Category Archives: Cancer

Bohemian Lullabye

Yes this may or may NOT be the prologue to Shaye’s tale

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Prologue

“What are you doing?” my brow furrowed as he first turned his gaze and then his entire body away from me.

I was met with silence, that cold ring of silence that makes you uncomfortable and anxious all at the same time. I stared at the ceiling and tapped my fingers together wondering if I was going to get an answer from him.

We had been in a lull between tours and we had just another few weeks before we went on the road again. There had been talks of separate buses, because who wants to deal with a weepy Oliver when he can’t see the baby. I didn’t even know if the entire family was coming along this time. The last month long tour we did on the west coast we were ramped and it just blew.

There was a crack in my ceiling; I idly made it into various shapes as he still was silent. I knew he wasn’t dead, how morbid of a thought, because he was still breathing. And he wasn’t snoring so he wasn’t asleep. He was just waiting. Just fucking waiting. For what? I didn’t know. I had nothing left to apologize for. I tried to make amends for my past, for being distant, for not wanting to jump his bones every five seconds, hell I apologized for not making the bed the other day. But it wasn’t enough.

I took a deep breath “Baby, why did you turn away from me?”

“Because I needed to, because sometimes I don’t even think you realize that you aren’t a person anymore.”

I winced, sighed and let my head drop. “Alright, if that’s how you feel.”

I slipped out of the bed, feet hitting the cold stone of the floor, and quickly yanked on a pair of yoga pants and a sport tank and headed off to the kitchen. I almost expected him to follow me. I knew he wouldn’t, when he gets like this he never does. I half hoped that the guys were coming over to snag him for a rehearsal today. As the coffeemaker began to drip I scooped my hair into a ponytail on the top of my head. He called me pebbles when I did that, not that he had done that lately. I glanced around at the quaint stone cottage and made a face at the boxes I had yet to unpack.

I just didn’t have the strength or energy lately, honestly all I wanted during this break was to rest and spend time with Eric. But my time with him kept leading to these petty fights and I just, I just didn’t know what to do. He’s so logical and I’m so not. I’m spontaneous and he’s organized. I love clutter and he, well he can’t leave dishes in the sink overnight.

Adding some coffee to my sugar and cream I plopped down in my oversized armchair and flipped the lid open to the box closest to me. Pulling a manila envelope out of the top, I frowned because I didn’t remember when or how that got there. I opened it slowly and placing my coffee on the table next to me, reached in tentatively. It was full of pictures.

I pulled them out one by one, studying each and every detail. Some were from even before we hit it big. Way before. Some were from high school, HIGH SCHOOL. When my hair we all kinds of curious colors, and there was smiles on all of our faces. Each of the pictures as they fell into my lap brought back memories I hadn’t had in so long. Some bad and some good but each had lyrics and poems attached to them. I knew what I had to do to get out of this funk. I grabbed my pone and loaded up a bunch of songs and stood up letting the pictures flutter to the floor.

I hastily wrote a note and left it on the table:

Eric,

Went for a run to clear my head. Technology free day, soon as I come home. Yes I have it on me, and my knife and my pepper spray.

Love you,

Shaye

 

Placing my ear buds in, I stretched my legs out and headed out the door of my small stone fortress, and out into the woods. Taking in a deep breath of that green fresh mountain air I began to slowly jog, losing myself in my memories.

© S.R. Gray 2016

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The Answer You Didn’t Want

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You sat there in the chair shifting. The cushion was not comfortable but it wasn’t the worst you’d ever deal with. You waited as the papers shuffled on the desk and he turned to face you. Quietly the little boy with the big brown eyes was playing with the blocks. The noises made the silence worse. Shuffle shuffle, click click, unidentified sounds from that beautiful boy. Finally he turned, you dug your fingers into your legs to keep from shaking. You already knew the answer but you needed to hear it from someone who could tell you that you weren’t crazy. He had a PhD, he knew crazy.  Autism, Aspergers to be exact. Along with Sensory Processing Disorder and anxiety. You lips pressed together so you don’t cry. You knew what they were going to say, but hearing it was a slap in the face. But 4 years later you’re still ok.

