Still I rise

Ever had that feeling where mid week, usually on a Wednesday, you start to lose steam? You feel your body slowing day and taking longer to respond. Your mind is getting sluggish. And you feel like you just need a really good rest to rejuvenate yourself? That’s what 7.5 months post Round 1 of Lemtrada feels like. My most recent blood test shows that my Lymphocytes are at 1.2, with a normal count being considered 1.0 to 3.0. This is the highest that my levels have been at since treatment. To recap Lymphocytes are white blood cells that help protect you from infection and are referred to as comprising your secondary immune system. So essentially this treatment kills your Lymphocytes in order to rebuild your immune system from a scratch like a reboot for your system in hopes that the cells which trigger MS relapses won’t be present in this new fancy immune system.

The good:

  • My monthly blood tests have all come back clear
  • No infections or serious side effects
  • My vision has NOT gotten worse
  • No taking daily injections

The bad:

  • While my extreme fatigue had faded off around month 3-4, it seems to have come back with a vengeance and I often feel really beat by about 1pm during the day
  • I still fucking hate blood tests
  • Only 4.5 months before Round 2 😱
  • Work has not been as supportive as I would have hoped

The ugly:Although my vision hasn’t gotten worse, a few days ago I experienced numbness in my hand and then in my foot (it has since returned to normal)

  • The MS One to One Program that comes with the Lemtrada treatment at a $180k price tag, has been disappointing. The nurses are supposed to check in with you and send you reminders for blood work. Neither of which have been happening. Not a big deal in the grand scheme of things. But after doing the treatment, understanding the high cost and reading about other people’s positive experiences with the program. It’s left me feeling pretty isolated and on my own. Which I guess isn’t that different from how the average person with MS feels when trying to navigate the healthcare system (along with everything else)

Trying to remember the following:Appreciate the small victories

  • I’m better today than I was a year ago
  • Just breathe

On that note…I still got this<<<<<<<

Advertisements

The power of anger can rage inside until it tears you apart

It’s been an anger fuelled few weeks

It’s not one thing that I can pinpoint

But rather an avalanche of bullshit

I can’t really tell which event triggered the catastrophic movement

I only know that at this point it seems like the load is unbearable and can’t possibly withstand anymore weight

I can feel anger building within me

I can feel the moment where my blood begins to boil

Feel the way it warms my body

Feel the adrenaline racing through my body

Gearing up for a fight

I’ve always likened anger to a pop bottle that continues to build its fury when shaken

And we all know what it happens when the next poor fool opens the bottle

But

What happens the avalanche doesn’t stop?

The fight doesn’t happen?

The pop bottle never gets opened?

The toxicity just stays in the body

It permeates every cell

It ferments

It changes you

It alters who you are

How you see the world

How others relate to you

And this is the fucked up part;

It doesn’t kill you

Instead,

It just slowly ruins you

//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js

(adsbygoogle = window.adsbygoogle || []).push({

google_ad_client: “ca-pub-7526510359972288”,

enable_page_level_ads: true

});

I think I used to have a purpose

Some days I feel so empty

That I’m sure if I looked down I’d have a giant hole in my chest that I could see right through

Some days I feel so sensitive

That it hurts when people simply look at me

Some days I feel so anxious

That my skin somehow doesn’t feel like it fits over my bones

Some days I feel so sad

That watching someone smile makes my heart squeeze and contract

Some days I feel so strong

That I could conquer the world with only my voice

Some days I feel so magnetic

That I can see the moment someone feels the warmth of my attention

Some days my heart feels so full

That I think even the smallest thing can make it burst into a watercolour bouquet

Some days I’m so numb

That I’m pretty sure not even a gun shot would hurt me let alone kill me

Some days I feel so little

That I’m sure my insides must be hollow and barren

Some days I feel so detached

That my movements mimic a robot performing a sterile routine

Some days I just so feel so much like myself

That I feel like I could suffocate and choke on the predictability of it all

And I just don’t understand why

those are the

worst days

of all

//rcm-na.amazon-adsystem.com/e/cm?o=1&p=7&l=ez&f=ifr&linkID=6cc9ce882b92c3b045b4ecee8d54547b&t=fuckms-20&tracking_id=fuckms-20

