A Shared Journal

A Review and a bit more: Brain on Fire

It took me a long time to do this review because it hit me pretty close to home. This post will be a little bit more than a review.

Brain on Fire is a movie based on the true story and book Brain on Fire My Month Of Madness by Susannah Cahalan. She writes her battle with her own mind as she waits for a diagnosis. It is an absolutely compelling story of human strength and resilience and also highlights the flaws in our perception of healthcare for the mind.

Be prepared with a box of tissue because this is a movie we can all relate to. I asked a few of my friends and family to watch it as I felt a little exposed because of all the symptoms she was showing and her struggle to try to tell anyone that something was not right.

I can honestly say that this movie depicts and most accurately describes what my brain goes through before and after seizures and complications from brain damage caused by Multiple Sclerosis. The hardest part to watch in this movie was the confusion and the withdrawal she goes through. I have felt this first hand. It’s a slow decline where I would notice I was “spacing out” and couldn’t focus on my computer screen. To this day when there are a lot of noises and people it can overwhelm me and I literally can’t understand what anyone is saying although they are speaking perfect English. Over stimulation and stress can leave me so confused I become bedridden for days from brain exhaustion. To be so misunderstood as “lazy” “bitchy” etc. my entire life only to find out that my complaints were more than legitimate. The brain damage caused by MS is irreversible and equivalent to a traumatic blow to the head, only nothing externally has happened. Like in the movie, when your own brain is sick and injured it is the worst feeling of loss, confusion and frustration any being can go through. I will also agree with the recovery process. It is a long and ongoing travel to a full recovery and I’ve learned how to adapt to some of my inabilities. I can tell you first hand, it is not easy relearning how to do basic things like walking, writing and learning to trust your own mind even though it has failed me time and time again. I have to tell myself daily who I am, how many kids do I have, who my family members are.

The impact her condition caused on her entire family is also a very difficult thing for me to watch. I still struggle with not wanting to ask for help for fear of burdening my loved ones. I accept that I do have positive people around me who do enjoy helping me and it’s not so bad asking for help.

It is so important that I share my personal journey because I see it every day. More and more people are being diagnosed with Alzheimer’s, Dementia, Multiple Sclerosis, ALS, BiPolar disorder, Depression… it’s overwhelming and terrifying to know and feel that you are losing your mind and you don’t know why or what is real.

I wish I could tell you that everyone is helpful and that everyone is understanding and kind, but that is what Hollywood is for. I’ve experienced bullying, abuse, disbelief.. the truth is not everyone is kind and looking out for your best interests. Some family and friends didn’t believe me when I said I felt like I was dying. I’ve been called a liar, a “great actress”, “she’s not really sick” and once the initial shock of the diagnosis, I was still told there’s nothing wrong and I need to get over it. I look back on how wrongly I was treated and I think about those who remain trapped in their minds and lose their ability to even verbalize how they feel before they even get close to a proper diagnosis. All of the negative parts of finding a diagnosis are born out of ignorance and there is a quick cure for that. Knowledge.

I highly recommend this movie found on Netflix and I hope it helps you to understand how to navigate through finding a diagnosis for yourself. I hope it also helps you understand how complex the disease of the mind is. It is a terrifying and life threatening road that many don’t make out of alive. Susannah Cahalan received the cure in time and this movie leaves a lot of promise for future research and cures for brain diseases.

My next stop will be to pick up the book!

Hope you enjoy the movie!

Much love,

SS

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A Shared Journal

My Nest Won’t Empty

A subject that has come up quite a lot but I really feel strongly about. Strangely a topic that seems to peak the curiosity of many and that is… “Don’t you think you’ll miss them terribly when they move out?”

The answer in every fibre of my being is N-O! Some msy say I’m “cold” but I honestly feel that is my job as a mother. To raise and release our children into the abyss of adulthood. I’m ancient enough to know that if we have any expectations of our children we will feel that low blow of disappointment, so I choose to stick with hope and a prayer.

I believe that is truth in all our relationships. Life has an interesting way of keeping us grounded and my children ground me and keep me going ensuring that I’m guiding and leading and on top of my parenting game at all times. Once they’re ready they will let you know.

I touched on the subject a bit on my last livestream. Now that things are more steady in my life I will be able to share more and it’s going to be so fun!

For now here’s my last livestream I will have videos uploaded very soon too so hold tight!

Thanks guys and cheers to a new and fabulous week!

