You know what they say?

Fourth try’s a charm.

Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼

On the 5th, 6th and probably 7th day, She rested

It’s a rare time when I don’t lay in bed tossing and turning thinking things over

Like why my first grade teacher said I was too quiet

Or why I have a phobia of blood

But this week has been different

I fall into these really deep sleeps where I wake up feeling like my body is being regenerated

No single thought is tossed around in my brain for an unnecessary amount of time

It’s kind of an awesome feeling

It makes me feel refreshed

I’ve had some negative side effects mostly from the steroids

And steroids?!

God damn!!

I swear the way they can make the most mundane food taste gourmet is amazing 😍

And there is NO hunger like a steroid hunger 🐷

But mostly manageable through medications

I keep trying to remind myself that it’s totally okay if all I did today was shower or sleep

Then my mind tries to tell me that it’s not normal to sleep all day

But when the hell has my mind ever been right anyway?

And when have I ever cared about things being normal?

🙌🏼✊🏼✌️🤞

‘Piglet noticed that even though he had a very small heart, it could carry a rather large amount of Gratitude.’

While I can’t say for certain one way or another where the storm of powerful emotions is coming from

Is it the high dose steroids, the cocktail combo of everything else and now the drastic withdrawal?

A culmination of the last several months, much of which was unpleasant at best?

I guess it doesn’t even matter

What does matter, is that like Piglet, I’ve noticed that my heart can carry an enormous amount of gratitude

And I don’t think gratitude is meant to kept bottled up. It’s like having a present and never giving it to the intended recipient.

I want to lay out some honest gratitudes in a way that doesn’t trivialize then into mere platitudes So bear with me while I navigate these murky waters

In can be hard for people drowning to see the good, the things to be grateful for

But I’m going to try

I am grateful for:

  • My partner in crime. Through thick and thin. Sick and sicker. Depressed and anxious. I know I could live without you if I had to, but what a sad sad life it would be.
  • My mom, mother in law and sister for each taking time out of their days to spend a day at the infusion clinic. Mainly being my go getters and entertainment and in Connie’s case, my calm. You each played such an important role in this infusion week. I am forever grateful.
  • My friends, my family especially my dad who wrote a sweet note for me every day on Facebook and even called me Bella 😭
  • I am so warmed and surprised by how many people reached out through a text, a visit, a phone call, a message or a line on some social media platform. Going through any hard time is always made easier when there are people who for whatever reason show their support in whatever way they want and can.
  • I am grateful for each of my three nurses who took wonderful care of me even knowing they’d likely not see me again. They were kind, understanding and never brushed off any of my feelings or symptoms.
  • I am honoured to have spent my time with all my fellow fighters and warriors (of the MS variety or not). I wish there was a collective magic pot where we could each leave a small amount of whatever it is that makes us fight so that when one of us is running on empty, they can dip into the reserves. So much of our fight is done behind closed doors, in beds and in darkened rooms, and I hope that more of us can find the courage to join this crazy fight together.
  • Finally I am sooo happy to have a family doctor who could send a script to my pharmacy for some good sleeping pills, and you dear readers should be happy too. Because no sleep and high dose steroid withdrawals makes for an extra less than amiable Angela.

And who in their right mind would want that?

🙌🏼✌️✊🏼🤞

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.

🙌🏼✊🏼🤞✌️

Day 2 got me like…

Super sleepy. Another great nurse, shout out to Matthew for dealing with me all day. Today the moms came with and not only kept me company but of course every other patient who came in for their much shorter infusions.

No major problems. Some leg pain, nausea and head ache. No appetite and extremely dry mouth and throat (weed smokers you know nothing until you’ve done this treatment).

PS I slept like a blissed out baby last night and am hoping the same drug cocktail would do the trick

PPS I heard from my employer, and I refuse to respond. She wrote some nonsense about not having had the chance to draft a confirmation of medical leave letter (that I took 3 weeks ago, but I’m bad at my job right). And wanting me to give them their phone like I’m gonna be doing that during this time. Pfftt 😤

Day 2 of Round 2 is done ✔️

1 more day to go 🙌🏼✊🏼🤞

“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’

👊✊🏼✌️

‘But black roses and Hail Mary’s can’t bring back what’s taken from me’

It’s with a heavy heart that I write this blog tonight

My doctor has assessed me and has determined that I’m not medically fit to work right now

So, I’m taking a leave

I’m not sure for how long

Starting now

Part of me thinks I can never return to a place that made me doubt myself so many times

Questioning my value

Questioning my worth

I don’t care what anyone says

It was personal

It still is

And I can’t pretend that doesn’t hurt

Part of me is terrified at the prospect of starting over

Again

I’ve never had to look for a job carrying the weight of an MS diagnosis on my back

I don’t know how I feel carrying that burden into a new environment

I’m scared to go from one unsupportive employer to another

Let’s be real shall we?

Who wants to hire someone who is likely to take a lot of sick days?

Even if said person is fucking stellar…

On the days they are there

From a production point of view

It just doesn’t make sense

In their terms

I will always be a liability

And not an asset

So where do I go?

Even with certification I don’t have enough letters behind my name to start up a private practice

I’ve never really learned to do anything else

But you know talk to youth

What will I do if I can’t do that?

I’m not so egocentric as to think there won’t be others who are more skilled at engaging youth than I

And I will be replaced

As if I was never even there

Maybe just a cautionary tale for new staff

I’ll just be another adult who abandoned the kids I currently work with

All that work building trust

Gone just like me

They’ll look back on their time with me with bitterness and a reminder to never let someone get too close

And I’ll carry that guilt with me

And let me tell you kid

I fucking get it

I trusted too

I placed faith in my employer

And I’ll look back on this time with bitterness and a reminder to never let anyone see your weaknesses

After all this and I can still relate to those kids so damn much

For them, I’m sorry

I don’t know what’s next

And that is probably why my heart is beating out of my chest and my stomach is warring against itself

What will I do while I’m home?

Will I get worse with nothing to occupy my needy brain?

Will I sit around in my pjs and anxiously pick at the thoughts reverberating in my brain?

It’s okay

And I think to myself over and over again,

Not every story gets a happy ending

Not even when I’m writing it

And especially not when it’s my story

And it’s okay

It’s gonna be okay…

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