Tap, tap, tap….fancy pen on a fancy leather shoe. Your under a microscope. He won’t tell you what’s wrong. Claims he doesn’t know. But you already heard the answer, because you’ve been living with it for years. But you needed to hear him say it. Say that you were bipolar and borderline. And he refused. So you broke his mug. And when you were finally ready to hear the answer, it was still a stinging mark across your face, because it wasn’t supposed to be right. 3 years later, you’re still alive.

Over and over this happens. It feels good and bad at the same time. Vindicated but what the fuck are you supposed to do now?

Now…When you need answers. When the bloods come back highly abnormal, you get nervous. And it’s not nervous that they will find something but more nervous that they wont. You are tired, swollen and drained. So they had scheduled another test. And you pray something pops up. Because in all your years …Nothing has. It’s hard to fight an invisible disease when you can’t find it. Sick and tired of being sick and tired. So you hope they find something. So that you won’t  have to suffer without reasons…

But you realize in this moment that this may be the one answer that you don’t want to have already answered.

Food for thought
Shaye xoxo

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Another Fallen Star

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What do you say when someone you has never met, but has touched your life so profoundly. Do you weep freely or hide your tears from the world. When we lose those that shaped our lives through their words and talent; We sit in stunned silence as if a lover has passed. When the tears finally come and your body convulsed with solve, you curse the universe for trying to shatter dreams.

“What are you going to do next? Hit me with that fiiish”

Thank you for bring my awakening, helping me go after my dreams and just being one helluvah guy.

RIP Alan Rickman

Your star will never stop shining.

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Maybe Dumbledore Isn’t Always Right – Rebecca Ethington

One of my favorite authors and closest friends posted this on Facebook a few days ago. I found it so profound, and you don’t usually find stuff like that on FB anymore. It summed up so many things, what ifs and lonliness, bullying, and just not knowing when to reach out and help someone or when to ask for help for yourself.

Never be afraid to reach out and help those in need, never be quick to judge because you never know what that woman behind that mask or the man behind the curtain are really like. Sometimes it isn’t east to click your heels together three times, sometimes their is no faerie godmothers. But there is always you, and that is good enough for me.

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“There is a scene in the final Harry Potter where Harry and Dumbledore meet at a place between life and death, and in that space they see a piece of Voldemort’s soul – this quivering, whimpering, ugly child, shoved underneath a bench.
And Harry, tries to go to it, convinced it needs help. And Dumbledore tells him not too.
I’ve always hated Dumbledore for that. Yes, Voldemort is evil, did he probably deserve what’s coming to him – yes. And I am in no way comparing myself to that quivering whimpering child, hidden away in pain.
But we have all been there.
We have all been so full of loss and heartbreak, and agonizing defeat, and sadness, and rejection. That we have all been there.
We have been that forgotten child in the corner, a deep part of us just shaking and crying and desperately hoping that someone would just come over and pull us out of the dark and hold us while we cry and comfort us until it all goes away.
I know I have.
And chances are, when you are there, you don’t know how to ask, or maybe you don’t have anyone to turn to anymore. You are alone, and you can hear people talking on a bench and your crying out for help, but they don’t come to find you.
So take this with a grain of salt. But you know those “whiny” posts everyone complains about on Facebook? Yes, some of them are just negative people. But what if some of them… just maybe… where people so lost and alone and scared and so desperate for help that they are asking for help the only way they know how. That maybe they just need that hug, or that phone call with a real voice.
I can’t believe I’m going to say this… but maybe sometimes we shouldn’t listen to Dumbledore. Because maybe sometimes they need our help, our compassion, our empathy and our love. Don’t be afraid to reach out – because people are people – but they are also human. And in this crazy world, we can’t do it all on our own.” – Rebecca Ethington

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We Have Apples

So there is this wonderful mental illness blog that I follow by Rachel Griffin called We Have Apples. A little bit ago she had put up a post asking for pictures, both uplifting and at our times of trouble to put in a music video for a project she is doing. Let me give it to yo in her own words (it pasting it from her site)

“As a lot of you know, I’m a singer/songwriter in New York City with a fabulous life…. and a mental illness! (the two can go together! And errr.. it wasn’t always that way! LOL) I am so passionate about mental health awareness, ending the stigma, and connecting with other warriors like you! I am also writing a musical about these topics.More about the mental health musical I’m writing, We Have Apples, can be found on the website. You can also hear songs there. (But the song for this video is not released, yet- You’ll be the first to hear it, though!) If you want, you can sign up for the show’s mailing list to be kept posted on the development!:)

I was just selected as a Dramatists Guild Fellow, which means this year I will be working on developing We Have Apples with Broadway professionals!

