‘Language is the blood of the soul into which thoughts run and out of which they grow.’ Olivier Wendell Holmes

Feeling speechless

I didn’t think this year could possibly get worse

The universe took that as a challenge

It got so much worse

I’m home from the hospital now

I did things this week that I didn’t think I would ever be able to do

I should feel proud

Instead

I feel resentful and saddened

That I had to do them at all

After two days of immunoglobulin infusion

My platelets are still low at 28

From what I remember, this might mean that I have Immune thrombocytopenic purpura (ITP)

Refresher:

ITP is a bleeding disorder where the immune system mistakenly destroys platelets

Platelets allow us to not bleed excessively

It seems like a really big fuck you to me

I hate blood and needles and anything to do with bleeding

And the universe said

Well, here ya go

I won’t know for sure until next week

But of course I’m thinking the worst case scenarios

I’m convinced I’m dying

I’ve never had that fear before

The universe laughed

And said ‘now you do’

I’m scared

I’m sad

And I keep thinking I just can’t take any more

But I’m scared

That the universe

Will take that too

As another challenge

And I’m just not up for it

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‘And here you are living despite it all’ Rupi Kaur

There is something infinitely terrifying about needing any type of replacement for your blood

When the doctors first told me my choices were steroids or a hemoglobin infusion, I felt panicked

Immediately stories of tainted blood flooded my brain

I became very aware of my own mortality

Catastrophic possibilities of bleeding in my brain

Or bleeding to death

Were all I could think of

I also thought of everything I would be leaving behind

Joey

My parents

My sister

My nieces and nephews

I thought of all the things I might never get to see

Maybe I’ll miss Lisa getting hitched

Or my nieces having boyfriends

I’ll just miss out

On life

I thought about Joey

And how it might be easier for him without me

But then I thought of him moving on with someone new

Someone not sick

It was soul crushing

He’s mine

I thought

We’re supposed to grow old together

To retire in a hot place

And I broke down

I ugly cried

Hard

I’m not ready

It’s not my time yet

Then I thought of 6 months ago

About how many times I said I would rather be dead than dealing with my panic disorder

Maybe I jinxed it

Maybe I brought it on myself

Maybe I put a challenge out to the universe

But see

The thing is

You can’t be held responsible for things you say under duress

I wasn’t myself

I didn’t mean it

I was scared

So many factors

But I did wish it

So many fucking times

And I did mean it

It was so painful

I remember thinking death has to be better than this

Anything that makes it stop

You know?

That was 6 months ago

Today

I’m an artist who has shows planned

Today

I am a wife who wants to live out her future with her beloved

Today I am a daughter and daughter in law who wants to spend time with her family

Today I am a sister and sister in law who wants to share more laughs together

Today I am an aunt who can’t wait to see her nieces and nephews grow up and become who they were meant to be

Today

I want to live

Through the pain

Through the sadness

Through the blood tests

Through the infections and fevers

Today

I am going to fight

Because I want to

The Ugly Side Of Recovery

I’m one year and 3 months post round 2 of Lemtrada (the immunosuppressive treatment I underwent for MS).

This was probably the biggest and scariest thing I’ve done in my life

There was caution and risk involved

But I did it anyway

Because my desire to be healthy outweighed my fear

That doesn’t happen often with me

Countless times, I’ve allowed my fear to be in control

To sit in the drivers seat

To call the shots

For whatever reason

That time

I just didn’t

One of the possible side effects of Lemtrada treatment is:

‘Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple’

I think it’s something like 2% of Lemtrada patients can end up with it

Well I recently went away and while on vacation I noticed huge unexplained bruises.

Then came bloody stool

Some red spots

And a whole lot of anxiety and fatigue

Needless to say

My trip was a bit of a bust

Upon return I reached out to my Lemtrada nurse to explain what I was experiencing and she told me to get my bloodwork done

I did

And my platelets were 53

Normal platelet count is between 150-200

I really had to restrain myself from googling the fuck out of this

I sent my nurse a copy of the lab work

And bright and early this morning she called me

Seeing her name on my phone

I knew it wasn’t going to be a friendly call

She urged me to go to emerge at St. Mike’s ASAP

She was amazing at calming my already sensitized nerves down

So I got my people ready and we went

At emerge and after having to explain Lemtrada repeatedly, I had more bloodwork done and a rectal exam (that was fun)

After lots of waiting

Worst case scenarios playing in my head

And my constant companion of anxiety

My results were back

Platelets up to 87!

Not in the clear but an obvious improvement

With cautions about new bruising or headaches

To return to the emerge immediately

A little bit of good old fashioned fear: you could experience bleeding in your brain

Another blood test on the horizon

And an appointment with a hematologist

I’m headed home

Of course I’m scared

Because yet again

There is uncertainty

For example, what caused this all of a sudden?

What if it comes back?

What if I fall or cut myself?

What if I die?

Uncertainty and anxiety are like yin yang

They feed off each other

And it’s so fucking easy to slip into my old patterns

Fear, panic, sadness, wallowing

Then what?

It doesn’t change my potential outcome

But it does make this whole process that much harder

And why on earth would I ever want to make things harder for myself?

I refuse to allow this to make me a victim

Nope

Today I will do something that I don’t often do

Something my sister said to me

I will deal with this with a grace I don’t often possess

With strength and determination that I’ve not often felt

Gratitude that I often neglect

And I’ll just keep going

Because anything less isn’t an option

Not today anyway

‘In the blink of an eye, everything can change.’

