“NEUROFEEDBACK, BIOFEEDBACK, FEEDBACK FEEDBACK” (Just Breathe)

SUMMARY:
Rebecca welcomes in the New Year with a pang; while outlining the PRO’s and CON’s of her present life; she opens up to her trusted, beloved community about the emotional darkness in which she’s been mired and how she is pushing to find her way back to the lightness of being which she associates with her “former life,” ie pre-diagnosis, pre-stroke.
In what has become almost a trademark comi-neurotic, meandering, pithy narrative, Rebecca wanders off the beaten path as she tells all, specifically about her experiences with “brain training,” and the challenges she faces as she confronts her innermost fears in a quest for acceptance of the devastating consequences of “Life In Moyaville.” 
***
“NEUROFEEDBACK, BIOFEEDBACK, FEEDBACK FEEDBACK” (Just Breathe)

21 JANUARY 2014

2014.
Twenty. Fourteen.
BC.
—- eyes widen:
Jesus Christ when did THAT HAPPEN??!
(Sorry – for those who might be offended by my language…)

So: 2014??!!
Life. Flies. By. 
Okay – breathing …
(Or as my dear friend Jussy would say:
Woo-Sah
…. That, or
Be a duck.”
(You’re supposed to figure that one out for yourself…)
I am having a weird time- life feels like it’s waiting to start. That’s a bad place to be —I think it shows lack of acceptance….
Acceptance of my illness and where I am at today is something that I am actively working on in therapy.
(It’s mostly Neuro feedback and biofeedback but we do do some talk therapy and it’s helping.)
I mean ….
Mostly it reminds me of all the things I’m supposed to be doing and I’m not, but other than that…. 
No pressure – really!!
Lol
No, it is helping. I mean yes, it does remind me of those things, which is stressful, but they do need to get done- I am not putting my health first the way I need to; my doctor is right about that! So I have made the decision to keep pushing.
But damn…. 
It’s hard to keep up fighting the good fight — I’m just tired.
So tired.
All the years of living with Moyamoya Disease and …not one….. but TWO kinds of chronic pain ~ has drained the will from me. My bones ache. My soul hurts. I am weary.
The disease – the pain – these things combined with being a professional patient – is crushing my will to push forward.
On anything.
Anything!!!
I mean, it’s a full-time job. Truly. (And I am co parenting two beautiful t/weens. So my plate is more than full….).
Imagine it: the nearly-constant stream of to do’s: the dialogue with insurance companies and hospitals, pharmacies, and the like ~ getting prior approvals for everything –
added to the blood draws, the myriad of brain and body scans, the endless paperwork, making the time for expensive trips back and forth for expensive treatments, the surgeries, the appointments, booking the appointments, rebooking the appointments when it happens that I have a TIA – getting my medicines, PAYING for my medicines, applying for grants to help pay for my medicines (lost out on those 2 years running – the grants go so fast now!!!  I’m too slow to act: meh),
the cost of supplements and misc necessary things:  Pedialyte (for dehydration); o2 masks (they get funky fast); ice packs (life savers!!!!); True Raspberry Lemonade and True lemon (so I don’t choke on plain water – a side effect of strokes in my case) ….
–juggling money on credit cards (ouch) to cover costs of living – always an anxiety provoking experience — like, I need a new mop. And a broom. Food. (Really).
…And two chairs for my little doll-house dining room table…. Because they broke.
-Curtain rods — not the cheap hollow brass ones (I have extra extra wide windows– they neither hold the weight of any of my sets of curtains nor do they stay TOGETHER – they aren’t long enough–)…. This isn’t a luxury deal- it’s for safety and comfort —  so I can get some bloody privacy!!!
See, my living room faces a very busy street — there’s definitely room for another “Nekkid” blog in the works, seeing as there’s a nice school crossing guard who works across the street – twice a day, five days a week. (Did I mention my bedroom also faces the busy street??!! AWKWARD!!!!)
So  — jeez, man! The noise alone is making me batty.
And whenever I turn on my sound machine (ocean waves, rain, thunderstorm, sounds of a babbling brook or a stream….) I end up feeling like I have to pee.
Lol
I’m sort of  ashamed admitting this – but I’m not gonna lie!! Hello. (The “needing” stuff – not having to pee.)
……..
Yeah.
K then.
***
BUSY BUSY BUSY BEE
I think the  admin stuff is where I am just drowning-  O.M.G. It’s just insane. Speaking of insane — check this out: I am trying to get a handle on some totally alarming botched medical records from 2008 — this documentation needs to be amended STAT- all because an overworked, understaffed ER nurae was juggling too many charts and confused me with, are you ready??
…. a 48 year old divorced smoker/ former iv heroin user / who has been admitted for suicide attempts on 13 different occasions …. This –  BTW —  makes a GREAT impression when your neurosurgeon is prepping you for surgery and scans back thru your history and does a triple take – and you have to show your ID in TRIPLICATE to prove that was NOT YOU — ***
(this actually happened / the details are accurate and have not been changed to protect anyone’s identity) ….
Not a day goes by without my attention being pulled in a gazillion directions – and I can’t get out from under it all – the unending requirements for living successfully – and by that I don’t mean my career, spiritual goals, or the like. I mean, just surviving: still.  Sometimes I am so ashamed at what my life has become. I feel like I’m living in a bad dream sometimes.
But it’s real, it’s all very real.
And I didn’t CHOOSE it. So frak the guilt. That’s just fuel for a fire I can’t touch.
I know it could be worse & I know – I’m lucky to be alive. But it’s fair for me to want more, to live better, to be happy. Ridiculously happy.

