‘I will take what is mine with fire and blood. George R. R. Martin

I’m still trying to digest everything that’s happened in the last month or so…

Sometimes it feels like it’s all happening to someone else

And other times I feel like it’s happening to me over and over

Like a weird Groundhog Day movie thing

Things were so off leading up to going to Florida

That I feel like I’ve never really regained my footing

Maybe I came back to Toronto as someone else

I don’t know

Except it’s been fitting with the way my life has always sort of seemed to go

You know the saying:

‘If it wasn’t for bad luck I’d have no luck at all…’?

Right now looking back at Florida

It seems like a really bad nightmare

I was so sick

And I didn’t know why

The bruises appearing out of nowhere

And the blood

Well I won’t gross you out with the details

Suffice it to say

It was unpleasant

After returning and finding out about my super low platelets

It all seems like a blur

I had a very rare reaction to the IVIG called aseptic meningitis

Which essentially mimics meningitis symptoms such as the headache and neck pain

It eventually passed and I got through it with the help of some hydro morphine

It was frustrating to be in the hospital bc no one listened to me when I explained that I was only there because of the headache/neck pain and not for the low platelets

They didn’t understand that my platelets were a result of the Lemtrada treatment and kept saying but you had the last dose over a year ago

While I do have notoriously bad luck

For some reason I was gifted with an incredible hematologist doctor from St. Mikes

She gave me her email address

And responded to my many emails

And even contacted Humber to explain my situation and why I could be released

From the minute I met her

I knew she was different

She cared not only about my platelets but about my mental health as well

Truly not something I’ve often experienced

Even while being treated by ‘mental health professionals’

After leaving the hospital I was so bruised and sore from all the blood tests and I won’t even begin to explain the bacterial infection I picked up from the hospital

I had another blood test early in the week and then a follow up appt at St. Mikes later in the week

I tried to not obsessively check my results

And waited until late in the evening

My platelets had risen from 28 to 46!

While still nowhere close to being normal (150-400)

It seemed to be going up

I’m back from my follow up with hematology now

It wasn’t the worst case scenario I was imagining

Nor was it the ideal situation

Nope

It was somewhere in the middle

I have ITP

We don’t know if it’s permanent or not

We have to wait and see if my platelets continue to increase

The doc explained it as there are three possible scenarios:

1. I did the IVIG and I recover my platelets and ta da! The end

2. I did the IVIG and I recover some platelets but relapse and will need some sort of treatment

3. I did the IVIG and there is no improvement and will need an alternative treatment

I’ll have to wait and see which category I fall under

The real bummer from today is learning I will have to continue with weekly blood tests until told otherwise

For the record

In case you’re wondering

Or if anyone asks

I haven’t become a pro at the blood tests

It still is a big deal for me

And I still dread them

Despite this

I’m still here

I did some art

I sat outside with my dogs and the sun shining on my face

I listened to more audiobooks

This is my life

For right now

And I’m sorta okay with that

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‘Life is a cruel teacher. She’ll test you first and give you the lesson later.’

This is me after 2 days at St. mikes emerge getting IVIG treatment, 20 plus hours at Humber’s emerge, blood tests in the high double digits, uncomfortable beds and a long night where an elderly Italian woman was wailing my name along with some other choice words and howling the night away. Oh yeah and I’ve been waiting for my antidepressants since 6am. Life. 🤷🏻‍♀️

‘What else should I be? All apologies’ Nirvana

I wanted one week

Where I could pretend to be like everyone else

Where I could pretend to be the wife you deserve

Where I could pretend to be the person I always wanted to be

Instead I got a day here or there

I was too greedy when I wanted a week

I should have known better

I should have asked for a moment

Maybe two

But a week of unadulterated happiness

Just wasn’t meant for me

And so you had to suffer too

Because once upon a time you were unlucky enough to fall in love with me

This is what your life will be like

What it has been like

Hospital visits

Stomach aches

Crisis centres

Tears

Panic

And so many sorry’s that just get stuck in my throat

Making me choke

On nothing but apologies and regret

Sorry’s that your ears will never hear

Because to utter them might make you wonder the same thing I always do

‘Why the hell is he still here’?

