One May Have Good Eyes Yet See Nothing

I started to write an update as it’s been two weeks since my last infusion day…

But everything seemed so trivial when I saw it typed in front of me

There’s so much that I want to say and yet it doesn’t feel like it would amount to much

So I’ll make this brief and say the only thing I’ve really been wanting to say:

I’ve been watching TV like all day every day

The bingeing kind of TV watching

The kind I’ve been unable to do in so long

And I was scared to say this aloud or type it out

But fuck it it’s my blog after all

My eyes don’t hurt

I’ll say it again for the people at the back

MY FUCKING EYES DON’T HURT!

I can’t remember a time when they didn’t hurt

It’s been that long

How crazy is it that I can barely remember the before MS version of me

I’m not foolish enough to think this is permanent

But for now I’ll relish in this moment

Temporary and short lived or not

And if it all comes back in the blink of my eye…

Write. Write until it stops hurting.’

-Anais Nin

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I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe

A bruise by any other name

A bruise is like a badge

You’re not just handed one

You earn your bruises just like a badge

A bruise means you showed up

It signifies that you actually ‘did’ something for a change

That bruise carries with it the same honour as a trophy raised above your head

It says ‘hey world this might not mean anything to you but to me it means everything

Your bruise is one of a collection of bruises and scars

They are proof

In the flesh

That you’re real

That your battle is real

It’s evidence that you are still here

Inhabiting this world

This universe that you’re a part of

Left it’s mark on you

And you are treasuring it

Like the beautiful reminder that it is

Watching the marks build up

With a sense of awe

At what you’ve accomplished

In this life

Stretched out in front of you

Like a winners banquet

These bruises of mine

Look like victory

If only they gave out awards for worst sick person…

I am the worlds worst sick person

Specifically when I’m nauseous or feel like I’m about to throw up

My anxiety spikes

I feel like I’m going to die or go crazy simultaneously

Before you rush to sympathize and reassure me that I’m not, read on

I demand Joey stay beside while I ward off the evil nauseous feelings

But not move the bed in any way

I want him to keep his hand on me in someway so I know I’m not alone

But not too firmly

Lest his touch spur the nausea

I want him to talk

But not about anything to do with food

Which for a chef is like asking a new parent to not talk about their baby

And not too loudly either

The sound waves might make me hurl

Last night, I took Gravol and Ativan

And put an ice pack on my head

The lights off

And I asked Joey to tell me a story of when he confessed his ‘like’ for me

It’s a funny story

And always makes me smile

This time didn’t disappoint either

As soon as he gets to the part where he recalls telling me all those years ago that he’s ‘been digging me as more than just a friend’

I crack up

I was still nauseous

But it was better

He reminded me of how I planted a kiss on him

And he sprinted around the neighbourhood on such a high

Than he told me how because I was vacillating between telling him I liked him and not wanting to change our friendship, he was a nervous wreck

I remember that too

I was worried that we were too different

My dark to his light

I didn’t know then how much it would matter that he was my opposite

It seems simple now

The biggest fear was that we would lose a great friendship

I didn’t know then what I could possibly be gaining

The dude that puts my socks on when I can’t

When I’m nauseous the dude who tells me it’ll pass

Gets me ice packs

Regales me with stories from the past

Tries his hardest to not move the bed (which if you know him, you know is nearly impossible)

So yeah I may just be the world worst sick person

But who fucking cares if the one person I want by my side, can withstand the bumpy (read: nauseous) ride with me?

A look on the (very) (red) bright side

Why bother sitting in the sun for hours when you could just straightline 1000s of mgs of steroids to get that same sun burned look. 🤦🏻‍♀️😡😤It’s funny how the steroids are to help our bodies deal with the Lemtrada infusion but also seem to deliver the most obvious side effects. I’m now laying my head on an ice pack in a air conditioned room with a fan on. So essentially it’s the equivalent of hot humid Toronto day.Send cold provisions. ❄️❄️❄️

No pain

Been in bed for a few hours and feeling drained to the bone but I wanted to jot some notes down.

