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

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 · Stiletto Vlogs · Video

Vlog #19 Stuffed.

I had a fantastic Thanksgiving celebrating with family and some new found friends.  I love being surrounded by so much positivity.  The weather is beautiful, the kids are happy and there’s nothing but awesomeness coming up!

Happy Thanksgiving!

A Shared Journal

Over already?!

It's the Civic Holiday weekend and it feels like the summer months passed by so fast! I blame most of this on the weirdest weather I've seen in years! It would rain so hard it sounded like hail against my windows, thunderstorms at least once a week followed by extreme heat where I could hardly breathe. Although, I'd rather have this weather than the upcoming winter months.

The back-to-school supplies and clothing are in all the stores, I can almost hear my bank account cry for my school shopping days that are just around the corner. It will be an emotional school year for me as my last little pterodactyl will be leaving the nest to go to school. So far, he knows his numbers up to 10 and backwards, but he refuses to sing the alphabet song lol. Thanks to the iPad he does know what the letters are, but he just doesn't like the song. I'm guessing that he thinks the song is dumb, he rolls his eyes every time I ask him to sing it.

Lately, my days are filled with doll orders and event planning. It's a truly exciting time for me. I have found what I love in all aspects of my life from the kids, social life and now my artistry. They often say that when your personal life is good everything else around is chaos. I am living proof that the saying is NOT true. We all need to find the balance in our own lives or things get harder and harder to do. It's like the universe makes some things in our lives difficult in order to accept something better in our lives. "Out with the old, in with the new" has a deeper meaning than we think. This whole year has unraveled many important life choices for me. My family relationships have been stronger now than ever, financial security is finally here, reuniting with my childhood best friend, maintaining deeper relationships with my friends from all over my online world and forming new amazing friendships who have cleared my mind and settled my soul.

Yes, you can have it all, yes abundance is attainable. If you want these things, you have to release everything that you know is holding you back. It will seem so difficult to let go, but it will be worth it and those difficult moments you are experiencing right now, will be in your distant past. Right when you're about to give up hope is when you have to gather up as much strength as you have to get through the rough moments. You will see your end goals, not when YOU want to see it, but when you're ready to accept it.

SS

A Shared Journal

🇨🇦CANADA DAY🇨🇦

What a fantastic celebration for my beautiful country!  I’ve been reuniting with family and solidifying our bonds all day!

I’ve had weeks of excitement watching my fellow Canadians decorating their homes, cars and clothing with our beautiful red and white colours. This is the one day that I wanted to be filled with love and laughter and it came true.

Canada has given my family so much opportunity.  From the Philippines to Canada my family was welcomed despite the ignorance of racism and the uphill climb to success.  Being born and raised here,  I have learned so much and I continue to learn more about Canada each day.  I am a proud Canadian living in the best country in the world.  The best part of living here is being surrounded by so many cultures and traditions from all over the world united in one country.  Canada is best described in our own anthem. If you ever get a chance come on up here and enjoy us. We work hard and play harder 😊

Canadian Anthem

O Canada, our home and native land

True patriot love, in all thy sons command 

With glowing hearts we see thee rise

The True North strong and free

From far and wide, O Canada, we stand on guard for thee

God keep our land, glorious and free

O Canada, we stand on guard for thee 

O Canada we stand on guard for thee 

🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦🇨🇦

A Shared Journal · Stiletto Vlogs · Travel With Me · Video

Stiletto Vlogs 06/03/17 Farmer’s Market

This is  one of my favourite things to do in my surroundings.  We have a fabulous fresh Farmer’s Market close by and I just love it.  Fresh fruits and veggies, meats, baked goods and the sound of vendors yelling out their upcoming sales is like music to my ears.  I even had a chance to look through all the furniture that I will be decorating my house with.

I stocked up in meats, bought some amazingly fresh butter and raspberry cream tarts and smoked mackerel.  OMG I love this so much, it could be my childhood upbringing when my parents other family friends would get together have potluck dinners, there was always BBQd fish somewhere among the sea of Filipino foods.  I decided that I want to share that same kind of traditions with my children.

I hope you enjoy the video of the travel to the Farmer’s Market!

More to come..

SS

A Shared Journal · Video

Let the Sexual Saturdays Begin!

I did a YouTube Live stream a couple weeks ago and so, by popular demand and request, we’re coming back this Saturday!  Stop in and join our chat!

Join us here: 

Sexual Saturday with Stiletto & Friends