More about my career as a singer/songwriter at: Rachel Griffin Website. This info I’m giving is not because I want to brag, but I want to tell you a little about my career so you know this song and video we are going to make will be high quality and could do very well! 🙂 I’ve won two National songwriting contests, recently wrote a song for an internal Macy’s campaign, and I have a publishing deal for a few of my pop songs.”

Well I participated in this as mental health is a very important subject to me….Obviously. I am keeping my fingers crossed that I will get to work it Rachel in the future. But here it is…..My debut in a music video….Pass and share it is so important!!!!

My nightlight is too dark

Says Pixie as she tiptoes into my room at 515 in the morning. I was already up. Since 430 my body clock seems to arise no matter how many sleep meds I’m on.

We grab our pillows and head to the living room, turn on Masterchef and I hope she falls back asleep. Right now she’s telling me that when I get skinny I can go in TV and cook like them.

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When I get skinny….as her and I share a tiny bag of Cheez-Itz. Funnily enough that’s what I was going to write about (but I wasn’t planning on sharing my snack)

I shouldn’t be eating these, granted after my first nutrition appointment I knew that the soda, the snacks, the take out. But it was easier because of what little energy I had. Because of how sick I have been. Because of the move. There was always an excuse.

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Trip making my kids crazy. I ate. The loss of the baby. I ate. The kids not listening to Charming. I ate. I binge when noone saw. At 430 am.i gained 21 pounds I have to lose beside surgery. But the constant barrage of sweets, sodas,ciggies. ..coming into my .bubble, the harder it is to say no.

I see my nutritionist today and she won’t be happy  with me. I had to stay at my weight and I gained. I’m assuming through mybliauids. I feel so down on myself.

The fibro diagnosis sucks. But the eating disorder ….. I thought I squashed that I long time ago

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Superhuman Spoonie Squad

Recently I made a group on Face book called *see title of post* I was tired of joining groups with over 1000 plus members and trying to find my niche.

Superhuman Spoonie Squad

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This was my callout for my members

I have started a group for all of my spoonies. Because sometimes it’s nice to have a place to go, when you can’t have a friend to hold your hand, and there isn’t over 2 billion strangers to try and converse.

So raise your hand if you need a voice, a hand or just to lurk and hear what spoonies like you have to say.

Safe space. Is what I intend. Rant, vent, laugh, cry…..

Comment, pm, tx, email….get in touch

Superhuman Spoonie Squad

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This was what I had to say about me.

So let’s see….
Graves disease
Immunothrombocyticpurpua
IgA Deficiency
Chronic fatigue syndrome
Fibromyalgia
Uticaria focal caused by who the fuck knows anymore
Bipolar II
Borderline personality disorder w/narcissistic tendencies
Anxiety disorder
Binge Eating Disorder
PTSD from all forms of abuse, violence and my miscarriages
Oh and I randomly black out for reasons they still don’t know

At least I don’t have cancer?

Well yall know me. I’m a sassy, snarky survivor that tries (sometimes too hard) and pushes myself (definitely to hard). So as I get my computer fixed I can continue writing the books that I have started. I am going back to school in the fall to get my bachelor in therapy for teens with mental and personality problems.
My dream is to open a coffeeshop, with mismatch in cushions that is a safe space. A Place Where IF YOU NEED help YOU HAVE someone to talk to. It’ll have books and board games and at ni h t there will be optional group meetings. THE Walls Wil BE DECORATED By PHOTOGRAPHS AND Art From Local artists. My photography studio will be in the back.

They are still fucking with my meds so if I say non sensible things In here I’m sorry. My fibro flares seem to be worse because of the rest of my diseases.

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I know some of my readers and fellow bloggers use this world as a safe space to vent. I want you to know that there are other places as well. I have my degree in therapy as does a few in my group, but that is not what the group is for.

This is what my group is all about.
Friendship, handholding, venting,laughing, crying and being the incredible human beings we are….even if we don’t see it some times.

If you want to you are invited to join us, to lurk, to talk, to listen and to make or 5.

Superhuman Spoonie Squad

I belive in you.

