‘There Are Moments That Mark Your Life. Moments When You Realize Nothing Will Ever Be The Same. And Time Is Divided Into Two Parts – Before This and After This.’ Nicholas Kazan (Fallen)

I had an a-ha moment today in my support group. We were on the first step which is:
1. We admitted to ourselves that we are powerless over our disease. That our lives had become unmanageable.
I got to go last…which meant I got to listen to 3 MS veterans. All having been diagnosed more than 15 years ago.
One spoke of feeling comfortable in being alone on Xmas day.
Someone else spoke of being okay with their sometimes self-imposed isolation. Another spoke of being aware of their limitations, without being self-deprecating.
I sat back and listened.
One in a wheelchair.
One in a scooter.
One with cognitive symptoms.
And I felt envious.
Of them.
Me,with my mostly mobile body.
Me, with my mostly cognitive functioning brain.
I felt jealous of each of them.
I felt jealous of the comfort and grace each of them had come to possess upon accepting their illness.
I sat there and reflected over the last 6 years since diagnosis.
The ups and so so many downs.
The relapses.
The symptoms.
The steroids.
Treatments.
Injections.
Sleepless nights.
Crying fits.
Raging fits.
Anxiety.
So much fucking anxiety.
All of it, having led me to this moment.
Waiting for my turn to talk in a 12 step support group.
Their eyes looked to me.
My turn.
I looked around the table.
Less than a year ago, they were nothing more than three strangers. People I would have passed on the street, without a second glance.
Now we share this inexplicable bond.
This illness we all have.
Referred to often as the ‘snowflake’ disease, since symptoms vary so much from person to person.
These three people who now know more about my feelings and thoughts than most of the people in my more immediate circle. These strangers not so different from this lifelong outsider, after all.
I told them I thought that I had accepted having MS.
6 years ago. I heard the words coming out of my Doctor’s mouth and thought to myself ‘okay….so now I have MS.’
I thought that was enough.
I thought that meant I had accepted it.
But it wasn’t until that very minute that I realized, I would never be able to accept MS, until I had also accepted the negative impact its had on my life.
That meant accepting the change in my job status.
The permanent damage to my eyes.
The toll all of it has taken on my already fragile mental state.
Taking all of that in…and still being able to say that while I won’t succumb to it, I have come to terms with having MS in my life. That I’m OKAY with it.
I’m not there…
Not even close.
But I found hope in looking around me.
Which for someone as chronically hopeless as myself, is a fucking lifeline.

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‘Pride Comes Before The Fall’

I like spooky things like Halloween in Salem

And even though I don’t really consider myself a ‘believer’, I like going to psychics and mediums

While in Salem for Halloween and on a boat cruise, I had a free reading done

I sat down and after shaking hands and making introductions

He motioned to a pin on my jacket of a broken heart stitched together

He said it represented me well

I’d been broken hearted

Not by love in the traditional sense

But by the world

I laughed a little nervously and my curiosity was piqued

It was a short reading and I can’t stop thinking about something he said during it

He told me that I always felt like I didn’t fit in

He said that maybe that was okay though

Because some people aren’t meant to fit in

Some people are meant to make a difference

He said that in my work I was trying to make a difference for people

That I’m a healer and a powerful empath

I can’t stop tracing those words in my mind

I continue to think about it and where that leaves me

Which is apparently on long term disability (after finally being accepted a month ago)

In that time period, I feel like I should be doing something

Only I don’t know what

This isn’t new though

I’ve never been someone who had a clear path or knew what they wanted to do from a young age

I went to several different schools and tried on different hats

The only one that fit reasonably well was the last one I wore

Working with youth

I knew even though

That it wasn’t the perfect fit

The school restrictions, the politics, the employer

But it was so close

And then in the blink of an eye

Like things in my life so often do

It didn’t feel right anymore

My direction was blurred

Just like my vision

I only knew I couldn’t go on like that

And it had nothing to do with the youth

It had everything to do with how others made me feel like I wasn’t doing good enough

My pride was so deeply wounded

That I can feel it

Like rubbing salt on fresh wounds

Just thinking about my job, those kids, that work, those people, that job

And I feel it all over again

Every single burn

All the pain

Pride is funny like that

It’s with you during some of your happiest moments and accomplishments

It can carry you through some of the toughest times

And then bury you just as easily

‘The Two Most Important Days Are The Day You Are Born And The Day You Find Out Why.’ Mark Twain

I was thinking how these last few weeks (months?) have consisted of me trying not to feel sorry for myself

Yet I have been failing terribly at that

Then I got a call from a former client

Who had been out of touch for a long while and had me very worried for his well-being and safety

He’s doing great and is being taken care of for the first time in a long while

Which he deserves

He sounded so…healthy

You’re probably thinking ‘how can she tell that via phone?’