The only cure for the struggle is to hustle

Not everyone’s hustle is about making money and becoming famous

Some people hustle to survive

To simply exist

In this world

Another day

Another hour

Another minute

Another second

I don’t think there’s anything disingenuous about that sort of hustle

It’s the purest form of self-preservation

I’m a hustler by nature

I work harder with an enemy breathing down my neck

The enemy that both taunts and urges me on

It gives me the power I need

To slay the dragon

To quiet the demons

Always stuck in the same battle

Bearing both the burden that it brings

The crushing weight of it

And the need for self-preservation

Then there is the hustle that’s only for people

With dollar signs in their eyes

You know the ones

Who only do it to make more money

To buy expensive things

To fit into a society

Filled with people

That never cared about them anyway

Every day

Every hour

Every minute

Every second

They end up wearing the dollar bills like flashy suits of armour

And still no one takes notice

Yet somehow we’re both stumbling around

Trying to find a place in a world that still doesn’t feel like either of ours

Both always being our own worst enemy

Launching grenades

Dodging grenades

And never knowing which one will kill you

Because their grenades are fast and powerful

But yours

Always hit their target

And the target is always you

An update: The good, the bad and the ugly

I’m about 7 months post Round 1 of Lemtrada treatment. At this point I can unequivocally state the following:

• I haven’t had a relapse (evidence-No worsening symptoms, no new symptoms)

• My lymphocytes have slowly been replenishing themselves (evidence-I am at 1.0 as of last month around this time)

• I haven’t had any infections or severe side effects (evidence-no emerge visits)

• I have greatly improved my ability to work (evidence-I am working a FULL work week which I haven’t been able to do in years)

• The side effects from the treatment have significantly improved (evidence- fatigue is still a problem and appetite is wonky but I no longer feel like I’m going to…you know die 😬)

• Overall I have more energy than I have had in years (evidence- some days I can actually do stuff after work, at work I can actually keep up with the youths)

• My life hasn’t returned to ‘normal’ (evidence-I’ve been advised to not get tattooed until…) 

• There is a lot of uncertainty (evidence- will I have a relapse? Will the treatment be successful? Will I get one of the ‘bad’ side effects from treatment?)

• I still fucking hate getting blood work done (evidence-I still need to lie down every month while the lab tech draws my blood 😳)


❤️ Angela

What looks like defeat on any given day

de·feat·ed

dəˈfēdəd/

adjective: defeated

having been beaten in a battle or other contest.
“the defeated army”
demoralized and overcome by adversity

    Is it possible to only feel defeated?

    If so 

    Maybe this is it

    I think this is what defeat must feel like 

    I feel tired from simply existing

    My eyes feel strained and they too feel tired

    Even though 

    I’ve been spent more time asleep  today than I’ve spent awake

    It took me hours to prep myself to leave the house

    Lifting my feet to take a step felt like Herculean effort 

    My voice; raspy from under use, is reluctant to leave my throat 

    The excitement I normally feel at this time of year is muted and is buried under several blankets

    I think it’s there somewhere

    But I can’t quite get it to surface 

    That makes me frustrated

    Because I can’t change any of this

    Not really 

    Yeah sure

    I can change my outlook and shout ‘FUCK MS’ at the top of my lungs

    Maybe even alter my mood from time to time 

    But this fucking disease will still be here

    Even with all of the positive vibes I put out into the universe

    It can’t change the science behind MS

    The lesions on my brain will be there no matter how chipper I act

    The myelin will still be damaged no matter how sunny my disposition becomes 

    My fucked up immune system won’t suddenly correct itself even if I smile really big

    And yet

    Somehow 

    I know I haven’t been defeated

    Yet

    I’m still here

    Still tap tap tapping away at my phone

    Writing shit to lighten the load in my brain and on my shoulders

    Maybe it’s only an illusion 

    The long battle I didn’t sign up for

    The battle I didn’t know I’d need to fight every damn day

    Even on the days when I have nothing left to give

    I still show up

    For the illusive battle that feels like it ended

    I don’t know whether I won or lost

    Because I’m stuck wondering why I’m fighting so hard in a battle that just doesn’t feel like mine

    And yet I remember the feeling of defeat so real I can almost touch it 

    With visions of battle and defeat and fighting 

    I crawl back into bed wrapping myself in a warm blanket

    Thinking to myself

    Sometimes a whisper is more powerful than a scream

    So when I close my eyes, I’ll whisper ‘fuck ms’ and hope that the universe is listening 

    Tens years and a lifeline 

    Ten years that we’ve been married 

    It’s been so much longer though hasn’t it?

