‘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

Advertisements

‘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. 🤷🏻‍♀️

‘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

‘Expectation is the root of all heartache.’ Shakespeare

I’m starting a program tomorrow at my local hospital

It’s teaches coping skills for people with anxiety and depression

It is half days on Tuesdays and Fridays for 12 weeks, with a minimum of 5 Thursdays

It is a group format, run by a Social Worker, Registered Nurse and Occupational Therapist and overseen by a Psychiatrist

I’ll have a primary worker and access to the Psychiatrist during the program

At first, I was really intrigued and almost hopeful

Until I went for the info session

It was a few weeks ago

It was run by the OT who was jet lagged and seemed like she hadn’t a clue in the world of what she was talking about

I felt some of my balloon of almost hope deflate

I then went for an assessment last week with the RN, who sat impassively while I cried as she asked questions from her computer

I felt foolish and disappointed when I found out she would become my primary worker

I was accepted into the program and given a start date

Tuesday March 26

Tomorrow

I’ve promised myself that I will give it an honest open-minded try

After all, everyone has bad days and all that

And it would be reckless to throw away an OHIP covered 12 week program off of two measly meetings

Right?

Tomorrow, I’ll be there at 8:45 AM to start my first day

So maybe my balloon of almost hope won’t inflate

But maybe my ballon won’t pop either

And maybe

For right now, that’s good enough

‘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

‘Only In The Darkness Can You See The Stars.’ Martin Luther King Jr

Its been three weeks since I slept in my own bed

It’s been one month since I went to the first emerge

It’s been four weeks and two days since I spent a night in a crisis centre

It’s been four weeks and one day since I went to the emerge in Collingwood

It’s been three weeks and two days since I sat in my neuro psychiatrists office crying and begging for help

It’s been three weeks less a day that I went back on 40 mg of Paxil

It’s been three weeks of good days, bad days and horrible days

Its been one day since I saw my neuro psychiatrist again and he upped my dosage to 50mg of Paxil to get me through this ‘crisis’

It’s been one day since he told me there was a significant gap in the mental health system which is why my wait for OHIP covered CBT is taking so long

Its been one day since he gave me the info of a private clinic

Its been thirteen hours since I started my new dose

It’s been thirteen hours with my stomach in knots

It’s been thirteen hours of fears, what if’s and so much more hope than I ever thought I had

One day at a time never felt quite so long

I know I’m not patient

But I’ll keep waiting if it means I get even a small fraction of a happy ending

I’ll keep waiting if it means that the last month hasn’t been in vain

I’ll wait as long as I can keep finding shards of light in the darkness

I’ll wait even it’s just a flicker

I can’t help but worry

I can’t help but wonder how long the world will wait for me…