Confused Punishment

Confused punishment was something I had a hard time coping with just a few years ago, whereas now feeling… well.. like Mr.Bean does here. I ignore when not worth it, whereas other days… well… lets just say I can advocate for myself  I am happy and I am free.

Confused Punishment: When you encounter poor treatment/further penalty based on the side effects of treatment/ medication/ physical or emotional stress from a Brain Tumour.

Examples
1. Dirty looks from strangers thinking you are drunk, when out learning to walk again, swerving.
2. Secretaries being personally offended/ blatantly rude if missed appointment, not realizing you forgot to write a reminder not to forget the appointment
3. Judging a RBF in social situations, when you are fighting a anxiety attack off inside
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Seeing this gif. of Mr.Bean instantly makes me smile- admittedly I even giggle like a teenage girl- as it reminds me of my reaction to confused punishment these days. However, it wasn’t always this way.  There were dozens of difficult moments when these instances happened- I guess you can say I have forced myself through this storm by turning my anger into determination. 5 years of determination to convalesce close to 90% makes me proud and strong of the accomplishments made, and-then-some. This wouldn’t be possible to those who have supported me- people like you, who are reading this right now, thank you.

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I cried the entire time.

My soul is tired.

As life would have it, I’ve had some pop up ‘symptoms’ going on within the past year. Starting last summer with occasional and mild, now still present and little more intense. From tiny spurts of leg numbness to blurry/double vision occasionally when reading or late at night, it was obviously time for another MRI to be done.

Today (June 25th) as I sat in the taxi for the 40 minute ride to the hospital for my MRI, I went through my usual mental checklist of MRI expectations/preparations:

  • Get taxi drivers number for when I’m ready to be picked up from the hospital. It will be about an hour. Check.
  • Keep drinking the water you brought to keep hydrated as this keeps the veins nice and big for the contrast injection. Check.
  • Take an Advil to dry up phlegm in throat from a cold I’m almost over, so I don’t cough while keeping head still during the 30 minute MRI. Check.

I know the drill inside out and backwards.

I arrived to the hospital, and registered at the MRI desk as per usual. Filled out the screening form as per usual, every policy and procedure was done and the staff were all friendly, as per usual. Being a “Vet” from 5 years of MRIs, it was as if I knew each step without hesitation,

Left… Left.

Left-Right-Left.

Little did I know, it was going to be by far the worst MRI experience yet. The combination of my emotional “grumpy cat” grumpy catstatus of knowing something is ‘brewing’ within me, and repetitive screening questions had me feeling already annoyed. It’s standard, I know.

No I’ve never worked with metal. Yes I’ve had surgery before. On my head, yes. No pace maker. No implants. No allergies.

My last MRI was a few months ago, but, I know; the staff  still have to ask. Unfortunately between my honest eyes and not-too-impressed RBF- there’s no hiding how I really felt. A simple “No changes” is not accepted.

No I’ve never worked with metal. Yes that is my birthday, yes that’s where I live. No phone right now. Yes that is my birthday. My last name is Nichols. N-I-C-H-O-L-S. Yes, same number…

ThIs Is tHe SoNg ThAt DoEsN’t EnD

I guess in case some crazy a**hole wants to steal my identity and do my MRI for me. It’s 30 min for my head, and 45 min for my spine. Go for it.

After changed into the hospital gown, I had my ear plugs in and laying down cozy with a pillow under my knees. I was given a warm blanket draped over me and head cradled in holder, with the standard hockey-like mask clipped over my face (which was my cue to close my eyes to avoid any feelings of claustrophobia). Emotionless. Piece of cake. Almost ready to go into the machine and start the test, an injection of contrast must be done as per my usual ‘menu’ item. Needles? Pftt, please! No problem… right?

After having a hard time finding a ‘good’ vein, Eyes still closed, I felt some sharp pinches and yelped in pain as it felt like the nurse was digging for gold. Out popped the needle out of my arm. Although I didn’t look, I knew blood was squirting out like a pin prick in a water balloon. I could hear the nurse quickly sprint to the other side of the room as she said she was hurriedly getting sanitary wipes to clean my up what I pictured to look like a CSI murder scene. Remember, I’m wearing ear plugs, my head is in it’s cradle with a mask over top. And my eyes are closed. Note: the nurse was very sweet about it- not her fault. But damn it. Hurry up. Another try was made by a different staff member in my other arm. Didn’t work. A smaller needle needed to be used. I could feel my tear ducts flooding.  Without moving my hands, I grasped the blanket on either side of me for comfort.

There I was, laying down in a hospital gown with my eyes closed, ear plugs in and head in a holder with no movement allowed. The staff were professional and described everything they were doing perfectly, yet still didn’t stop the tears from flowing and my frustration and anger to show.

“HURRY UP!” I barked

After try #3, finally a vein was found in my hand. The 3 staff left the room and then MRI started.

I cried the entire time.

It was 30 minutes of a constant stream going down the sides of my cheeks- I couldn’t help but motionlessly and silently weep. I couldn’t move because of the temperamental MRI scans, and with tears accompanied a stuffy nose making it hard to breathe. It felt like torture, being poked and prodded, having to stay still and take it. Torture.

Horrible.

Once the MRI was completed, I was removed from the MRI tube and the mask was lifted, I slowly sat up and practically melted into myself blubbering

This is bullshit! I’m so tired of this

I shouted. Sobbing.

My soul is so tired! I’m tired of this. I’m tired of suffering!

It was about 15 seconds of me lamenting, blubbering while the staff stood beside me looking bewildered and very uncomfortable. I assured them its not their fault what had happened- that I understand I guess I have bad veins today. It just seemed as though I prepared as best as I could for the MRI which is usually a breeze, yet some force of life’s bully just kept knocking me down.