    Sixteen years together

    It feels like both a lifetime and not enough time 

    I didn’t know then the difference you’d make in my life

    Though I should have 

    Looking back I should have noticed the way the air felt different

    Thicker and somehow more crisp

    How did I miss the way time both stopped and started going by so fast 

    I should have known my life wouldn’t be the same

    I should have known then that only you could make an outsider like me feel unconditionally loved 

    Only you

    I didn’t know because I didn’t think unconditional love was real outside of maybe a parents love for their baby

    Though I should have known better when I met you

    Nothing was the same after that

    Looking back over these years

    We’ve been through so much

    How did we survive it all?

    So many ups and so many downs

    The only constant has been you 

    Exclusively you

    You’ve seen me at my very worst too many times to count 

    And yet you’re still here

    Always just you

    I must have done something so very right to deserve you

    Whatever it was

    I know it wasn’t enough

    I’ll spend my whole life

    Thanking the universe for giving me you

    Only ever you 

    ‘And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.’

    ‘ I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close.’

    The fountain of youth is empty

    I wanna take a break from our regularly scheduled program of all things fuck MS 

    I don’t have any poetic words or sassy comments for this one 

    When I’m not writing crabby and sometimes hopeful blogs, I’m a youth worker in a contained classroom within a high school setting

    I work with up to 8 youth between the ages of 14-18

    While we are open to working with all genders we do tend to have a largely male population 

    The youths that come to us have sometimes been in similar programming before, or have no idea what we offer

    They come from catholic or public schools, from treatment or detention

    They come from single parent families, two parent families, foster care or completely broken homes

    They come from diverse backgrounds and religious affiliations 

    Some of their families were born here while others immigrated to Canada

    The youth come to us with the official purpose of being reintegrated into mainstream schooling one day

    Unofficially

    Well that’s a different story

    They come to us because of negative situations they’ve found themselves in

    At school or in the community

    They come to us from abusive homes or homes where they just don’t matter

    It’s hard to say which is worse 

    So 

    They come to us looking for a place in the world to belong

    Even if it’s just Monday to Friday 

    We try to offer them a soft landing spot

    Where they can stop acting or reacting 

    They can just be

    And lately

    More often than not

    They come to us hungry

    I don’t mean hangry type of hunger

    I mean stomach pains and shrinking stomach type of hunger

    Where they go to sleep hungry and wake up hungry

    And teenage boys

    Well they have a very hard time asking for help

    They are reluctant to admit that there’s no food at home

    Fuck it no young person should ever have to face having no food

    No young person should have to deal with the shame that goes with having no food

    On top of all the other shit that goes on in the life of an adolescent

    Lack of food

    Should not be one of the difficulties they face

    Yet they do

    Everyday

    And we become detectives

    Observing their sallow and dry skin

    The way their jeans hang off of them when they never did before

    If they brought lunch

    Asking questions about breakfast or dinners

    And so

    We take them grocery shopping

    And marvel at their amazement in being able to pick out a cereal

    Not the kiddy sugary kind

    But the oat and nuts one

    That are usually just too expensive and out of their reach 

    We watch as they worry about making us spend too much money

    And try to remove things from the cart

    Things we suggested they get

    We struggle to remind them that we are able to purchase this or that for them

    And we wonder what will happen when they’re no longer with us

    It would be easy to say that the life skills taught will be enough to get them from one negative place in life to a healthier better one

    But that’s not the reality they live in

    It’s not the reality I live in

    So we focus on the now 

    We focus on ensuring that they can get to school when they want to

    That they can eat food when they’re hungry

    That they have toiletries and hygiene products when they need to bathe

    But what happens when they leave our program?

    Who takes care of them then?

    When they’re too old for children’s aid to be involved?

    Maybe society needs to step up

    People often like to pretend that there are no children going hungry in our part of the world

    But that’s an ignorant belief

    Take off the blinders

    People are so quick to point out all the flaws and negative behaviours youth might participate in

    Social commentary on parenting and discipline is ever present

    Everyone expresses their sadness 

    But these youth need more than to know that your heart hurts for them

    I understand that this is not the reality in most people’s worlds

    But just because you didn’t go hungry as a kid or because your kids don’t go hungry now

    Does not mean that there isn’t a young person who hasn’t eaten anything today

    All damn day

    I’m miserable when I skip breakfast

    Or if I didn’t have my morning cup of coffee 

    Please remember these youth year round

    Not just on holidays

    Simply put

    We have got to start doing better for our youth  

    All of us

    Me included

    It takes a village…