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,



I’ll leave the forgiveness up to your choice of god

A fellow MSer and blogger recently wrote about forgiveness (check it out here https://fightmsdaily.com/2018/03/17/forgiveness/) and it got me thinking

Forgiveness is such a complex topic

So often we tell ourselves and others that we have forgiven

But what does that even mean? And what does that open ourselves up to?

Is forgiveness merely acknowledging that the offending event occurred and then accepting it?

But what happens after the acceptance?

Do you simply ignore the feelings that come along with the event that precipitated this act of mercy?

Read back to what I just wrote

Ignore the feelings

You didn’t choose the event that occurred

However you choose to allow yourself to remain ignorant

You know what happened

You know what that person did or said

And yet you turn a blind eye to what happened

After you’ve let said person off the hook

So that persons guilty has been appeased

But you

The forgiver

Have now placed yourself in a very vulnerable situation

Like sitting with your back to a door

You’re the very fodder of know better stories we recount to our friends

Tsk tsk tsking

You’re the person in cautionary tales

Don’t be like so and so

X did that to her and she forgave them

Only giving them the opportunity to do it once again

Poor ignorant so and so

I’m not saying to never forgive

However be aware of what the motive is

Forgiveness is for the other person

You on the other hand

Are forever changed

And now you must proceed at your own risk

That first time

Is enough of a warning for me

I choose to be unmerciful

I choose to be angry or hurt

I choose to never allow someone the opportunity to come back for seconds

I choose myself over making you feel better

Fool me only once

The mind is a terrible thing to taste..

It’s too much

It’s too hard

It hurts too much

I’m too weak

I’m not strong enough

It isn’t worth it

You’re too sensitive

You’re too moody

You think too much

You need to let things go

They think I don’t try hard enough

They think I do it to myself

They think I should just get over it

They think I always feel sorry for myself

Mostly they’re right

I don’t want to feel like this forever

I can’t keep doing this

I’m so tired of all of this

I’m too weak for this shit

I’m just so tired

I wasn’t made out for this

Maybe if I didn’t spend as much time as I do battling the thoughts in my own head

Maybe if I wasn’t so hard on myself

Maybe if I didn’t compare myself to others

Maybe if I didn’t get lost in this sea of maybes

I can’t even imagine telling the youth I work with the same things that I tell myself every single day

And if they told me they were having those very same thoughts

I’d help them tear down every last one of those deceitful thoughts

I’d tell them that sometimes their minds play tricks on them

But that they have the power to change their way of thinking

By using evidence to prove those thoughts wrong

I’d say ‘you say you’re not strong

But you survived x, y and z’

And they’d look back at me not believing a word

And then I’d say

‘You say you don’t want to feel this way forever

What are you doing to change the way you feel? ‘

They’d hang their head, and reluctantly answer that they’re not doing anything to change their feelings

I’d respond with ‘You know it won’t happen over night

Sometimes the things that will make you happiest, take time and a lot of effort to get’

They’d look back at me

And I could see in their eyes

The minute

The second

That it clicks for them

That they get it

And they know that I’m right

That they have the power to change their lives

They hold it in their hands

They’ve always had it

They’ve just got to find it

And yet

Even after all these years

And all this time

And still

I can’t

For the fucking life of me

Find it in myself

The needle and the damage done

Hit a wall

Monthly blood work time yesterday

This is never a fun time

My veins play hide and seek when it’s time


It’s a thing

Look it up

But yesterday was a whole new bag of tricks

They think my veins in hands have collapsed and are clotting Collapsing veins

Like a fuckin junkie

So they couldn’t finish the testing

I’ve gotta go back in a few days

I felt and still feel frustrated

My hands are bruised up and sore as hell

Whatever that’ll heal in time

I know this


I feel discouraged

I just keep thinking

Another four years of this

What the fuck was I thinking?

