The Final Countdown

One week to go till Day 1 of Round 2 Lemtrada treatment.

I’m not as scared this time around and somehow more scared all at once.

Last time it was because I didn’t know what to expect and this time because…well I do.

I’m happy to report that I will have the same amazing nurse as I did for Round 1. I felt like I was so well cared for and that definitely eases some worries.

I’m less apprehensive about the treatment this time around and more worried for what comes afterwards.

Will the recovery be the same? Some have reported it as being worse while others have said it was easier.

So now I’m just waiting to pick up my pre meds to prep for treatment.

I’m mostly settled into the new crib.

Gonna make some healthy meals for infusion week.

My doc asked me why I seem so apprehensive and not looking forward to it.

And it’s not that I’m dreading it, I think I just have more banking on this one now.

Maybe this will be a game changer

Hell, I could really fucking benefit from one

Right about now

One week to go

🤞🤞🤞

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36 Years Old And Still Not Okay

Sick and tired

Running a low grade fever

Closer to treatment I get, the worse I feel

I feel like I’m nonstop fighting a flu

Tired of feeling this way

But honestly, I can’t even remember a time where I didn’t feel shitty

Where I didn’t feel sick

Or just generally unwell

Mentally or physically

Even pre MS diagnosis

Facebook reminds me of all the statuses I’ve posted over 10 plus years complaining over one sickness or another

Is it possible that I’ve never been really OK?

And I know what the optimists will say:

You gotta be positive

Things will get better

But I have no evidence to prove any of that as plausible

In fact all the evidence I’ve collected throughout my life points to the contrary

The evidence illustrates a life filled with sickness and struggle as a result

Try as hard as I might

And I cannot for the life of me

Think of a time when I felt…I don’t know even just OK

But that can’t be possible right?

No one can always have been and continue to feel like shit, right?

Is anyone’s luck that bad?

So is it my mood then?…

This is like a chicken and egg thing

And I can’t figure out what came first

Did my mental health change one day…

And then my physical body became sick?

And when did this all happen?

Because I’m looking back through the screen shots of my life and I can’t think of a time where I felt…I don’t know…good

But ‘good’ sounds so insignificant

I don’t understand it

And I don’t know how to fix something that I don’t understand

Then I worry that I’ll never understand

So where does that leave me?

Sick

And

Tired

At only 36 years old

And still just fucking lost

Road map

I was 18 years old

I had just gotten my very first tattoo

In Montreal with my good friend

I got a tiny little fist

It took maybe 15 mins

And then we walked to a park

And I had my very first panic attack

This picture was taken when I walked away not really explaining myself to my friend

I don’t remember ever experiencing a feeling quite like that

Yet I instinctively knew that it was a ‘panic attack’

I grew up seeing my father have them

Almost daily

The knowledge didn’t help not comfort me

Somehow I made it through that first episode

I can’t really say how

And all these years later

And that tattoo

Of that little fist clenched in a show of power

Is still bumpy to the touch

Like a warning of the struggle up ahead

But I’d rather think of it as a tangible road map of what I’ve been through

And survived

Nobody told me

Nobody told me ten years ago

In the middle of a crisis of my mind

That the miracle pill I was being prescribed

That the pill which was so hard getting used to

Would be worse to get off of

Would be compared to heroin to withdraw from

I’m on 40 mg of Paxil and have pretty much been on that dosage for the last ten years

I’m pretty sure that for the last 5plus years that my continuing to take it, does little else but keep me from getting sick

A year ago a psychiatrist recommended I wean off of it and try something else

I panicked

I never went back

I know it’s the right thing to do of course

I know my anxiety won out

Despite that I’ve been able to get a really firm handle on managing my anxiety disorder

Certain situations make the anxious thoughts and sensations come back with a vengeance

The flu

Being intoxicated

Certain medications and side effects

And the thought of weaning off Paxil

Not because I’m a firm believer in the drug

But because I am so fucking scared of losing myself again

It was so awful once upon a time to be afraid of my mind

To be afraid to be alone with my thoughts

To not trust myself

And yeah the Paxil isn’t improving my mood

But I feel like me

Granted a heavier sweatier me

But that’s a small price to pay for peace of mind

Literally

But I went back to the aforementioned doctor yesterday

And explained why he never saw me again and my fear of the withdrawal process

When voicing these concerns, he recommended contacting a Compounding pharmacy

The compounding pharmacy can create capsules that would allow me to reduce Paxil in smaller increments

