Hi my name is Angela and it’s been one week since my last infusion…

It’s been up and down

Steroids really fuck with my entire system

Most of the physical side effects have dissipated

Left over is irritability

More so than usual that is

I don’t know how last time around I spent an entire month in isolation

I’m seriously going mad inside

I’ve watched shows, played around with my hair, cleaned, planted some herbs on my terrace and slept

And thought

A lot

I’ve been thinking about what’s next with work, how the kids are doing, if this treatment will work, the upcoming Paxil withdrawal, how they really do get the caramel in the caramilk bar

And the list goes on and on and on

I’m not gonna lie

The Paxil thing has been at the forefront

I have been totally obsessing over it

I’m terrified

But that’s another blog entry altogether

Right now

I’m trying to make it to two weeks post treatment

And then I will rejoin the world

If it’ll still have me of course

Which has always been debatable

At best

Like me

Temperamental

At best

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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…

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 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.