Some days are just like that…

I guess this has become like a journal for me

I write here and I don’t care who reads it

Or who doesn’t

It’s cathartic

In ways that I can’t even express

So Dear Diary,

I had a bad day

Maybe a bad few days

After increasing my dose with the gabapentin

It had a really sedating effect on me

I take a lot of other meds so it seems with the increase

I was just being knocked out

So I’m back on the one pill

Still in pain

So I’m not sure where that leaves me

I called the clinic to inquire about a lesser dose

So we’ll see

I also had my monthly labwork

It’s for both Lemtrada

And for my low platelets

The nurse came to the condo again

It didn’t go well

A vein blew

If you have a blown vein, it means that the vein has ruptured and is leaking blood. It happens when a nurse or other healthcare professional attempts to insert a needle into a vein, and things don’t go quite right.

Healthline.com

I’m in a lot of pain

My left hand

My right arm

Today life is hard

Tonight I just want to close my eyes

And hope that when I dream

There is no pain

No fear

No regret

‘Let’s go to Never Land and never come back till forever ends.’

Yesterday I dreamed I was free

I could move freely

I could fly anywhere

My mind was a safe place

It was like a children’s playground

That I was free to explore

I could stand in the middle of the universe

With my arms outstretched

My head lifted to see the sky above

My eyes wide and bright

The world I saw was clearly defined but with no sharp edges

I could see kindness pouring out of strangers faces

I felt warmth

All around me

It was like having some soup on the coldest day of the year

And in that moment every thing is just right

Even if it’s only soup

And it’s only a dream

But morning comes too fast

And the sun is too bright and it hurts my eyes

And it’s too hot and my arm throbs

And nothing feels as soothing as that soup did

I woke up

And all I see are sharp edges and corners that lead to scary places

People aren’t so kind

And I’m warned not to go outside

And the only place I can stretch out and look above me

Is on my bed

And so all I can do is

Hope that when sleep takes me

My dreams are about playgrounds and hot soup on a cold day and kindness all around me

But maybe if I close my eyes really right

I can stay in that dreamland just a little while longer

Just another uninspiring sick person

This is how I look when I’ve been waiting a week for the MS CLINIC to call me back after reporting a new symptom. I’m not surprised but I’m disappointed. Of course I want to live in a world where MS doesn’t exist but im not a dreamer so what I actually want is to live in a world where people with all types of illnesses can get the help they need. Especially when they reach out. Twice. It’s hard not to feel abandoned and isolated when literally no one can offer you help. Yes I know be strong, keep fighting and all those other phrases meant to motivate…but sometimes I want to lay my sword and shield down and just be a scared vulnerable person who sometimes just needs some help. This is what it’s like having MS in Canada, the country with one of the highest rates of MS. -rant over

Fuck MS

‘Life is a a journey I don’t have a map for’

MS symptoms are weird and scary and often come at the worst times

My initial symptom was optic neuritis which is an inflamed optic nerve and caused pain and blurriness

Along the road

I guess I’ve been fortunate that my mobility hasn’t really been affected

I don’t know if sciatic pain is associated with MS but that’s affected my mobility the most

Fatigue has been a constant

It’s not your regular tired after a long day at work

It’s more like a body draining exhaustion

Like you ran a really long marathon

But all you did was shower

And no amount of rest makes you feel less tired

I get a lot of headaches which no one has been able to explain the root of

But they happen often and last for long periods of time

I also have a lot of neck pain which radiates upwards into my skull

I’ve had numbness come and go throughout the years

Sometimes it just happens

One time I was going down the stairs at my old house

And my feet just stopped working

It’s like they weren’t even there

I fell down the stairs

That was a surreal feeling

The heat has long been a problem for me

Like the perfect weather for a relapse

And if you throw some stress into the mix

It becomes the perfect storm

I’ve had some burning mouth symptoms and itchiness that have both come and gone

More recently

I’ve had some pain on one side of my face that I was unsure of

But no real direction was provided to me

And a new one is this weird burning in my upper arm area

It is so severe that I made my partner examine me for any outward injuries

Of course there were none

It doesn’t feel like a sore muscle

It literally feels like I had burned myself with a hot pain and every time something rubs against it

It just exacerbates the burning pain along my arm

MS is often a lonely isolating struggle

Your family doctor doesn’t really know much about it

And the neurologist doesn’t really care about your day to day symptoms

So where do you turn?

It’s really easy to feel lost in the disease

It’s like someone has blinded folded me and dropped me off in the middle of nowhere