My Nest Won’t Empty

SS

A Shared Journal

10 Things I love about Summer

10 Things I love about Summer

For many of us Canadians, the winter of 2017-2018 has been a long and bitter journey so when the Weather Channel reported high double digit temperatures, I immediately began packing up the winter gear.  I feel like this summer is so long awaited that I have spent a few sleepless night planning all the things I want to do with the boys once school is done.  In the meantime, here are the 10 Things I love about Summer.

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  1. Pedicures. The cold winter days had us covering up with socks and leg warmers so every year, I look forward to my first summer pedicure.  I always purchase the package that includes all the extras like leg and feet massages.  I’m booking an appointment as soon as I’m done writing!IMG_4082
  2. Sandals.  Goodbye to clunky heavy winter boots and HELLO to sandals and flip flops.  As much as I love the fashion of layering clothing, nothing beats being able to slip on some fancy slides.  That flip flop sound is like music to my ears.IMG_4081
  3. Summer Clothing.  I tend to be in denial throughout the winter months and I wear my summer dresses under layers of sweaters and hoodies.  Now that summer is bringing on some humid high temps I am all about wearing next to nothing flowing breezy clothing.  I can’t wait to be lounging around in my dresses outside instead of a pyjama option.IMG_4080
  4. Napping Outside.  Ahhh that fresh summer air and the sounds of birds chirping and leaves dancing in the breeze.. Yup, one of my absolute favourite things to do is NAP!  BUT the option of being able to sleep outside in the shade is no doable!  I just purchased a new patio umbrella and am waiting on some new furniture.  No, there will be no dining furniture, just straight up lounge chairs and sofas this year.IMG_4079
  5. Picnics.  With a crazy busy schedule over the last few years, I really haven’t had a picnic with just my family in a long time.  We used to go to the city park, buy a bucket of KFC and play football and frisbee.  I think I’m going to implement that in my summer routine.IMG_4078
  6. Beaches.  Canadian beaches have been hiding under blankets of ice and snow so once all of that melts away I can’t express how beautiful the beaches around the Great Lakes are in my country, yes, some have white sands.  I hope to get on a boat this year, I haven’t been sailing in years!IMG_4077
  7. Campfires.  After a full day of sun, it’s almost a given that there will be campfires in my summer future.  The smell of burning wood and the sound of the crackling fire are so relaxing.  It’s guaranteed that my hair would catch all the wood burning scents, but it’s worth it.IMG_4076
  8. BBQ. It isn’t a summer without a good cookout.  I make requests for feasts of charcoal BBQ treats every year from my family and they never disappoint me.  Not only do the children love fresh noms off the grill, but I love that there are no pots and pans to scrub after a BBQ dinner at my house.IMG_4074
  9. Quiet Days.  I am very blessed that I live in a quiet neighbourhood and since I’m early retired, the mornings get so quiet with everyone at work.  I have a new cardinal bird that has been showing off his vocal skills lately and it is the most beautiful sound to hear.  I named him Mr. Wallace (*Pulp Fiction reference) and I look forward to hearing the breezes from right outside my bedroom window.  I know my quiet days are numbered, the kids will be on summer holidays so I’m going to soak up every bit of silence I can get!IMG_4075
  10. Windows Open.  I know it may not seem like a big deal, but being able to leave the windows open at night and in the early morning is a dream to me.  I don’t hear traffic or people.  Just the sounds of wind through the leaves of the trees, birds and crickets chirping.  Oh Summer, thank you for waking up!

Think about all the things you love about Summer.  If you, like me, realize that you haven’t done some of your favourite things in awhile, I hope you put it as a priority on your Summer To-Do List!

Cheers!

SS

A Shared Journal

Bullet journals & Heffalumps

2017 ended with a lot of promise and a lot of planning and like every year previously, I have to start with a new planner.  Now I have always had a journal where I would write out random thoughts, short stories, poems, ideas, etc. but I noticed that over time and as I found myself disciplining my thoughts more to tailor towards my goals, I found that my journals were feeling more like a “security blanket”.  I was reading back through my writing and it was becoming more random and sadly I was even writing less frequently.  I can freely admit this was most likely due to depression from fighting SJS, but I also feel that my writing instruments were getting a little outdated and boring.  I came across the one bullet journal video and then before you know it I ended up watching a string of youtube videos for the entire day.  I did some research on some different dot paper notebooks, art pens, art markers.. I placed my Amazon order, stalked it and waited impatiently for my new bullet journal adventure to begin.

Yes, I am a gadget girl and I do use my iPhone calendar for appointments, alarms etc. but guys, there just isn’t anything in this world that can ever compare to the power and magic of the pen to paper.  I am and always will be a writer they are my favourite tools in the world.  Since I’ve been using the bullet journal system, while adding some creative touches of my own, I’ve managed to be a lot more productive and inspired in my artwork as well.  I kept my creative energy flowing and decided to move into a new studio with bigger space and amazing lighting.