Sparkly love

Shaye

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Diagnosis

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You’ve been here before
You know what’s to come
You know the symptoms
The causes
The signs

You’ve spent months doing research
You’ve  talk to the doctors
You’ve talked to the therapists
Hours on Google
Sites they tell you not to read

The time has come
You sit in the waiting room
Those chairs eat to make you feel at home
But you feel it
The anxiety creeping up
You already know what’s to come
Why are you panicking

The needles go into your arm easily
That one good blood drawing vein
You managed not to pee all over your hands
When they give you a much to small cup
They check your vitals
Blood pressure cuffs that bruise
O2 monitors shows you’re perfect
But you’re not

This pain has been building for a long time now
The rashes
The blackouts
The sleepless nights
The snarky comments
The feelings of everything snowballing
The highs
The lows

Sony appointments
So many tests
Ekgs
Eegs
Mr is cats scans
Stress tests
Sleep studies
Trial pills

They call you into their office
You are 9
Your mom is there
You have Graves disease
We had to take out your thyroid
But at least it’s not cancer

You are confused, there are tears
But it’s ok, because Mom is ok
They do a Home Improvement episode
Randy has the same thing
You kind of understand
Then surgery

The weight starts to put on
You are a nervous teen
Uncomfortable in her own body
In her own mind
Not popular, but you best friend is
Popular by association
You are tired of being around all the bad stuff
You just want to sleep

You fill a bottle of pills
100 Benadryl 100 Tylenol
You sit next to your group at breakfast
In the crowded lunchroom
Make conversation
Take each pill one by one
No one notices
You wait for the bell
You are scared
You are 13

You take hold of your best friend’s best friends arm
You tell her to take you to the guidance counselor
You may die
Counselor calls your mom and 911
Mom yell at you profusely
Ambulance arrives
You are unconscious

Next thing you know is mom doting on you
Doctors asking for a psych evaluation
Mother denying it
They ask me about pictures
They never ask me why
The release me home

Everytime mom got upset
She’d throw a bottle if pills at me
Asked me if I wanted them
High school was chaos
I just wanted to fit in

Never didn’t have a boy friend
Did things for money
Experimented with girls
Then I got real sick
Mono, flu, ruptured appendix,flu,mono

The night my Father caught me smoking
Was the night get met me before class
At night school
Shiny white construction truck
Something was wrong

Get in
They think you have cancer
My heart stooped
Routine blood draw the day before
Came up with possible cancer
Had to go to the hospital now
Mom was hysterical
And waiting

We didn’t talk
I smoked his cigarettes
He didn’t say a word
Blood tests
Had to come back in the morning for a bone marrow
Might be luekimia

Didn’t sleep
Bone marrow test sucked
Hematology/Oncology Peds ward sucked
I was pulled out of my senior year
Soent days there
Without Luekimia
With Immunothrombocyticpurpua

I was allergic to the treatments
They had to give me longer ones
With other thing
To keep me from dying
But at least it wasn’t cancer
I missed senior year
I was 17

They told me I’d never have babies
They told me lots of things
Because I would always have chronic illnesses
But I met Drew Barrymore
I week later I met Trip
Two weeks after that I was pregnant

High risk
Moved to VA to be near him
Shotgun wedding
Known each other 3 months
Everyone wanted the baby gone but me
He was my baby.
Couldn’t drive
Couldn’t do much of anything
Felt insane

Hospital time
I’m allergic to latex (I didn’t know)
My son is perfect
Trips been sleeping around
6 weeks later I start to bruise
Hematology said if I  dont come now
I could die.
If it weren’t for my new born I would have gone.

The abuse started then, emotional, mental
We got physical a few times
He lost his job, I got one
We got pregnant
I lost Hope
It was devestating
We called our marriage quits

Then the barrage of insults
I had gotten too fat, lazy, bad wife
Meanwhile he was sleeping with
My best friend
One last hurrah on my 25th birthday
Pixie was implanted

He saw her sonogram 3 months later and left me at the doctors office
Took little man with him
It was our 2 year anniversary

That pregnancy was hard
Living in a small room 
In mom’s house
Slept in a twin bed with my son
Fetal cardiologist everyweek
2 vessel cord
No husband
Drove 45 each way to work
In another state
Started having blackouts

Into the world she came
Out of mom’s we went
Well first came meds because I had such bad post part depression
I could let any one touch her