‘I’m a spokesman for myself. It just so happens that there’s a bunch of people that are concerned with what I have to say. I find that frightening at times because I’m just as confused as most people. I don’t have the answers for anything.’-KC

I feel all this pressure on me to be this inspirational and motivating figure because I have MS

I didn’t choose to have this

I woke up one day and my eye was blurry

That’s it


If I had a choice

Obviously I would not choose MS

I’m not going to give you some bullshit story that MS has made me realize so much and that I’m grateful and blah blah blah

This isn’t some made for tv special

This isn’t a televised charity fundraiser

And I am not the fucking face of hope

I am a human being

Who happened to have a lot of shitty things happen to my body and brain

I could sit here and wax poetic about how although I was dealt a shitty hand, I’m going to persevere and make life all butterflies and rainbows

But I’m not that person

I won’t pretend that I am either

So that you dear reader feel comforted

So that you dear reader are inspired by my bravery

So that you dear reader can tell your friends how amazing that woman with MS is for never giving up

My job isn’t to try to be the main character in the feel good story of the day that you pass on to your work colleagues

I’m not sorry that my honesty makes you uncomfortable

I’m unapologetic that my truthfulness is too depressing for your delicate palette to digest

I have MS and mental illness

I did not choose them

And they both bring with them burdens that I can’t even begin to express

But I have a choice in this

And my choice is to speak my mind

To lay my honest feelings out there for the world to bear witness to

Or to ignore

In a world that has made so many choices for me

It is my choice on how I wish to exist in this world

And I choose to exist on my terms

Despite what people might think

I do see the beauty in life and in the world

But the beauty I see is in the flaws

The fault lines of the world

And the imperfections in people

Beauty wasn’t meant to be enjoyed by the masses

That is neutrality

And neutral is bland and boring

My world is not just shades of black and grey

I see colours

I vacillate between them being so vivid it hurts my eyes and my heart and my breath catches in my lungs

And other times they are so dimmed that I long to remember the way a certain colour is reflected in the light

I’m sure I could find a way to stomach writing platitudes in every blog about the wonderful things MS has given me

I’m sure that might even get me noticed in the blogosphere

And I might not be able to predict the course of my illness

Or if my anxiety and depression will worsen

But I know with unequivocal certainty

That I would rather die a thousand deaths

Then live for even a second pretending that MS and mental illness are really blessings in disguise

Let’s not make martyrs out of ourselves

I’m not suffering for the cause


Fuck that

I want to wake up one day as a person who does not have anxiety, depression and MS

The person I’ve only ever been in my dreams

The fire and the damage done

My life has been compartmentalized into three sections

Before anxiety

During anxiety

And after anxiety

Before anxiety I was 17 years old

Naive to the world in so many ways

And somehow also much wiser than I should have had any right to be

Before anxiety doesn’t feel like a long period of time

And I can’t help but look back upon with a wistfulness

Because I did not know then how bad it would get

During anxiety was a vast period of time where days and months have blended together to give me only a drug addled memory of what it was like

I remember fear and ambulances and hospitals

And the overwhelming sense of dread that things would never be good again

I remember wanting so desperately for there to be a reprieve

From the thoughts racing in my brain

Chasing away my sleep and my appetite

And it never came

Until it did

I fought my way back

So hard

Until it became

After anxiety

I can’t even remember the moment where I realized I could go out without needing to be extra medicated

I feel like I should remember that

I should remember the exact moment that I didn’t need to clutch a bottle of water in my hand to face the world

I want to remember the exact second in time that I stopped having to counter every anxious thought that popped into my brain

The best I can remember

Is that it happened

And somehow

The last thought before bed wasn’t about having a panic attack

And the first thought upon waking wasn’t about having a panic attack

I feel like maybe if I remembered those moments in time

I wouldn’t have taken it for granted

And maybe just maybe

I wouldn’t be where I am right now

Triggered by a situation outside of my control

Feeling like once again the world is a scary dark place

That I need to protect myself from

Because that’s it really

That’s the thought that I cannot talk myself out of

I can’t provide evidence to counter that thought

Yes of course there is good in the world too

I know that

The yin and yang and all that

But that doesn’t change that fact that I am afraid of how the world will fuck with me

And why?

Because I have solid evidence that reminds me I am right to be fearful

To feel the need to protect myself

To feel the unnerving desire to flee

And I’m afraid that no amount of good will ever change that

Just because you put salve on after the burn

Doesn’t mean you can’t remember the excruciating pain that the burn caused you

Doesn’t mean you don’t still have the scars where the blisters bubbled up angry and red

It doesn’t mean you can go back to what it was like before the fire changed you

Marked you as it’s victim

Sure you can cover it up

Pretend it didn’t happen

Or maybe you wear it proudly

Tough as nails like you’re nobody’s victim

But the next time there’s a fire and those flames flicker a little too close

Instantaneously you are transported back to the moment

When the flames claimed you

And you cannot help

But to take a step back

You won’t let yourself get burned again

Not this time