothbrush, a razor …. They have BLOWDRYERS ON SITE.

But Nooooo. No wheelchairs.

They say it’s a Man’s World.

I think it’s a Handicapable World.

***

So, natural, innate fatigue aside, I got some pretty heavy drugs during the Angio.

….My eyelids were fluttering open & closed at times, as I finally got some relief (thank you, Versed – the drug that’s SUPPOSED to keep you alert, but causes you to FORGET.)

…I remember it all.

But I felt the sedation and it helped me.

I used a lot of deep breathing techniques to work thru the acute pain: it shot thru my body like a million pieces of burning shrapnel.

There were times when I was fairly sure I was dying, right there on the table. I’m being serious.

There were also times when I could’ve succumbed to the sedatives. But, like a brat, I refused to give in to the sleepies.

…I’m made of stronger stock, see? We don’t give in that easy. We’re tough.

(As an aside, a rather important one, my team, and especially my Doctors also needed me alert enuf to hold my breath when they shot the dye into my brain vessels and arteries.

Any movement would compromise the end result: a series of “Gold Standard” images of my brain.

The surgeon uses these to decide which arteries he will use during the bypass.

Again: Ooowww.

To keep me focused, Dr. Marx kept saying this mantra, with very dramatic delivery:

“BIG BREATH IN. EXHALE OUT. TINY BREATH IN. aaaaaanddd:

DON’T MOVE. DON’T BREATHE.

DON’T MOVE. DOOOOOOONNNNN’T BREATHE.

AAAANNND ….breathe naturally.”

…..it was all I could do to not crack up. For realz.

It was ESPECIALLY hard, by the way, because the staff asked if they could play my not-yet released record, “My Red Telephone.”

Some of my lyrics are, um, rather ribald.

…All that “in” & “out” stuff just gave me the giggles.

(I’m sure the drug cocktail had nothing whatsoever to do with it.)

BTW?

I think I saw Dr. Marx blush under his face mask. On more than one occasion.

In all, the entire test took two long hours.

Then, it was done.

And I was wheeled out of the big,scary room with all the big high-tech equipment, high ceilings and sterile gear.

So back to a recovery room I went, gimpy as ever, where the next stage of the event went on (& on & on & on…).

But that’s a story for another time.

(SPOILER ALERT:

Another patient opened the door to the Loo -which I SWEAR WAS LOCKED – while I was trying to change after the whole palaver.

It was “SEE BEE, STARKERS, EVENT #18.”

As my friend Richard would have said:

“Awkward!!!!!”

***

So. We come yet again, round the many bends and turns that my story telling takes these days…

Back to the relative beginning.

I couldn’t sleep last night.

I believe this was in direct relation to the medication “Decatron,”

a steroid I was given, by IV, before the procedure, to combat my allergy to contrast dye.

The goal was to allay any anaphylaxis (breathing problems, hives, rash …mainly, to prevent my throat from swelling & closing off my airway)

I guess it worked.

That’s a good thing.

Duh.

But now, it’s now. And I crashed hard, this morning, after 9 or 10.

Finally…

I thought I’d have plenty of time to rest and get ready for the Picnic.

But my plan fell flat on its duff.

Much like me when I awoke and tried to stand up sans help.

Ooowwwww. Wwwwww. Ch.

…. I really hurt.

It’s painful to move my left leg.

I can’t lift it on my own.

Gggrreeat.

This should make trying to dress a breeze!!

So yeah.

Here I am, still in the jammies I so gingerly put on last night.

I feel great.

Greasy hair.

Tiny sweaters on my teeth.

(Not-so fabulous, people.)

Oh.

Did I mention the Doctor said no showering for two days? Eeewwww!

(can u say “sponge bath????”)

He also said no submersion (baths, pools…hot tubs…) for TWO WEEKS!

I live in So-Cal, people.

We loves our water.

Oy.

***

So, yeah …

I was planning on being at the Moyamoya Picnic today.

I set an alarm for 11:30 am.

It runs from 3-6.

That SHOULD HAVE left me with plenty of time to get ready.

Even if it is now after 1:45.

The truth is, it’s just not gonna happen this year. Not for me.

Which is sad on so many levels…

It’s a simple kind of day, really: there’s a BBQ, and talking.

We all gather for a picture together. The staff of the Clinic are always there.

It brings home the profound truth of this disease: such a small group, yet so large. Too large.

Our communities extend so, so far beyond those souls who stand by our sides in the photo.

You, who are reading this, you are my community, too. Thank you for that.

I think of the photo I have on my wall at home from the 2010 event -which you all helped me get to, by the way ….

The front row is comprised of our MM babes: kids, sitting on the grass, smiling, compliant.

They seem to have no idea of what they’ve endured. Or will, God Forbid, endure.

This disease is different for us all in how it has manifested itself within our bodies and minds. Some are luckier than others.

I know I fall on the luckier side.

I guess I do.

I don’t know.

Today, there will be no relay races, no tug of war and no potato sac races in the park here in Palo Alto.

As a whole?

We aren’t all super inclined to push and pull while getting rope burn, and call it fun.

We’ve survived enough trials and troubles. Most of us, anyway, don’t go looking for it.

(It seems to find us too easy, as it is…)

It’s just a get-together for all of us who can make it here to Palo Alto for the event. To reach out and know we are not alone in this mysterious world.

As for me?

I can feel their energy.

From here, where I sit, with ice on my leg and a conflicted heart.

I’m okay.

I’m really Bummed.

I am not in control…

My will will only get me so far.

Sigh…

So I’ll lie here awhile.

Enjoy the company I do have.

Rest.

Breathe.

… Be grateful. I’m alive.

I’m loved.

And honestly??

I’ll try, just try, not to cry.

XOX

B