Then my little man got diagnosed
With sensory peception disorder
I knew something was wrong
But give it a name and it’s real
And scary

Fast forward
Hand shaking
my four year old
still doesn’t articulate much
I know the answer but I’m scared someone else may say it
Then it’s real
Autism
Aspergers
Anxiety disorder

Slap
Slap
Slap

I knew I knew all along but
To hear it describe
To know my angel baby is going to have
Some form if difficulties
That’s hard

Ot. Pt, TSS, BSC, Speech therapy
And I work
Because Kie is jobless
And well bills need paying
Pixie needs day care

The the break happens, my break
Thrown against a wall
Accusations flying
Abuse thrown at me
I hoped she choke me out of kill me
It hurt so much

I broke
Doc sent me to out patient
A mental hospital
WITH Crazy People
But it was that or being 302’d
They didn’t diagnose at first

They watched
interviewed
Tapped their FUCKING PENS
Used NOS as an excuse
Loaded me with so many meds
I couldn’t remember my name

I knew what was wrong
But I wasn’t prepared
Bipolar II ok gotcha on that
Anxiety disorder ok feeling ya
Borderline personality disorder
WITH NARCISSISTIC TENDENCIES
Scuse me? What the WHAT?

SLAP
SLAP
SLAP

Speechless
More meds please
At least it wasn’t cancer?

I read books
Tried to understand
And IT made sense
I could live with it
But refused to take all the meds
That was a struggle

But a blackout
Leading to a major car accident
Made them agree with me.

Fast forward…
Diagnosis – Binge Eating disorder
Diagnosis – CFS
Diagnosis – IgA Deficiency
Diagnosis – hives due to allergy from progesterone
Diagnosis – fetal heart stopped beating, need to induce labor and force miscarriage
Diagnosis – Fibromyalgia

No matter how mich you know, to have a doctor tell you anything, it hurts, a lot. And I know I’ll get through it. But I’m scared. Scared of more things wrong. Everything hurts. Pain in touch, to sunlight, no sleep,  no real awake. Of this is a dream I want to wake up. Because it’s a nightmare.

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What am I fighting for?

Well whilst I can’t answer this directly on here just yet as it was a question posted for gishwhes.  I will say, things have not been peachy and there are days I feel like I am fighting for my life.

Sick and tired…..

…Of being sick and tired

Since I was 9 and the blood tests began. The poking and prodding. Since I learned the word Endocrinology.

Since I had my first cancer scare and the blood tests were done every week. I didn’t even know what Graves disease or my thyroid was or did till I was pregnant at 22.

Then there were the hives, the suicide attempts, the in and out of the hospitals. Staph infection, IBS, a really scary Gyny appointment that my mom never knew about….just part of my PTSD.

Again a cancer scare, a huge needle, a scar on my hip. Hematology and Oncology were words of my senior year of HS. Home school that year. I never got a senior year.

More blood work. Bruising, bleeding, allergies to the treatments. I didn’t know what ITP was until I was pregnant.

I swell, I hive, I bleed. My joints hurt, there are rashes and I can’t walk. I can’t sleep and when I do I still wake up sleepy. No energy and it hurts to be hugged.

So many meds and tests and bloodwork. So many ER visits and allergys. Shots and Xrays. 2 miscarriages. Weight loss and gain. Surgeries, anesthesia, doctors.

No answers. Never any answers. Just moved along to yet another doc. I offer to let them keep me. To let them keep me for tests.

Words like Lupus, fibro, MRSA. And they want me to be a grown up, nit to shudder at IV’s. To act dumb, not know what glucose in your pee means.

I’m scared, I’m only 31. I want to know what’s wrong. We have advanced so much since I was 9. I know you have the technology. Just figure it out.

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I stop up nights crying, wondering what I did wrong. What I did to deserve all this. My children keep me strong. My Charming stands tall by my side.

But I never wanted it to be about me. And somehow it always is. Because Noone explains a thing. There is no explination. According to them I am an anomaly. A case study.

So fucking study me. I’m tired of being tired. I’m tired of being sick. I’m tired of scared that my kids will follow in my footsteps are that I will lose another angel to heaven.

I don’t need your narcitocs, I don’t need your crazy pills. I just need to know what’s wrong and how we can fix it.

Because honestly doc…I hurt…all over

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