Say for example by the rule of 10% drop, so 4 mg at a time

Maybe for a week or two

The process will take longer but the goal is to minimize the negative side effects associated with Paxil withdrawal

I contacted some compounding pharmacies and they can do that

For a cost of course

But peace of mind you know…

I am supposed to call the doctor and let him know what I have found and decided

But instead I obsessed and allowed my anxious thoughts to run wild

With all the what if’s and worse case scenarios

So here I am now 24 hours after seeing the doctor

I’ve had to take an addition Ativan to blanket my anxiety

I’ve made no concrete decision

And as long as I continue to avoid the decision

My anxiety will remain at bay

And I know that’s not an answer

Just another avoidance

And I’ll tell myself it’s for the best

And my anxiety-addled brain will believe me

Until…

In the chaos of moving and health shit, life keeps throwing curveballs my way.

<Below is response to my employers email demanding I complete the medical documentation regardless of being on a leave (that they not ‘properly authorized’ and with treatment approaching which will hopefully change my physical health>

Hello Employer,

Thank you for your email. I am  seeing my doctor on Thursday and will request that he fill out the forms. However I would like to note that I feel that having him complete the forms when I am obviously currently unfit to work is a waste of time. As of right now he has clearly indicated that I am not medically able to work. So any medical documentation done right now will be inconsequential and disregards the purpose of my treatment which is to get better. Regardless of my personal opinion and his professional one, I will ask that he fill out the paperwork again.

As EMPLOYER have been aware of since last year, I have treatment coming up very soon and it has been insensitive and has showed a lack of compassion in demanding that I do this before my treatment has occurred. EMPLOYER has repeatedly reminded me of my contractual obligation while showing no insight to the obvious difficulty that a long time employee of EMPLOYER is undergoing, while attempting to embark on a second round of chemotherapeutic treatment for the sole purpose of improving their physical health. The forms EMPLOYER have demanded ask questions that show no clear understanding of what Multiple Sclerosis is and how it affects its sufferers. 

I had hoped that an agency I loved working for and hoped to continue to work for a long time would have showed me more compassion and empathy instead of making me feel like a burden and drain on their resources. At this time all I can say is I’m disappointed with EMPLOYER, which as far as a contract goes, I understand means nothing. I have learned my worth as a result of having several years of experience in this field and as such have a thicker skin than most, however I hope in the future EMPLOYER can show its employees more understanding and sensitivity than it has shown me, because having a chronic and incurable illness is hard enough. Once again, I will request my doctor complete the forms EMPLOYER is asking for. 

Angela Gagliardi

Day 3 of 3 (belated) Quote Challenge

Things have been super busy and I missed doing this yesterday. So here it goes.

This quote is a little different for me. As you may know by now I have a penchant for the darker quotes and while this one isn’t light and fluffy it’s definitely different. It evokes many memories for me. This was something from my childhood, hung in my family home and now hangs in my own. This quote reminds me of my grandmother, mother, superstition, culture and folklore. Things I love.

This loosely translates to ‘May whoever wishes bad on this house, drop dead before they enter’.

My family is big on superstition. And we have something in our culture called the ‘malocchio’ which means ‘evil eye’. It is believed that people who have an evil eye can cast a curse on you as a result of their jealousy or envy. Sometimes it is malicious and sometimes not, but the person cursed can become physically ill. There is a prayer that can take the curse away, learned once a year on Xmas eve by someone who already practices it. There’s also a whole espresso cup thing filled with water and oil droplets. I’ve said too much. 😬

I don’t know if I believe in it but I still call my ma to remove the ‘malocchio’ from me on the regular. You know, just in case.

Corni benedica folks

Day 2 of 3 Quote challenge

Amidst the chaos of moving I almost forgot to post my quote for Day 2.

I’m not gonna nominate any more people cause I’m a rebel like that (read lazy).

This quote is hauntingly beautiful isn’t it? It’s no big surprise that I see myself as ‘broken’ and Hemingway helps me see it as not just a negative thing. Of course being broken isn’t ideal and I would have loved a different life but this quote makes me see the beauty in it. With all the cracks in my armour, the light flows in and it allows me to be the sensitive and empathetic person that I am. There may be parts of me that are damaged but there’s beauty in there too and that’s from the light shining in.