One Hell of a Weekend

Hey guys,
How are you doing?? I hope you are seizure free, wherever you are. Whether it be for a few days, hours, or weeks. Sending you love.

Sobaby to preface this, my Sunday was actually more h*ll-ish. I actually can’t remember what I did on Saturday but I think I was seizing and sleeping.

My family is wanting to adopt a kitty, so while we were on the way to the SPCA I asked if we could stop for some Starbucks. Firstly, because it’s fall, and secondly, Pumpkin Spice. Duh? I also got my mum a small coffee which I was happy to do. I remember putting the Pumpkin Spiced Latte down on the little table where you get the lids and milk and the last thing I saw was my Pumpkin Spiced Latte. After that, I blacked out, and according to my mom, picked up my coffee, started walking towards her, stopped then fell backwards. Yup. With Pumpkin Spiced Latte in hand. 3 People in the Starbucks were quick to respond and phoned 911, whilst my mom tried to wiped off all the coffee that had splattered on my face with her scarf and sweater. The Fire Fighters were the first to respond, and I had to hold up an ice pack to my face plus a towel filled with ice-cubes to try and ease the pain.

Thankfully, there were no blisters, which means I didn’t get first degree burns. I am SO thankful. BUT my face does have a coffee like residue on it. It has a brown splatter on it by my cheekbones near my eye. Thankfully I have great reflexes and squeezed my eyes shut, so no Pumpkin Spice got in my eyes.

These types of accidents are traumatic and can make me feel sad. Like, Oh F*** I can’t even do something as normal as get coffee. It also makes me question my safety and I feel uncomfortable travelling in unknown places on my own. Like my friend put it “You are safe, but rattled”. Which describes PERFECTLY how I feel about the whole situation.

Love you all.

Be safe and be well!

Sita Gaia xox

Update on My Life!!

Hey Friends!
How are you doing these days? I recently got back from a ten day road trip, which was fun and….well long. My medications have been increased (seriously?!) so I spent the entire trip walking around like a Zombie with coffee in hand. I know that people with Epilepsy are not supposed to drink coffee, but we NEED it! I don’t know what I would do without it.

Otherwise I am super happy that it’s Autumn and that  I am back home. I am working on my new business to help coach high school and college students who need help organizing and prioritizing their work. Essentially, these students need some help because they are behind in their work. Academic Coach to the rescue! I finally made some calls and wrote some emails that needed to be done today and I am SO happy that I finally ticked them off my list! I don’t know why I was avoiding it for so long.

I just thought I would give you guys an update on my life.

Lots of love,

Sita Gaia xox

Wonderful TedxTalk about Chronic Illness and Media!

Hey guys! I just wanted to share this wonderful TedxTalk that explains so eloquently why Chronic Illness and Social Media when used purposefully are so helpful. This is why I created this blog, Life at Full Volume, because I was lonely and didn’t think that anyone else out there was going through what I was, or could even understand it.

Boy, I was wrong. Thank you for reaching out and supporting me these last 4 years (and more to come!)

Enjoy the tedxtalk!

TedxWallaWallaUniversity

My Identity is Chained to Epilepsy?

unhappy-coffeeHey friends! Happy Labor Day! If you are enjoying this Holiday, thank a Union worker who made this holiday possible.

This past weekend I have been more tired than I have ever been in my life. I ended up sleeping for several days. I have had some of my medications increased, which has increased my fatigue. Coffee is now my best friend. I am going to contact my Neuro’s Nurse tomorrow to express my concerns with her.

Lately though, I feel my identity is chained to my Epilepsy. Over the past few years, I feel as though Epilepsy has become my identity. I am happy to advocate on behalf of people with chronic health issues, but that’s all that I am now. Before my seizures were bad, I used to be a student, a health nut, and I LOVED to dance (specifically Zumba). My seizures have decreased, but that is due to the increase of medications which are making me tired like you might not believe.

I feel like it is easy for a person to lose sight of who they are. In my case, I feel tired all the time and I can’t really talk to others about things that are NOT related to my health.  I love fashion, clothes, and styling outfits. I probably got that from years of watching What Not to Wear. Lots of physical activities I used to do I can’t do anymore. My health has been in limbo for 5 years, which is hard to manage.

I’m in an unhappy place right now. If you have Epilepsy, know you’re not alone. If you are a friend, spouse, sister/brother, etc just try to understand that we can go through these rough times.

Lots of Love,

Sita Gaia xox

Making Head Safety Fun!

IMAG1422Hey everyone! I have finally decided to talk about a topic that is very hard to talk about. I wear a helmet. I was super embarrassed to wear one for the past two years, so with one of my helmets I always put a toque or beanie over it. It looked ridiculous in the summer (or I  looked like a hipster in a dress) but I didn’t want to reveal my secret.

When I got my first serious concussion my Mom put her hands down and said “that’s it!!” So I had to get a new helmet from OptiCool. The helmet was pretty cool, as the brand suggests, but I was still embarrassed to wear it, as it made me feel like a dork.

Today, I went on a culture crawl with my Mom, and there was a table where you could decorate your own hat! Since I didn’t have a hat, I decorated my helmet! I love my helmet so much now that  I don’t even want to take it off. As my friend Cimarron would say “You trailblazer,  you”.

So look, safety doesn’t have to be dorky or uncomfortable. If you don’t get an aura before a seizure, you can still make a helmet fun. It’s also a great conversation starter! Also consider this- wouldn’t you rather be safe than have multiple concussions? My new and improved helmet also makes me feel stylish!!

(Here’s a side view of my new and improved helmet) IMAG1421

Happy Sunday!

Love,
Sita Gaia

My Worst Experience in a Hospital

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Hey friends,

I hope you are having an amazing day. I am writing this post-ictal. Which essentially means I am writing this after having a seizure. If I regret this post later I will just delete it.

This past Monday I was in the Toronto airport, ready to head home. I was feeling confident, and remember taking a small step as I waited to go through security. Suddenly, I blacked out and was taken out of the security line. Two Paramedics were called and they came and checked all of my vitals, which ended up being okay. I was told by Air Canada that I was not fit to fly so I was whisked to the hospital.  I called my friend’s mom- and after the seizure she said I was hysterical when I called. I ended up going to the Etobicoke hospital which is the closest hospital to the Toronto Airport. The Paramedics were amazing, but when I got to the hospital, I was hardly greeted by a rude nurse who mumbled his name. I couldn’t even figure it out for myself as he had turned his name tag around so I couldn’t actually see his name.

The other nurses weren’t great either; they stood around bitching about their clients instead of actually helping them. Some of the medical team did not believe that some of the seizures I had were actually seizures.

When I was on the phone with my mom I remember saying “OH YEAH. MY NURSE? HE’S A TOTAL ASSHOLE!!” Little did I know, he was right there.

Needless to say, the medical staff was useless, it was dirty, and I was miserable. I have been to many hospitals and have come across many nurses, but this was absolutely horrendous.

My friend’s Mom said she would write a letter of complaint? Will I do the same? I am not sure. But all I can say the quality of care was below sub-par.

Do you have any horrible hospital stories? Share with me!

Love,
Sita Gaia

 

 

A Blog about Living a Whole Life With Epilepsy