After a silent taxi ride home, I came home and went straight to bed for a time out.

My soul is tired.

Day By Day. I know.

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Thank you SNAPD Markham!

B-Strong Event Covered in Snapd

In May of this year, I volunteered for the B-Strong! ‘s Walk for Brain Tumour Research event- it was an incredible success, as it was not only fun, but also topped the total amount raised since its start in 2005 to 1.1 Million dollars! Wow! Although volunteered for the event- I confess I strayed from the merch booth a few times to thank everyone for all they did, on behalf of a brain tumour survivor. Even connected with some new friends at the School of Rock in Markham. No, I did not have any involvement in organizing or fundraising.  Click here for the full Snapd Markham Article.

Photo on 2016-06-16 at 5.09 PM

<The wonderful Jo-Ann and John Bolger pictured top right…I’m at the bottom right: incredibly thankful – yet with a touch of guilt as there were a dozen other volunteers that did so much more  than me that day>

The Story of Learning about Lindsay & B-Strong

As Day By Day was freshly published in 2014, I wanted to link arms with foundations and/or fundraiser events which had the same interests as I did: Brain Tumour Research. A Markham  Librarian told me about B-Strong; a local charity which I had no idea that it even existed. Instantly linked with B- Strong,

and get this….

As I learnt more and more about B-Strong and honourable Founder Lindsay Bolger, it was uncanny to learn just how much in common we had. If still alive we’d be the same age.  We are from the same town- same HIGH SCHOOL for 2 years, COLLEGE at different locations…

even SAME ONCOLOGIST.

Yet we never met.

‘The rest is history’….  most notably John & Jo-Anne Bolger (parents of the incredible Lindsay Bolger) are wonderful people, along with close family and friends who have carried on B-Strong. I bet Lindsay is so proud!

This weekend marks 2 years since the first connection with B-Strong, as we first met at the Markham
Village Music Festival when raffled off my guitar to benefit B-Strong and the Markham Arts Council.

Here are some memories from that event <3

2014 MARKHAM VILLAGE MUSIC FESTIVAL

 

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Great souls right here! Rebecca (Markham Arts Council), Kevin Kerr, (EMG Music) and Melissa (Day By Day) @ North Stage

 

Markham Economist Press
And the winner goes to…

All these people mentioned are those who are making the world a better place.

Our community is getting stronger-

Day By Day

 

 

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You’ll never guess what I got!

Check this out!

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It’s a SHWING! SHWING! SHWING-SWING!… 

 

 

 

I mean, Schwinn  😆

Couldn’t help but belt out the Doug and the Slugs’ Day by Day’s song chorus “Day by day I’m feeling strongaaaa, day by day I’m lastin’ longaaa!” the first time I rode around.

Now that I think about it I probably looked pretty creepy as I rode around the neighbourhood with a huge smile on my face- but I don’t care. I had so much fun. I felt like Meg Ryan in the movie City of Angels scene of riding her bike, minus… you know, her demise with the truck. For everyones safety I’m riding on the sidewalk like a badass breaking the law.

Even a week later, am still smiling ear to ear as I ride. Many stare- I don’t know if they are jealous of the bike, think I’m “special” (which I AM, Momma told me so!) or just plain out admiring this 3 wheeled wonder. Regardless, every so often, I tend to yell  things out to onlookers which I think amuses me more than them.

You’re never too young! Wooo…

You called for a taxi right? Hop in the basket!…

Hey! I think your dog wants a ride…

I want to rock it out like the pope-mobile with the plexiglass shell. Put some chains on the tires and install heating to winterize it…. ok… maybe not. Sometimes a pipe dream is just that, He-Manand just fun to think about.

Sometimes it’s hard to ‘keep going’ in this life. That’s why when theres an up in my day I celebrate it full throttle. I’m looking forward to getting in shape, but the Trike represents more – MORE FREEDOM and MORE INDEPENDENCE. I never thought I could ride a bike again because of my balance- but, there you go. Looking forward to next summer- will ride around like Lance and have Heman strength- you’ll see!

Cheers to more freedom and independence in your life, whatever that may be. Celebrate it. No matter how old you get.

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Vulnerability: What does it mean to you?

Have 20 minutes? Watch this.

www.ted.com/talks/brene_brown_on_vulnerability

Brené Brown​’s TED​ talk about vulnerability speaks to the core of my existence- especially at 15:15. Does it speak to you too? I know it will…

This is how sharing vulnerability is viewed:
Self = weakness
Others= courage

Some may notice my contradictory nature when it comes to sharing information, regardless of importance. I don’t care to share the when where who why and how’s of my life- yet can openly show my vulnerability and tell you about the tears, fears and panic of this ongoing health journey. (Vulnerability is talked about in my book Day By Day)

I share vulnerability for 3 reasons:

1) In hopes to INSPIRE/HELP/HUMBLE you
2) To show that a woman can be vulnerable AND strong at the same time.
3) Sharing my vulnerabilities empowers me when it empowers you- during my dark dips I remember the positive things you say/do that brings back up on my feet

 

I hope you enjoy Brené’s TED talk.

 

PS- I’m currently reading her new book- and loving it

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I’m In A Hairy Situation

I know, I know: you had a long day, stressed out, looking to kick your feet up and unwind. Did the little things get to you? Surely some did- we’re human after all…

Please take a minute to celebrate/be thankful for your “1st world problems”.

I was told I wouldn’t have any hair grow back on the top of my head after radiation (1 year ago this month!). However, today I had to go to the store and buy some over-priced hair clips, because, well, have a look how my hair is growing in 😮 . Love this finger-in-a-socket growth.
Take a minute and be thankful for your little inconveniences.

 

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