11 months and an eternity

I have just received word from the MS one to one nurse that I have been medically cleared for Round 2 of Lemtrada!

I got this just as I was getting ready to go back for my monthly blood work after my failed attempt last week. And I survived it. ✊🏼

I will likely be doing treatment at the end of April. Its been a long hard year but I’m still here. I certainly never thought I was strong enough for something like this…but I did it, didn’t I?

And I can’t believe I’m saying this but I’m fucking ready so bring on round 2 motherfuckers!

Stay tuned,

A

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And she lived…

So as some of you may know MS has caused ongoing vision problems for me

I’ve had optic neuritis several times

Each time it has stolen a piece of my vision 

Only to return it scarred and less functional

I used to be an avid reader

‘Used to’ 

It makes me sad to even write that

I would devour books so quickly and effortlessly

I took that ability for granted

I never thought there might be a time when I wouldn’t be able to

I can still read

But it causes pain and irritation in my eyes 

So I started listening to audiobooks

But it’s different now

For some reason the books of before

Don’t hold my attention through listening 

So I listen to fluff

I listen to romance audiobooks 

With happily ever after endings

The old me would have snorted and scoffed with derision at this shit

But anyway

That’s what I listen to these days 

A few days ago I started listening to an audiobook that had tons of positive reviews 

People wrote that it was sad and beautiful and romantic and they cried

So I gave it a go

The story progressed nicely

The hero and heroine met and fell in love

The heroines sister was ill and eventually passed away

I thought to myself ‘that was pretty sad’ and was glad I’d moved past the sad part in the story 

And then

There was an incident in which the hero ended up in the hospital 

And his nurse said he’d likely have to start a round of Solumedrol 

Shit

I thought

I know what that is

It’s a steroid for inflammation

Don’t let this go there

I kept listening 

The heroine had heard of that drug before as well since her sister had battled Huntington’s disease 

The hero and heroine looked at each other and the heroine asked, with tear filled eyes if the hero was sick

The hero, with great trepidation and a heavy sigh (that only someone with a burden knows too well) states that yes he has a disease

Shit

I thought

Don’t let it be what I’m thinking 

He says he has Relapse Remitting Multiple Sclerosis

Pause

For me anyway

I don’t know what the heroine said

I don’t know what the hero said

I stopped the audiobook

I guffawed

Seriously

I fucking guffawed

I got out of bed

I turned on the lights

I got annoyed

So fucking annoyed 

Why did this guy have to get MS

MY kind of MS

What kind of fuckery is this?

Who fucking gets MS in a romance book?

I felt cheated

I passed the sad part of the book

I wanted the happy ending

I needed the happy part where everyone is happy and safe and healthy and the hero and heroine get their happily ever after

I did not want to relate to the fucking hero’s sad shit

Full stop

I got annoyed and irritated when I found out I had MS

When I learned that it was MS causing the blurred vision 

Then after learning about MS and the possible course of the disease

I felt fucking cheated

This was not supposed to go this way

I conquered anxiety

I manage my depression EVERY damn day

This was supposed to be MY time

Even though I wasn’t reading romance books then 

I’d read enough books at that time to know

That every great heroine has to overcome a battle

And I did

With great difficulty

With a lot of pain

I was ready for the happy ending

I expected it

Where was my happy ending?

I don’t mean the drivel with the love eternal and the wedding bells, 2.5 kids, house and a white picket fence

I mean the part where I get to live out the rest of my life in peaceful contentment

Feeling like a heroine 

Cause I’d slayed my beasts

And then it came to me

This is why I’m so pissed off with MS

So angry so much of the time

Because I don’t know how this story ends

I don’t know that the heroine is happy in the ending

I don’t know how she’ll live out the rest of her life

It’s like living in a perpetual cliffhanger 

I don’t know how MY story ends 

I know how I WANT it to end

But MS came and put a big huge ‘WHAT IF’ across the page 

I don’t want to worry about the what if’s 

I don’t want to lose sleep over the what if’s 

It’s too many blank pages 

Some might say that’s the same for everyone

But that’s bullshit 

We know the most people will not lose their vision

Most people won’t be wheelchair bound 

(My two biggest fears)

I want to hit play on the audiobook 

And accept that the hero does have MS

But I want to hear that the hero wins

I need to hear that the hero 

gets his happily ever after

But what if he doesn’t?

What if I don’t?

So I’ve left it on pause

To be continued

It’s a picture of time frozen in place after which the hero and his love are together and he happens to have MS

And I’ll leave it there

An epic and everlasting ‘to be continued’

Nothing bad has happened yet

And everything is a possibility

That’s my happy ending

The aftermath


It’s been a bit of a blur. The week leading up to the infusion, the actual infusion and now…the aftermath. Leading up was mostly filled with doubts and anxieties while the week of was so surreal. I never thought I could be the type of person to actually do what I was doing. To wake up each morning go to the clinic and come back and do it all over again the following day. Just so fucking surreal.

But it’s over for this year. Now I focus on healing, on building my immune system back up, on avoiding infection and work on strengthening myself (maybe inside and out).

Physically, I feel like I just survived an epic battle. I’m bone tired and I’m quite sure I look like death. The steroids are doing a number on my body still, heat flashes, hunger, irritability…you know an average day in the life of Angela. 
I’ve felt some side effects but it’s been manageable thus far. The wise and formidable Nurse S told me to take the meds before the symptoms become too intense and like a loyal patient I’ve followed her orders.
Right now I’m mostly worried about Joey and him burning out. In the social work field we often talk about self care and the need to be your own priority and I’m pretty sure he’s not doing that. So dear reader if you know Joey and you’re reading this, invite him out for a coffee, a beer or a burger. I tried doing some of my youth work shit on him, you know with the circles of what he can control and not control but I’m pretty sure he thinks I’m just high. And I think we can all agree that might not be such a far-fetched thought. 😏
Since people have asked, I’m not able to have visitors (even the healthy ones) for another week or more. And after that, am under strict orders to limit contact with non sick people and maintain highest of hygiene standards and if I absolutely must go forth in the world, I should wear a mask. I’m not entirely sure how I feel about the mask. But I think it might be fun to scare people with and pretend that I’m protecting the general public from me and not the other way around. We’ll see about that. 

For right now, I’m going to enjoy my seclusion with Netflix and chill and dogs and husband and the occasional drug cocktail. 
Life goes on,
Angela xo