I don’t have any travel companions or anyone to help navigate

Now I’m somewhere in the middle of this weird nowhere land with MS

And I would just like a fucking map

That’s all

‘…how blue the sky appears…blue enough to bruise a heart.’ Sanober Khan

Every time I scan my body for a bruise or petechiae

For the rest of my life

I’ll revert back to this past summer

And the disdain

I felt for my body

For betraying me

Yet again

I thought we’d come to an agreement after I lost my fucking mind in January 2019

I thought we were cool

Ready to coexist

Always together

Anxiety

Panic

Depression

MS

All of it

We were going to get through it all

But those damn blood bruises

A warning sign that my body wasn’t holding up its end of the bargain

Now even though I’m in some sort of remission

I scan my body

Hoping to not see those blotches on my skin

But when I do

Like this evening

I’m suddenly back to Florida in August

Angry

Afraid

Alone

With a body that was turning on me

A body that didn’t feel like mine anymore

I can’t help but miss the days when a stumble was just a misstep

And a bruise

Was just a fucking bruise

Check out my new Fuck MS artwork

I was diagnosed with Multiple Sclerosis in 2013. Since then it’s been a very bumpy ride. I was forced to
leave a career I loved and went through a very difficult time. I was lucky enough to have found art which has given me a peace I’ve never really known before.
The Fuck MS line was established after I began writing a blog under the same name.
These new pieces have a background of either the symptoms that can come with MS or the ignorant things people say to MS warriors. I think the image and words in the forefront are powerful and speak for themselves.
Fellow warriors, we’ve got this! 🖤

Check them and more out at my Etsy Shoppe https://www.etsy.com/shop/damagedgoodsshoppe

For now…

I participated in my first art show

How wild is that?

Two years ago, I would never have thought this would have been in my future

Leaving my job was probably the hardest thing I’ve ever done

There will always be an empty part of my heart because of that

The loss of it felt so strong

No one prepares you for the grief that comes with that

And as hard as that was

I was lucky to have found something that gives me peace

Back to the art show

I was so anxious in the days leading up to it

The day of was a nightmare

I felt physically sick

I told Joey I couldn’t do it

That I wouldn’t go

I felt like a fraud

Everyone would know that I’m not an artist

I’m not ‘one of them’

Somehow I made it there

We set up

My hands were like ice

My skin felt like it didn’t fit right

I looked around

In awe of the sheer talent of the artists around me

Real artists

What am I doing here?

This is going to be horrid

And then somehow

It wasn’t…

People perused the artwork I’d made

The artwork that has saved my life

The first few customers

Terrified me

I was so nervous I even made something up when someone asked about my process

How embarrassing

More people came

They bought stuff

They gushed over the artwork

My artwork

My face grew hot

I said thank you

But I wanted to say I’m not a real artist!

More people came by

More people bought stuff

The compliments I received were mind blowing

Some of the vendors bought MY artwork

Loved MY artwork

🤯

Mind blown

I sold over 25 pieces of art that day

I left there with a goofy grin on my face

I was exhausted

And so amazed

Things like this don’t happen to ME

I’m the one who gets MS

Who gets a rare blood disorder because of a treatment I had to undergo for MS

I don’t get the happy endings

Maybe the art show was a one off

Maybe I won’t sell anymore

Maybe it was all a fluke

Those are still the thoughts on a loop in my mind

And in spite of that

I still paint

I still decoupage

I find poems that resonate with me

I create art

And I’m kind of an artist now

Maybe one day I’ll say that without madly blushing

For now

I’ll just use the heated cheeks as a reminder of how far I’ve come

And that’s good enough

For now…

‘The Happiest Place On Earth.’

Today is Joey’s birthday

Last year at this time

I was living with my parents

My mental state was super fragile

We had cake for his birthday at my parents house

I remember trying hard that day

To put a smile on my face

To be brave

To not be selfish

For Joey

Because he deserved so much more than what he got

Because I always felt like we could have been so great

If not for all the obstacles

My challenges that have disrupted our life together

But today

One year later

We are celebrating his birthday at Disney in Florida

Joey gets to be happy

I feel good

Maybe sometimes magic happens

Maybe the universe and planets align

Maybe I worked my ass off to get to this point

Whatever

It doesn’t even matter

Bukowski wrote: ‘What matters most is how well you walk through the fire’

And I did

I walked through the fire

And survived

Sure I have the scars to prove it

But who doesn’t?

I’ll be in Disney this afternoon

Indulging my inner kid

She deserves to have some fun

Even if it’s a moment

I’m going to close my eyes really tight and try my best to savour the moments

I deserve it

So does Joey

PS. Happy birthday Joey 🖤

‘To be calm is the highest achievement of self’

Today is my anniversary

Notice I didn’t write ‘ours’?

Because this one

Well it’s entirely mine

Today marks exactly one year since I would rather have died than continue to live in the state of panic I was in

It might seem dramatic

I don’t know if I can explain the pain I was in

I remember my mom talking about how I was then

And she winced recollecting the sound of my crying

It was without a doubt the worst time of my life

That’s saying something

Since I’ve been through so much

Its strange to some people

That I would pick Multiple Sclerosis and the unknown

I would pick ITP and the biweekly bloodwork

I would choose those things in a heartbeat

I would choose those things if it meant never having to go through a mental health breakdown

Today

As I write this I’m in a much better place

Both literally and figuratively

I’m not freaking out at Humber’s unequipped emergency department

Pleading

No

Begging for someone to help me

Today

I will not focus on what I couldn’t do then

No

Today,

I’m at my home

That I share with my husband of 12 years

My two dogs

Vinnie and Benny.

I woke up this morning

I brushed my teeth and washed my face

I had coffee and breakfast

I rearranged some furniture

I did some art

Now I’m writing this blog

It’s all so unexceptional

And I am so fucking grateful