Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
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
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?
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:
And who in their right mind would want that?
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. ❄️❄️❄️
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.
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 🙌🏼✊🏼🤞
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
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 I think I’ve got this
I’m all over round 2 of Lemtrada treatment
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
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
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?
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…
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!