I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe

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On the 5th, 6th and probably 7th day, She rested

It’s a rare time when I don’t lay in bed tossing and turning thinking things over

Like why my first grade teacher said I was too quiet

Or why I have a phobia of blood

But this week has been different

I fall into these really deep sleeps where I wake up feeling like my body is being regenerated

No single thought is tossed around in my brain for an unnecessary amount of time

It’s kind of an awesome feeling

It makes me feel refreshed

I’ve had some negative side effects mostly from the steroids

And steroids?!

God damn!!

I swear the way they can make the most mundane food taste gourmet is amazing 😍

And there is NO hunger like a steroid hunger 🐷

But mostly manageable through medications

I keep trying to remind myself that it’s totally okay if all I did today was shower or sleep

Then my mind tries to tell me that it’s not normal to sleep all day

But when the hell has my mind ever been right anyway?

And when have I ever cared about things being normal?

🙌🏼✊🏼✌️🤞

‘Piglet noticed that even though he had a very small heart, it could carry a rather large amount of Gratitude.’

While I can’t say for certain one way or another where the storm of powerful emotions is coming from

Is it the high dose steroids, the cocktail combo of everything else and now the drastic withdrawal?

A culmination of the last several months, much of which was unpleasant at best?

I guess it doesn’t even matter

What does matter, is that like Piglet, I’ve noticed that my heart can carry an enormous amount of gratitude

And I don’t think gratitude is meant to kept bottled up. It’s like having a present and never giving it to the intended recipient.

I want to lay out some honest gratitudes in a way that doesn’t trivialize then into mere platitudes So bear with me while I navigate these murky waters

In can be hard for people drowning to see the good, the things to be grateful for

But I’m going to try

I am grateful for:

  • My partner in crime. Through thick and thin. Sick and sicker. Depressed and anxious. I know I could live without you if I had to, but what a sad sad life it would be.
  • My mom, mother in law and sister for each taking time out of their days to spend a day at the infusion clinic. Mainly being my go getters and entertainment and in Connie’s case, my calm. You each played such an important role in this infusion week. I am forever grateful.
  • My friends, my family especially my dad who wrote a sweet note for me every day on Facebook and even called me Bella 😭
  • I am so warmed and surprised by how many people reached out through a text, a visit, a phone call, a message or a line on some social media platform. Going through any hard time is always made easier when there are people who for whatever reason show their support in whatever way they want and can.
  • I am grateful for each of my three nurses who took wonderful care of me even knowing they’d likely not see me again. They were kind, understanding and never brushed off any of my feelings or symptoms.
  • I am honoured to have spent my time with all my fellow fighters and warriors (of the MS variety or not). I wish there was a collective magic pot where we could each leave a small amount of whatever it is that makes us fight so that when one of us is running on empty, they can dip into the reserves. So much of our fight is done behind closed doors, in beds and in darkened rooms, and I hope that more of us can find the courage to join this crazy fight together.
  • Finally I am sooo happy to have a family doctor who could send a script to my pharmacy for some good sleeping pills, and you dear readers should be happy too. Because no sleep and high dose steroid withdrawals makes for an extra less than amiable Angela.

And who in their right mind would want that?

🙌🏼✌️✊🏼🤞

No pain

Been in bed for a few hours and feeling drained to the bone but I wanted to jot some notes down.

Today was day 3 of Round 2 and the end of the treatment cycle. Hoping I will be among the many who haven’t needed a third cycle.

Today was comparatively easier than the last two days and had my awesome zen and calm sister by my side today who was a super caretaker.

I had one major spike with blood pressure where it went up to 160something over 111. But managed to make its way back into safer territory.

I was nicely drugged up for most of the morning into the early afternoon and felt little more than the Sahara desert of dry mouth and throat.

While doing my infusion I met a fellow MSer who was getting Tysabri treatment (which I was ineligible for due to previous exposure to a virus). This Misfit of a warrior has been battling MS since she was 17 and has been through her hurdle of using a walker and I’m sure much more but has since done well with Tysabri. Wishing her and everyone else on this weird fucked up ride of MS, nothing but strength, courage and good vibes.

My nurse Christine today was excellent as were the other two and I even got to see Nurse Amanda who rocks!

I hope this made some sense as I’m pretty doped up at the moment. 🤤

I won’t even begin to describe how many pics had to be taken of me throwing up the round 2 day 3 hands. I just couldn’t get it right! You’re welcome world!

But I just wanted to say I fucking did it! I did it! I can’t believe I did it and yet here I am with the bruises and soreness to prove it.

All of you in real life and in the cyber world have made my journey somehow a little easier, a little less lonely and have given me a whole lot of support. Much love and respect to you all.

Although there is a slight possibility that this may be the drugs speaking or just allowing me to be more honest, either way take it while you can. 😂

Day 3 has made for an achey, tired and woozy little warrior.

Who is off to bed in hopes of deep blissed out sleep and with whispers of hope on her tongue for a better tomorrow.

🙌🏼✊🏼🤞✌️

“In the midst of winter, I found there was, within me, an invincible summer’ -A.C

Round 2, Day 1 Down of Lemtrada treatment

The day got off to a rocky start as I woke up at the crack of my ass (aka 4am)

After taking the dose of Prednisone, I started experiencing intense leg cramps or spasms

Aside from that, Joey was my first guest to join me today and we headed out to the clinic around 745AM

I was disappointed to find that Sharmela was off on mat leave but was sooo grateful to have the awesome Amanda in her place

Amanda was a straight shooter and her calm demeanour aided my own to chill the fuck out

There were a few glitches in the beginning with a faulty line in that just spurted some fluid and has left a grotesque and slightly painful bump on my hand

Second shot went in fine

Did the usual Solumedrol dose

Yippee more steroids

And then an hour later onto Lemtrada which is delivered intravenously over 4 hours

Lunch was a tough sell and my appetite was wonky at best

There were a few scares

Namely my high blood pressure and accelerated heart beat

And the muscle cramping in my legs was at some points unbearable

But my good nurse doped me up and got me through it

We stayed for the roughly 2 hour observation time afterwards to ensure no major reactions occur

And thankfully they didn’t

Amanda wrapped me up and left the port in for easy access (😬) tomorrow morning

But all I feel is like the warrior I am wrapped up and ready for more battle

We got home around 530PM this evening

It was a long ass day and we were both proud of ourselves for having pre made dinners to be heated up over these next few days

I’ve now eaten a bit more at dinner taken more antivirals and can honestly say I rocked the fucking shit out of this first day

I was tired, cranky and spastic and I still made it through (blood splatters, trapped IV tube blood and all)

Yay fucking me

I want to leap on trees and scale gates and scream so loud that I lose my voice because I discovered something in me

Maybe only a mystery to me

But

I know I can fucking do this

I’m going to take more drugs cause I ain’t no hero and like Samuel L Jackson urges your damn kids to do, I’m gonna take his advice and ‘go the fuck to sleep’

👊✊🏼✌️

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