Sometimes I’m scared to blink

Im afraid that this current edition of my life

Will suddenly morph back into the one I was living 4 months ago

Although living seems like far too grand of a word for what I was doing

Existing maybe

Barely

So now even going to sleep is a gamble

Which version of myself will I be when I wake up?

It seems like far too big of a risk to take

And I’m not that much of a risk-taker

Not with my life

I don’t want to lose this stranglehold I have on my life right now

I’ve worked too hard

Struggled and fought too hard

To lose it all

In the blink of an eye

‘Armed With Skill And It’s Frustration. And Grace, Too…’ The Hip

It might look a lot like weakness to the outside world

Maybe even to inner circles

But there is nothing weak about the daily struggles that it takes to survive through a mental illness

I repeat

There is nothing weak about it

There is nothing weak about me

Yeah I get it

Maybe you see someone who is fragile

Someone who is broken

Maybe you see someone who is crazy

Fuck

I don’t know who or what you see

I know what I see

Every single time I pass my reflection in a mirror or window

I see a fighter

Someone who has spent their entire life fighting

Fighting to live

Fighting to find happiness

Fighting to find peace

What an oxymoron

I read somewhere once that,

Fighting for peace,

Is like fucking for virginity

I get it

But its the truth

I fight tooth and nail

I dig in my heels

I scratch

I claw

Anything

To make my way back from the war that is constantly waging in my own brain

If you’ve never been there

You’re blessed

Truly lucky

That you’ll never understand how totally terrifying it is to not feel safe with just you and your own thoughts

You’re lucky that you don’t have to wonder when it will all come crashing down around you

Again…

I’ll never be grateful for having mental illness

I won’t lie and pander about how its taught me so much about myself

About the world

Trust me

There are things I’d never wanted to learn

Like what Paxil withdrawal can do to your once functioning brain

Like how food can cease being appealing to a die-hard ‘foodie’l

Like what the inside of a single room at a crisis centre looks like

I could have happily gone through two lifetimes not caring to know any of those things

It hasn’t made me wiser

Or kinder

So I can’t find it in myself to express gratitude towards something that has stolen so much from my life

From my family

From my father

From me

What I can unequivocally state

Without any doubt in my mind

Is that anyone surviving with a mental illness

Must want to be alive a whole hell of a lot

To be persist

To continue

To just keep going

To anyone who doubts it

You have no fucking clue

The strength and determination it takes to do it all over again

Tomorrow

‘Putting up with means withdrawing from panic in panic; adding panic to panic, hoping that panic will go away quickly and not come back; it means avoiding people and places that bring on panic so that one’s horizon becomes narrower and narrower unit it is finally bounded by the front gate…It means continued illness.’ Dr. Claire Weekes

I’m feeling frustrated today

I consider myself a pretty smart person

Also someone who is more self aware than the average person

I’m well versed in all things anxiety and panic related

I feel like I graduated with a masters in this shit

I can recite all the therapy talk

More so

I actually believe in what I’m saying

I am perfectly aware that nothing worse than the panic attack itself, will happen to me

And yet

Every morning I wake up, heart pounding, mind racing

In fear of the next panic attack

Those same panic attacks I’ve been having for over two decades

Those same panic attacks in which what I’m most afraid of, does not come true

In fact

It never comes true

So what the fuck is the problem?

I think my own fear is greater than my knowledge

So I give in

Day after day

Even with the meds I obediently take

I watch life pass me by

Feeling less and less like it’s even my life that I’m missing out on

That’s how far out of reach things like dinner out or going to my sisters house seem

I can’t seem to stop from being hard on myself

I feel like yelling at myself:

AFTER ALL OF THIS, WHAT THE FUCK DO YOU STILL NOT GET?!

HOW MUCH MORE TIME WILL YOU WASTE BEFORE YOU FINALLY MOVE ON?!’

I’m sitting here shaking my head

Because, after everything

And I still don’t have the answers to any of that

The Only Way Out Is Through

It’s been something like two and a half weeks since I lost my mind
Countless days and nights that I haven’t felt like myself
That my skin hasn’t felt like my own
Two and a half weeks since I went to two different emergency rooms
Two and a half weeks since I spent the night at a crisis centre
Two and a half weeks since I first lost my appetite
Two and a half weeks since I first started having irrational and obsessive thoughts on top of multiple panic attacks per day
Two and a half weeks since I became scared to be alone
Scared in my own home
Scared of my own mind
It’s been a week and a day since I came to stay with my parents
It’s been a week and a day and I’ve only been comfortable being left alone once for a short period
It’s been a week and a half since I told my neuro psychiatrist what I was experiencing
It’s been a week and a half since I went back to my old full dose of Paxil
It’s been a week and a half of 3-4 Ativan per day
It’s been a week and a half of nausea, grogginess, headaches, crying fits and having my appetite return
It’s been a week and a day since I haven’t went to bed in my own home
Where I haven’t seen Joey either right before bed or as soon as I wake in the morning
A week and a day since I last napped with my dogs
4 days until I call my neuro psychiatrist to let him know how I’m doing
5 days until I start paying for Cognitive Behavioural Therapy
Unknown days until I return home
Unknown days until I don’t wake up afraid of a day filled with panic attacks
Unknown days until I don’t fall asleep fearing another day of panic attacks
Zero days that I haven’t wished for a different life
Zero days that I felt like I had the strength, courage and determination to get through this
Today though…is a special day
It’s the day where I wrote
Today is the day that I got my voice back