Since I’ve been doing some much needed redecorating, I decided to include some of my art dolls into my room decor.  Now, reborn doll collecting is a fairly new so displaying them is left in actual baby furniture, etc there are no stands for them.  So I found a pillow in the shape of an elephant. I was so excited to find it because who doesn’t want a heffalump pillow?!

It’s definitely the right time for big moves!

SS

 

A Shared Journal

Whoa! That was close!

A follow up to my las Vlog about my skin reaction to my new drugs.

I called my doctor on Friday and explained all the problems with my skin, night sweats, etc. As part of the neurological team of specialists working with me, I have never experienced a doctor, let alone a specialist, drop everything to get on a 3-way call with his nurse and me to instruct me to reduce my meds immediately. It’s pretty scary since I’ve been on these meds for a year!

I was in the early stages of Stevens-Johnson syndrome and basically was chemically burning from the inside out and my organs were starting to shut down.. in a nutshell I was dying and days away from being hospitalized. The syndrome would’ve meant I would’ve been treated in the intensive care burn unit and would take months to recover! I describe the rash pain like when you scrape your knee, for example, it starts to heal but is tender to touch during the process. It’s the same feeling only the pain is from under the skin. It’s the weirdest thing. The human body is amazingly resilient and efficient. It was trying to get rid of all this chemical crap that was in my system.

The trick to this whole MS disease is the delicate balance of medication which changes and can easily be thrown out of whack. The hard part is that as soon as I feel good I don’t want that feeling to go away despite the side effects. I guess my balance has to be found in not enduring through the side effects. I’m not much of a complainer, but I’m gonna have to start writing some issues down.

Travel and events in the next year are already in full swing, contracts signed, staff to hire, etc. I need to be in medical healthy balance now more than ever! I hope this is the last hurdle I have to jump through.

I would say that’d be my Christmas miracle this year. Being with my whole family for the holidays has been awesome despite my medical scare. My family has completely fallen into abundance. Being around friends who share the same core values, interests and enjoy a good game of cards or pool 🎱 has been so fun. I’ve seen a whole different side of Canada and I’m going to see even more in the new year. I will definitely share that here.

Hope everyone is having a great week! Stay healthy, listen to your gut feelings and always love yourself and your life! Take care my friends ❤️

SS

A Shared Journal

Getting more creative

I’ve been sick lately which has forced me to slow down on a few time sensitive things such as poster and media, designs, target dates.. it was getting to be a bit much. I guess this cold is somewhat of a double edged sword.

I get a lot of questions about my dolls. I used to be really stand-off-ish with everyone because I really wasn’t confident in my work. Like most artists I know we are our own worst critic but it wasn’t until the last 3 years that I finally let go and embraced what I’ve learned and continue to learn about my craft.

For the next part of my journey I’ve decided to get a little more artsy fartsy. Now this won’t be just a road of making and selling dolls, I’ll be documenting more if my personal journey as an artist. So let’s begin tonight.

It’s 1:43am and I’m waiting for the paint to dry while watching Netflix on my iPad. The house is nice and quiet and there’s only one light coming from my desk lamp. It actually reminds me of my childhood. When I was in either grade 1 or 2, I loved the Disney version of Pinocchio. There was a picture of Geppetto working in his workshop at night looking up at the sky wishing for Pinocchio. Haha I guess it’s eerily very similar. This took s very strange turn. Maybe it’s the paint fumes 🤷🏻‍♀️

More soon!SS

A Shared Journal

Feeling comfortable

I can’t say how happy I am to finally be able to enjoy my artwork. I love what I do! I’ve been slowly building my doll collection, yes I’m probably going to be one of those women with a bunch of dolls. I did promise myself to not get crazy and go over 10 dolls in the entire house… ok well, I promised my boys.

It’s the beginning of the Christmas season and I can already hear the sound of crunch time. I have a few dolls to make before Christmas and few of my own I want to complete.

A couple of events happened over the last couple months that would’ve left me jaded about 5 years ago, but today is a very different day. I felt validated and self assured that I am on the right path. It’s funny what they say. When you feel adversity or opposition from others, it says a lot more about them than it does about you. I’ve learned that you do choose your future and things may look bleak but it must look that way temporarily in order to achieve what you deserve. 2018 is coming up fast and I am extremely excited! There will be lots of meetings, planning, coordinating, but my goal is worth it!

Let the Christmas songs, sweaters and Santa pictures begin! 🎄