Someone Like Me

One more day to go

Tomorrow is my first day of Round 2 Lemtrada treatment

Today is my prep day

I am prepping meals and snacks for the infusion days

And dinner meals for the week

I need to take the dreaded Prednisone this afternoon to help my body get ready for the infusion

I have a roster of family coming with me on each of the three days

I feel ready

More than that

I want it to be done already

It’s kind of like putting your life on hold for a minimum for one year

With the possibility of extending that

This year has not been kind to me

And I’ve had difficulty in dealing with everything from work to my health to my finances and personal life

What doesn’t kill you…right?

Having said that I do feel better prepared for around 2

I know what to expect and what not to expect

And I now know that nothing good ever comes without sacrifice

So if it means another year of my life on hold to make the next several years hopefully better…

So be it

I have discovered I am the type of person who needs something to look forward to

A purpose

A goal

A reward

I find it motivating and challenging and I like overcoming challenges

I thought it would be helpful to me if I made up a list of things I am looking forward to

It makes this more tangible

And it makes this feel worth it

Here goes:

  • I want to go to Salem for Halloween this October
  • I want to go to a beach somewhere this summer (sorry Ontario, with an ocean)
  • I want to plan a trip to a place I’ve never been like Ireland or Portugal within the next 6-9 months
  • I want to find a job where I feel valued and where I feel like I’m doing something goodI want to become reacquainted with the city I love by exploring different neighbourhoods or rediscovering old neighbourhoods
  • I want to take up photography as a hobby and incorporate that into this blog
  • I want to make this blog into something…more
  • I want to see and spend time with the people I love and who make me smileI want to spend my nights sharing stories with J. where we can laugh and look forward to the future that is open for usI want to make my body and mind healthy for the first timeI want to remove unhealthy toxins from my life and body (looking atcha Paxil
  • I want to get a tattoo to immortalize this experience as is the biggest challenge I’ve ever faced

And this last one, is probably the most difficult and simultaneously the most important one to me.

  • I want to feel at peace in my soul. In my mind and in my body. I don’t expect happiness 24/7 but I want to know that it is attainable even for someone like me…

Why bother trying to write something when someone else has already written it so much more succinctly than I could ever imagine.

I don’t have any words other than this article is everything I’ve thought myself, too many times to count…

https://themighty.com/2018/04/chronic-illness-struggles/?utm_source=engagement_bar&utm_campaign=post_feed.story_card_full.mobile_fixed_engagement_bar&utm_medium=link

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

🤞🤞🤞

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

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 1 of 3 Quote Challenge

Thanks to the lovely Alyssa for her nomination. She has similar struggles as I do but yet seems to handle the challenges with a grace most could only dream to possess. Read more at Alyssa’s blog

I imagine anyone who knows me knows how much I love words, lyrics, poems, books etc and I could seriously cover my entire body in the quotes that have made me feel something and not regret one line.

My first quote is attributed to Robert Frost.

Excuse the bubble bath on the last word. 😬

What I love about this quote is that it says so much without revealing a single thing. You can feel how much the author has been through. How much life has thrown at him. And that at the end of the day, the thing you can really take away from life’s alleged lessons, is that it continues. The world keeps spinning, people keep moving. There’s something so comforting in that knowledge.

I’d like to nominate the following three bloggers to take part in the quote challenge:

Steve who motivates and inspires me to continue to write. He’s even written a book! Check out Steve’s blog

Second blogger nomination is Caz. Caz is supportive, encouraging and knows too well the struggles of a warrior. She writes about real life. Read her blog at Caz’s blog

Last but certainly not least is Jay-lyn, whose writing conjures up powerful images and is a fellow warr;or. Read her words at Jay-lyn’s blog.

‘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…

Worlds Worst Employee

Chronic absenteeism

Those words keep repeating in my head

Sick days

Can’t get out of bed days

Anxious days

On and on

I can’t even use Multiple Sclerosis as an excuse

It started way before that

Somewhere in between my first real job in the industry and getting married

There were so many bad days

I wish I could say I know why it all happened

I didn’t know then and I don’t know now

It’s embarrassing when a supervisor calls you into their office to talk about your frequent absences and not the quality of your work

I can’t remember what I disclosed then

I was naive and thought people in positions of power cared

Especially in a field such as mine

But chronic absenteeism isn’t forgivable even in the best circumstances

I found that out quickly

I had a boss once who understood me

I can’t say enough about her

She didn’t judge me or make me feel less than

But then she was replaced

And when she moved on, she left a note for the next person in charge advising them to overlook the absences because in her words I was ‘worth it’

It got worse after I was diagnosed with MS

The chronic absenteeism, that is

I had a few supervisors that tried to understand

Or maybe they just overlooked it because they too thought I was ‘worth it’

That’s my wish

But I don’t know and can’t speculate on the why

There were some uncomfortable conversations where I hung my head with guilt and embarrassment weeping from my pores and tried to explain my life

In words that didn’t sound like excuses

Even though I’m sure that’s how they sounded

I know they did

Because my own ears heard it that way as well

Here I am now

10 years post finding out struggling with mental illness isn’t a valid reason for missing work

5 years post learning that adding MS to that equation doesn’t add up to stellar employee record

Decades after my father stopped working for similar reasons

Now at 36 years old I’ve built up a track record that includes words like ‘chronic absenteeism’ coupled with sentences like ‘when she’s there, man she’s good’

Where does that leave me?

