What I wish you understood:

I get tired really easily

The heat is unbearable for me right now

It’s hard for me to work up the energy to go out

I’m terrified that you will forget me

Right now I can’t do the things I used to

I want you to talk to me

I don’t want you to feel sorry for me

I want to be the old me

Even though I can’t really picture her

If you can

Maybe you could help me remember her…

‘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

‘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

‘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. 🤷🏻‍♀️