So here’s the deal:

It’s time to make a decision – live with this, let it progress & eat me alive, or rally the dwindling energies I do have, delegate, ask for help to get the big things DONE & just find my inner Betty — my alter ego who has so much power, she practically vibrates — and let her out. Hold onto her for dear life and believe.
(Gritting my teeth now!!!)
~~~~Huge SMILE FOR THE CAMERAS!!!!

Just do it.

Just do it.
One day at a time.
One day at a time.
(Platitudes drive me batty.)
But better that than being bratty.
I excel at both.
For reals.

****

PRE-HAB

So- yeah — I am getting some brain rehab —finally. My doc says it is not enough –but it’s a start.
Dr. Y – I will call her that – my neuropsychologist –  told me yesterday that to get the best benefit from my sessions, I should be seeing her five days a week for two hours a day.
– I see her twice a week for 45 minutes right now. I was seeing her for double sessions but my insurance put the kibosh on that.
Nice huh!???
I have researched this Doctor- a lot. And the results she gets with patients are pretty outrageous.
I WANT OUTRAGEOUS!! Good outrageous.

She says that if we do this, for between 3-6 months, I willl be READY to actually handle the intensity of the Rehab without Walls  program thereafter.

Considering where I’m at??
How low I feel so much of the time of late? (Yes, it’s winter. The days are short and dark. I know this, man. Moving on.)
This is music to my ears – this is HOPE.
This is the first person — an actual medical PROFESSIONAL—   in a long — long — looooonnng time — to tell me I can get better.
I will get better – but not without lots of work. Hard work. 
I have absolutely ***no idea*** how to pay for this, and right now I don’t want to think about it. I just want to think about the fact that **I believe** what she said…. I believe I will get better – for real better –Functioning – living a full life – having a social life and a career – maybe getting my Phd – once I can get out of my pjs – lol – once I can make my bed in under 25 minutes – once I feel right again …. Once I have energy to spare – I can do all the stuff that makes us feel connected – to ourselves and each other -maybe not the way I used to- okay – definitely not the old “Rebecca” way —  but at least  I will be able to make those choices for myself. 
Now that makes me wanna smile for the cameras. 
Word. 
***
THE HAPPY: 
So: uh- Positive stuff –
Update-y type stuff…
I owe you this much ….
… Since I’ve been off the radar for sooooooo-ooooooooooo-oooooooooooooooooooooooooooooo long – a sunken ship slowly being raised from the great deep depths of the deepest ocean floor….
Um-okay.
1) I have lost 35 pounds in about 10 months  —  it’s coming off slowly — that’s due to a few different things – medicine I take for Moyamoya Disease, forgetting to eat –frequently (which makes the body store fat and slows the metabolism down — before this, mine was always a hummingbird metabolism  – crazy fast -) and most of all,  because of the lack of blood flow to my darn hypothalamus – but it is working!!! Boo-ya!
2.) I am going to a yoga class today: it’s a mixed  level  donation class – I’m doing things like standing splits. Mostly.