With an ultimatum of having my doctor evaluate me and my frequent absences and ask for a modified work schedule which would likely lead to my relocation to another program (if possible)

Or quitting/going on long term disability like my father did so many years before me

Tackling the latter; quitting would leave me in a precarious financial situation

Going on long term disability would mean I’m off of work at 36 years old with a brain that doesn’t do well left to its own devices

Trust me, I’ve seen what it did to my father

The alternative is going to my doctor with forms and chronic absenteeism on my tongue

And that would leave me in a state of limbo

Where my fate is left in the hands of an employer that I have lost all faith in

For them to decide if they can accommodate me

Really for them to decide if I’m worth accommodating

Or to find another program to stick me in

Like a dirty little secret

Where the powers that be will dump me onto the unsuspecting supervisor

I wonder what their track record included for them to have gotten stuck with the likes of me;

The Worlds Worst Employee

Somewhat Damaged

Feels like all I ever say is I’m sorry

I should just write them out like lines I used to do in school

And then tape the words over my mouth

Or throw them in the trash

For all the good they’ve ever done for me

I’m exhausted of the emails, the appointments and the alarms I can’t get out of bed for

I’m tired of trying to pretend

To fake it till I make it

To paste a smile on my face

It’s not for me anyway

I’ve never been so skilled at make believe that i could dupe myself

It’s for your comfort

And his

And hers

And it makes me feel worse

I don’t want to care what anyone thinks

I don’t want to see the judgemental looks

I don’t want to hear the accusatory tones or the false sympathies

Yet It’s all my brain can process

Everything has become so fake it smells like my grandmothers plastic couches

Or so bleak it’s like I’m trapped in a dark closet with no light bulb and no way out

I want to shut off my brain

My somewhat damaged brain

This brain of mine

What good has it ever done me?

Filled with anxious thoughts that I couldn’t get rid of

Then so much sadness it was drowning in a sea of it

Then lesions that *poof just appeared one day

And I’m supposed to find a silver lining in this?

Since I’m so skilled at apologizing…

Here goes nothing:

I’m sorry that my lining must be covered by so much shit that I can’t fucking see it

Maybe I misplaced it along the way

For what it’s worth I’m sorry that I lost it

I’m sorry that I lost that silver fucking lining that would make all of this bearable

I’m sorry that I can’t find the silver lining that would give all of this shit a deeper meaning

I’m sorry that I can see everyone else’s silver lining

I’m sorry that maybe some people are just born without the ability to see their silver lining

And I’m so fucking sorry that mine seems to be missing

Or maybe it’s somewhat damaged

And wouldn’t that be a perfect kind of irony?

(An angry playlist to go with an angry mood)

When it rains, it pours. Oh the irony

Letter from HR to my union. My notes in italicized bold type

‘Please note, Angela has since put in a request for a medical leave of absence, beginning May 1, 2018 for one or two months. We will need to address this request separately.

(And yet here it is)

1. What is your specific concern with regards to staffing the program?

This program is designed to provide in classroom support for the students and the staff. That requires that a staff person is available for the entirety of the time in class for the days on which class is scheduled. In other words our employee schedule is depending on the school calendar and timelines. In short, 5 days a week/for any days the school is open. Holiday, vacation and other time off are to be scheduled in accordance with the school calendar, as outlined in our Policies and Procedures.

When an employee is unable to attend class 5 days a week, employer has an on call roster of employees that can fill in on short notice, however, this backup process is intended to manage one off absences, not a continuous number of them.

In Angela’s case, as you will see, her absenteeism has resulted in a significant drain on our on call roster resources.

(There has been no coverage for the bulk of this year so how could their possibly be a drain on resources?)

2. What particularly has the impact been on the program on account of Angela’s absences?

The impact of Angela’s significant absenteeism has been many. On the front end there has been the impact as described above on the drain on our limited on call resources to fill the day in the event of an absence. Secondly, the point of the program is to provide on-site support to the staff at the school and to support and provide monitoring to the students in the program. Absenteeism means that the on-site support to the staff and the student support and monitoring don’t happen, leaving the on-site staff with more to manage, when coverage is not available, putting a strain on school resources as well.

Additionally, as the Counsellor for this program, Angela is expected to develop a rapport and relationship with the students and their family on-site in the school environment. If she is not able to be in class regularly it is difficult to establish, develop and maintain solid relationships. Finally, we have been approached by the school and program supervisors, clearly indicating that her absenteeism has been a strain in their staff and the program and cannot continue.

If employer cannot manage the situation, we could potentially be at risk of losing the program, and the funding, resulting in layoffs.

(I’ve been repeatedly told by my direct supervisor and collaterals that my ability to build rapport and engagement with these youth is superior bar none. That seems very contradictory given the above statements. Furthermore could it be that school admin is upset as a result of being notified about my absences when they have never been in the past?)

4. You’ve remarked on Angela’s level of absence from work over the past two years, yet there has been no acknowledgment from you of the fact that she was on a modified work schedule during most of that time; please substantiate these statements you have made with detailed analysis of absences for the last two years, as we would like to see a comprehensive listing please.

I have appended a summary of Angela’s attendance records for 2016, 2017, and 2018, plus some brief notes on her reduced work for 2015.

You will note that even when on an accommodated reduced hours work schedule, which we acknowledged, Angela has demonstrated that she has not been able to attend work for 5 days a week with any consistency, such as to address the issues that have arisen as a result of the significant amount of time off.

I trust this provides sufficient background and information to understand our position requesting medical as it relates to Angela’s ability to attend work 5 days a week to meet the requirements of the program.

(‘Even while on a accommodated work schedule Angela has demonstrated that she has not been able to attend work for 5 days a week’ . Does anyone else see the pure ridiculousness of this comment? As that would have been the point of needing the accommodation no???)

 

I look forward to your response and the medical that has been requested.’

What an awesome and unusual way to hit me while I’m down. 👍🏼

And I feel super supported not at all stressed, embarrassed and I definitely don’t feel like this is contributing to my extraordinarily shitty health at the moment!! Thanks!