After spending inordinate amounts of time with my clients

I know them like the backs of my hands

I know their painful stories as much as I can recollect my own

I cherish their achievements probably more than I do my own

And I can tell when they’ve changed

So seldom do we hear about change for the better

But this is one of those stories

Gone was that drugged-out-to-escape-reality voice

Absent was that voice that carried so much self deprecation and sadness

Instead

I heard notes of pride, happiness and the thrill of looking forward to a promising future

All the things we hope that s young person can feel

I hung up with him, feeling lighter than I have in a long while

It got me to thinking why these last few months, out of all my 36 years, have been so difficult

So full of me trying and failing to not feel sorry for myself

Full of heartache and sadness

I stumbled into realizing that I feel lost

Feeling lost looks a lot like not knowing what your place is in the world, in your family, in your career and etc

The opposite of lost is of course ‘found’

Which is defined as:

to discover, especially where a thing or person is, either unexpectedly or by searching’

So that brings me to this…

Do you believe we all have a purpose?

And what is purpose anyway?

It is defined as:

the reason for which something is done or created or for which something exists.’

So my question really is, what are the reasons each of us are here?

I don’t think of this in terms of fantastic elements like destiny or fate

More so as each of us has the power within ourselves to reach our full potential

Which in turn then meets a ‘need’

This therein becomes our purpose

However, we often fall short of reaching our full potential

Which could be a result of a myriad of reasons (none of which are pertinent right now)

Over the last several months I have learned that I am a person who needs to have a purpose

In order to feel happy

It’s just the way it is

I can’t exist in life in any less of a way

Maybe it would make my life easier if I could

In fact, I’m sure of it

But nobody ever said it would be easy, right?

I’m pretty sure that me reaching my full potential has to do with helping others

Through work

Through sharing my experiences

The method isn’t important at this moment

I guess what is important right now

Is that I need to figure out what will allow me to feel like I’m fulfilling my purpose in life

While accepting that I do obviously have some limitations

Because at the end of the day

I just need to feel like all of this

All of the pain, sadness, difficulties

All of it

Wasn’t for nothing

You know?

‘…In A World Of Ordinary Mortals, You Are A Wonder Woman.’ Queen Hippolyta (Wonder Woman’s Mom)

Struggling to get through today

Hour by hour

Minute by minute

Each second more excruciating than the last

Skin crawling

Head pounding

Eyes straining

This is the part in the movie where the poor guy reaches for his drug of choice

Where the sad woman guzzles her beloved bottle

It’s the climax in a novel

Where emotions soar to dizzying heights

Where nothing can possibly survive at such intensity

Like a car reaching peak speed

Like an addict reaching the height of their high

The moment is suspended in time

When the audience knows a turning point is coming

Watching for the pivotal scene in which the hero sheds his old skin

Where the heroine finally emerges

That’s what happens in movies and books

In real time nothing is ever quite so profound

The moment goes on and on

Stretching uncomfortably long

The hero remains sheathed in weary skin

The heroine hides in her shadows

There’s no audience waiting with bated breath

Rooting for the breakthrough moment

Instead

There’s only a woman looking at herself through a mirror

Waiting

Watching

Begging for a glimpse of the heroine to change the narrative of this story

From another unhappy ending

To one in which she finally gains her superpowers

Project Take Down Paxil 👊

I feel like I should apologize for being MIA lately

But I’m not really sorry

Because it’s for a good reason

It’s for me

Last Wednesday I dropped my Paxil dosage from 40mg to 30mg

I won’t pretend I was totally cool with it

I had a lot of reservations

But I also really wanted to do it

There were some shitty days obviously

Two days when my anxiety spiked to an uncomfortable level and I needed to take more Ativan