(Having the wall next to me helps.)
3.) I JOGGED last night in the park across the street. with Mackenzie. For about 7 minutes.
And I didn’t fall.
Whoot!!
Kenz did laps around me. Twice. She’s 12.
Yeah. Her school’s gym program is simple: a one trick pony — they have the kids running track 5 days a week.
Whatever happened to square dancing??!!
She’s REALLY missing out.
Sheesh.
***
4.) I have an amazing mentor, Wanda. She guides me well and when I TAKE her direction?? I am always happy with the outcome. She turned me on to something called HIGHER BRAIN LIVING –
More on that later – love her!!!
(I am very excited about both opportunities: Wanda &  Higher brain living.)
5.) I’m working on a  song with Shamar Daugherty of the Track Starz, a multi-platinum selling production team out of St. Louis – the successful duo has “broken” acts like Chingy, Nelly, LUDACRIS- hi. Holla!!!!!!
(I am doing the tiniest happy dance ever. Don’t wanna fall before yoga!
But OMFG!!!!!)
Truth? It is SO HARD starting up again O.M.G. – I have to finish this song for Sham, ASAP—-  it may be a huge deal for me. It IS a huge deal! It’s a BEGINNING!! After so much waiting and writing and ….not finding it in me to start recording anything more than “scratch vocals.”
Pray he and his team like what I wrote!
(Now I need to rent studio time – this fills me with utter  joy…and sheer terror!!!)
God it makes me miss my old partner Danny M!
Weird – I actually tried getting thru to J.S.  about ….6 weeks ago?? He’s an old-school friend who hit it big 2 years ago as a writer-producer – I’m happy for him. We came up together!
I was having some writer’s block & thought it’d be fun to hang out and throw ideas around – but he seems to have written me off- he never replies to any email or texts – which is sooooo weird BECAUSE  ***HE***  CONTACTED **ME** right before he moved here and was all “I wanna see you, Rebecca!!! Let’s get together !!!”  
So whatever, right?!
I don’t know – I wish I could rely more on the people who either used to be real friends or were business associates – I am learning that here in LA, anyway, most people generally don’t seem to give a frak unless you’re doing something for them ….. or right in their face.
I guess…
–Might help if I gave them a chance, though, I haven’t even called the three or four people that I actually worked very closely with. I’m definitely …..scared.

Of rejection I think – I don’t know ….  I’m acting like a brat huh???  I do that. Well. Exceptionally well. Meh.

I don’t know – people r weird. They don’t know how to respond to me having this illness – it’s like either I’m FINE or I’m dying.
Neither of which is true.
I can’t wait to get better and — please GOD– to make my comeback– I will. I will. I will.
Positive thoughts yield positive results.
Along with action. (I’m not gonna THINK my way to a hit record, that much I know…)
But I’m off to yoga now.
Not to record. But I gotta lay my vocals down!!! This week.
Seriously…
Okay.
Woo-Sah.
For today? Yoga.
For everyday?
One breath at a time.
One step.
One success.
And acceptance.
Sigh…..
Time WILL tell- and I will keep y’all posted.
(Fingers Crossed.)
With Love,
xox
Bee

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