Today was day 3 of Round 2 and the end of the treatment cycle. Hoping I will be among the many who haven’t needed a third cycle.

Today was comparatively easier than the last two days and had my awesome zen and calm sister by my side today who was a super caretaker.

I had one major spike with blood pressure where it went up to 160something over 111. But managed to make its way back into safer territory.

I was nicely drugged up for most of the morning into the early afternoon and felt little more than the Sahara desert of dry mouth and throat.

While doing my infusion I met a fellow MSer who was getting Tysabri treatment (which I was ineligible for due to previous exposure to a virus). This Misfit of a warrior has been battling MS since she was 17 and has been through her hurdle of using a walker and I’m sure much more but has since done well with Tysabri. Wishing her and everyone else on this weird fucked up ride of MS, nothing but strength, courage and good vibes.

My nurse Christine today was excellent as were the other two and I even got to see Nurse Amanda who rocks!

I hope this made some sense as I’m pretty doped up at the moment. 🤤

I won’t even begin to describe how many pics had to be taken of me throwing up the round 2 day 3 hands. I just couldn’t get it right! You’re welcome world!

But I just wanted to say I fucking did it! I did it! I can’t believe I did it and yet here I am with the bruises and soreness to prove it.

All of you in real life and in the cyber world have made my journey somehow a little easier, a little less lonely and have given me a whole lot of support. Much love and respect to you all.

Although there is a slight possibility that this may be the drugs speaking or just allowing me to be more honest, either way take it while you can. 😂

Day 3 has made for an achey, tired and woozy little warrior.

Who is off to bed in hopes of deep blissed out sleep and with whispers of hope on her tongue for a better tomorrow.

🙌🏼✊🏼🤞✌️

“In the midst of winter, I found there was, within me, an invincible summer’ -A.C

Round 2, Day 1 Down of Lemtrada treatment

The day got off to a rocky start as I woke up at the crack of my ass (aka 4am)

After taking the dose of Prednisone, I started experiencing intense leg cramps or spasms

Aside from that, Joey was my first guest to join me today and we headed out to the clinic around 745AM

I was disappointed to find that Sharmela was off on mat leave but was sooo grateful to have the awesome Amanda in her place

Amanda was a straight shooter and her calm demeanour aided my own to chill the fuck out

There were a few glitches in the beginning with a faulty line in that just spurted some fluid and has left a grotesque and slightly painful bump on my hand

Second shot went in fine

Did the usual Solumedrol dose

Yippee more steroids

And then an hour later onto Lemtrada which is delivered intravenously over 4 hours

Lunch was a tough sell and my appetite was wonky at best

There were a few scares

Namely my high blood pressure and accelerated heart beat

And the muscle cramping in my legs was at some points unbearable

But my good nurse doped me up and got me through it

We stayed for the roughly 2 hour observation time afterwards to ensure no major reactions occur

And thankfully they didn’t

Amanda wrapped me up and left the port in for easy access (😬) tomorrow morning

But all I feel is like the warrior I am wrapped up and ready for more battle

We got home around 530PM this evening

It was a long ass day and we were both proud of ourselves for having pre made dinners to be heated up over these next few days

I’ve now eaten a bit more at dinner taken more antivirals and can honestly say I rocked the fucking shit out of this first day

I was tired, cranky and spastic and I still made it through (blood splatters, trapped IV tube blood and all)

Yay fucking me

I want to leap on trees and scale gates and scream so loud that I lose my voice because I discovered something in me

Maybe only a mystery to me

But

I know I can fucking do this

I’m going to take more drugs cause I ain’t no hero and like Samuel L Jackson urges your damn kids to do, I’m gonna take his advice and ‘go the fuck to sleep’

👊✊🏼✌️