Several days where I had dizzy spells that came and went

But I survived

I can tell the following things helped:

Writing affirmations daily

Trying to stay busy

Doing a lot of introspection over the root of my anxiety

Now today I went down to 20mg

Last nite I was really starting to psych myself out of doing this

I kept thinking ‘woah 20 is a big drop from 40’

Then J. reminded me that I was going from 40mg to 20mg

I’ve been on 30mg and am stable there

Now I’m dropping 10mg again

Which I successfully did last week

I needed to hear that

It helped ease my fear

I made him write it out so I could print it

I’ve already reread it a few times

Along with some other affirmations

I need to keep reminding myself that I’ve already dropped 10mg and while unpleasant

I survived it

I’m still safe

I’m still here

And most of all

If I did it once

I CAN most certainly do it again

Changing the narrative helps

Taking the unknown and making it something familiar

Removes the fear

For anyone else out there struggling with anxiety

If I’ve got this

You’ve got this

Hard and uncomfortable as it is

We have what makes people into warriors

I’m going to remember all of the difficult things I’ve been through in my life

I’m scrappy

I am a fighter

Think of everything you’ve survived

I hope you keep fighting

Because I will too

That’s what warriors do

Here we go…again

After much deliberation

And talking with my doctor and psychiatrist

I’ve decided to try getting off the Paxil again

Although the first time didn’t go so well

I both want and need to do this

I’ve made a list of reasons why I need to do it

I won’t bore you with the details

I’m gonna try again

Differently

I’ll be tapering by 10mg a week

With the possibility of taking up to 4-5 Ativan a day if necessary

While part of me thinks this would be easy if I take all the Ativan

I know that it’ll be one more thing to wean myself from

So for now

They will stay be on my side

There if I need them

I’m trying a few other things

Like trying to be active and busier with other things

Physically and mentally

I’m also trying to go into this with a different mindset

I’m trying to remind myself this time around that I’ve faced many many challenges in my life

Some uncomfortable

Unpleasant

Painful

And I’ve survived

I hope one day this will be another thing I can add to my list of things that I survived

Wish me luck 🤞

‘I’m afraid to be alone with my own mind’ -Sylvia Plath

Here goes…Everything

The compounding pharmacy has made the Paxil capsules for me

I picked them up yesterday

I will be decreasing by 4mg every two weeks

My dose was 40mg

Last night I felt really anxious

I keep thinking about how shitty I felt going on Paxil

I keep thinking about not being in control

I keep thinking about panic attacks

I’m trying to think about the benefits

Maybe I can lose the weight that Paxil helped me gain

Maybe I can stop sweating in the middle of an emergency cold alert day

And yet somehow

Those benefits just don’t stick in my brain

My brain that has been sponsored by Paxil for over 10 years

It’s not that I’m connected to Paxil

It’s not that I think Paxil has helped me

It’s solely the fear that is controlling me right now

The same fear that always controls me

That no amount of therapy or meds has ever really been able to free me from

I want to do things in life

That I do because I want to do them

And not because fear has made me choose them as safer options

And not because fear has made me avoid other things

Fear

In some ways I think this has always been my biggest challenge

Probably from a young age

Seeing my dad experience panic attacks

Seeing him not feel like he was in control

Therefore not feeling safe in someways

As I’ve gotten older

That control has gotten more important for me

And I need to hold it firmly in my hands

I need to hold it because if I don’t

The world will fall apart?

I need to hold t because if I don’t

I will fall apart?

I need to hold it because if I don’t

I won’t feel safe?

Sometimes I curse the level of self awareness I have

Sometimes it does nothing more than get me stuck in a thought

When instead I should be in motion

I know what is right for me

I know what I want to do

I just need whatever part of me that is holding onto that fear to catch the fuck up

But today

The warrior woke up first

And warriors aren’t afraid

I still don’t know what’s on the other side

But I took the leap

I’ve started the tapering

Let’s hope the scaredy cat version of me is not the one that wins

Let’s hope that this warrior side of me has grown strong enough to finally

Finally take back what is rightfully mine

My life