‘Yes, they’re sharing a drink they call loneliness But it’s better than drinkin’ alone’ Billy Joel

I never thought that finishing a mental health group program at a local hospital

Would remind me of a challenge I’ve often faced in my life

It’s called ‘loneliness’

One I’ve struggled with throughout my life

‘Loneliness is often defined in terms of one’s connectedness to others, or more specifically as “the unpleasant experience that occurs when a person’s network of social relations is deficient in some important way”.’-Wikipedia

I can’t recall the first time I felt lonely

I remember watching home videos of me as a kid at a birthday party

I was standing by the wall

Watching as all the other kids played and ran by me

I wonder know if that little girl felt lonely

Even in a crowded room with other kids laughing and playing

The last time I can clearly remember not feeling lonely was when I was a kid and I had two cousins who would sleep over for days at a time

Even during the school week

We went to school together too

But it was over too soon

Because when I became a teenager everything changed

Adolescence was a fucked up time for me

I felt like an outsider who didn’t really belong anywhere

And I don’t think I ever really found my niche

Until recently that is

Until the group that I was in at the hospital

The misfits

I wasn’t alone in the group

Even lost in my own thoughts

There were people beside me

Who knew

Who understood

There is nothing as intoxicating of a feeling as being understood

Of course we exchanged numbers with promises to stay in touch

But promises don’t always last and we all forget

Anyway that the group is over

And I’m not working

I find myself alone a lot

Being alone isn’t a bad thing per say

But it does give me too much time to dwell in the feelings that being alone brings

It’s empty and hollow

Like a cave

And sometimes I just want to leave this cavernous space

And be around people who get me

But I’m sort of stuck in this time and place

And I’m worried that if things don’t change

That lonely small little girl who watched the world go by

Will become a lonely sad old lady

Who is watching the world go by…

‘The Bravest Thing I Ever Did Was Continuing My Life When I Wanted To Die.’ Juliette Lewis

It’s the eve of my graduation

Tomorrow I will graduate from the Taking Charge Program at Humber Hospital

Where I’ve been going two to three times a week for the last two months

I remember in the days leading up to the start of the program

I had no hope that things would improve

I had no hope that I would learn anything or experience anything life changing

I was so wrong

In this program I’ve had the fortune of meeting people

Who are like me

Something I’ve not experienced often, if at all

Sometimes one of us will be talking and I’ll look around and see others nodding their heads

Or we can finish each other’s thoughts

It’s uncanny

How a group of totally diverse strangers could share such intimate details of their lives

And bond in such a way that makes me wonder what I’ll do when I don’t get to see them so often

Often the stories are sad

Or frustrating

Or disheartening

Or just too fucking familiar

But there’s this weird sense of comfort in all of it

The comfort you feel when you’re just completely understood

Even in the midst of all your fucked up-ness

I’m proud that I made it through this program

I’m glad I forced myself to talk, share and listen

Even on the days when I wanted to remain curled up in bed

I’m honoured to have been part of this wonderful group of misfits

I didn’t think I could learn more about myself

Having been through this so many times

But I did

I learned about myself

I learned that in the end

Even after all the shit and hurt and pain

I can still be in such awe of life

And I’m still willing to do whatever it takes to do more than simply exist

I want to live

‘Armed with skill and it’s frustration. And grace, too.’ The hip

There’s something about the sight of my hands covered in paint or glue

Chipped nail polish and stained fingers

It’s the look of hard working hands

It shows the world that I’m a hard worker

Valuable

A member of society

Even though I don’t feel that inside

It reminds the outside world that I still exist

It hints to the world around me that I’ve gone through my share of battles

Battles I still go through

It allows me to feel purpose

Even though most days I’m walking through life without an idea of why I’m still here

And yet I still feel pride in my tarnished hands

It’s similar to how I feel about my collection of tattoos

It illustrates to the whole world

That I was here

That I’m here now

That I’m alive

That I’m still surviving

The only difference is now I’ve got the battle scars to show it