Tag Archives: health

Advocating for BC Epilepsy Society

Hey bb’s!


How are you doing this Wednesday afternoon? I saw my epilepsy specialist, as it was an appointment to see how my Vagus Nerve Stimulator was working. It was increased a bit, and I told him that I have been feeling insanely tired lately. Moreso than usual, I’ve been sleeping for a solid 12 hours on some days. I was impressed that he didn’t just brush it off as recovering from my seizures last Friday. Instead he said, “Keep an eye on that”.

WOW! I wish everyone had a health care team like that and support that they could go to. That’s why this month I am working to raise One thousand dollars for the BC Epilepsy Society. That way we can support more people with epilepsy, as we are all one. If you are interested in supporting my Go Fund Me, go to Go Fund Me and every dollar counts! I was inspired to do this by my friend who raised 1000 dollars for the BC Arthritis Society.  I thought hey, if she can do it, so can we!

Any questions, their website is BC Epilepsy Society , and if you have any questions for me, feel free to leave them below or shoot me an email at sita.gaia@gmail.com

Thank you for all the support! We got this!

Sita Gaia


The Holly hell of The Holidays

Hey bb’s,

Holiday season is upon us! I love the holidays, despite that where I live we rarely get a white Christmas, it is still fun to put up your tree, buy gifts, and write Christmas cards.

I asked WeYou're invited to anfor  addresses for so many Christmas cards, and since  we are living strange and worrisome times, multiple friends asked why I could have their mailing address. Is sending Christmas cards that old school?! I guess so.

Since I have made multiple big changes in my life and I am still adjusting- my neuropsychiatrist told me I am not allowed to work. He told me I need to relax more, and I had to ask him what he meant by “relax”. I am not a relaxer by nature- I love gallivanting around, seeing friends, being in Starbucks, making new plans and cleaning the house. (OK it’s an apartment but it’s easier to clean than when I was living with my parents.). I also love Fri-dates and Satur-dates with my fiancee. It has been hard to relax, as I got all of my Christmas shopping done and sent out a million Christmas Cards. (OK only ten lol).

Like anything, there is always a downside to Christmas. My epileptologist told me that Christmas is the biggest time where his patients have seizures. Last year I was out with seizures for 5 days after Christmas day. I find it exhausting to do two back to back things on one weekend, and as much as I love my family, too much family time can be too much! Despite being an extrovert by nature, I get sleepy earlier than most people. I am grateful that I am in a family that understands when I need a nap. My fiancee also wants to make sure that I am not “over doing it” so for that I am eternally grateful.

If you have a personal friend or family member in your life with a chronic illness, or even mental health issues, please be mindful that we are doing the best we can. We don’t have tonnes of energy, and sometimes pain, or  feeling overwhelmed gets to the best of us. The best gift you could give us is kindness and understanding that we are sometimes extra tired. If we have to miss out on something, such as due to having too many seizures, we don’t mean to.

Lots of love,
Sita & Jojo

P.S. Yup that’s the tackyaf tree that me and fiancee have. It was my idea, of course 😉

Why It’s Hard for Me to See People in Hospital

heart holding hands

Hey friends, I have seen my fair share of hospital beds. Due to uncontrolled seizures, accidents, on going tests. You name it. It almost feels like I have the “Hospital corners” in my stories with family and friends.

I need to remember though, that when I have had family and friends in hospital- it is not about me. It is about them. My brother has been in hospital for some very serious surgery. One of these times it was when he was visiting me in Ottawa, and I couldn’t bare the thought of seeing his usual self reduced to a weak and hurting person.

I told my cousin that I couldn’t come to the hospital and he reminded me that we need to “show up for family”. He couldn’t be more right. Me not visiting my brother in the hospital wasn’t about me, but  about him. I needed to be there for him. I remember my own countless hours in the hospital where I anxiously anticipated someone coming to visit me for a couple of hours. It was the highlight of my day.

When I visited my brother….was it painful? You bet. Was it worth it? Hell yes. I still remember a weak smile forming across his mouth as he asked to try on my winter hat (Which he had previously made fun of me for.) I let him try it on, and we walked slowly
around the hospital halls, with all of his IV’s and machinery attached to him. I told him slowly about my day and how my university classes were going.

My brother and I have never talked about this experience, but it was this one situation that taught me that you really do need to show up for friends and family- regardless of how uncomfortable it makes you feel.

Ultimately, showing up through a visit, phone call (visit is ideal if you are close by) says to the person “I love you. I care about you. I hope your health gets better really fast!”
It makes the person in the hospital feel less alone, which is essential.

Lots of love! xox

Holy Shoot Things Are Amazing!!

Hey Everyone!! Hope you’re well- seizure wise, work- wise, partner wise.

courtesy of Elephant Journal
courtesy of Elephant Journal

My seizures have dropped dramatically over the past few months and I can confirm that things are improving because my neurologist said things are getting better. My depression is easing off (finally!!) and I have an interview for a volunteer position on Wednesday. The position? To help someone with a head trauma with motivational writing. I got this, guys!! Even though I am not ready to work, volunteering is a good step in the right direction.  Sometimes things don’t work according to “plan”, but maybe the trick of life is to go with the flow and ease through the tough times. You need to be a fighter sometimes (health, in this case), but things do work out!
Holy fart. This is happening guys!

Lots of love xox

Why My Strong and Positive Energy Doesn’t Always Last Forever

OITNB newEven the strongest and most positive of people will have their breaking points. As mentioned earlier, I have always been told how strong of a person I am, despite the fact that I didn’t fully understand what my friends, family members and even professors meant when they told me this. Consequentially, I only gained a sense of my own strength once I feel it’s shiny surface finally start to crack and shatter at my feet in a million little shards.

I have also been told how positive and cheerful of a person I am.  I’m an extrovert! I love meeting new people and savouring moments with old friends. If you know me in real life you know that I love to talk on the phone, go grab a coffee, go for a walk, etc etc. I wanna hear about everything that’s going on in your life! Having that connection with my friends gives me a real sense of purpose-and that I have friends in my life who care about what I’m going through.

its not who you areThis weekend has been tough though. On Sunday I had 15 seizures (due to reduced meds, which was safe to do since I am in a hospital and I am surrounded by nurses.This was also prescribed by my neurologist).  The seizures seem to be continuing into Monday morning, and even though I was just given Ativan through an IV, my mood has dropped significantly. Having excessive amounts of seizures is exhausting, and can make you feel like you are not autonomous enough to do the things you want to. Additionally, seizures just seem to suck me into a dark cloud of sadness. I don’t know why. It’s just the way my brain is working.

funny-win-story-even-after-all-this-time-the-sun-never-says-to-the-earth-you-owe-me-look-what-happens-with-a-love-like-that-it-lights-the-whole-sky-hafizEven though I was able to acquire my Bachelor of Social Work degree, I still have friends who are out and about working amazing jobs, living with roomies, and involved with partners. Having uncontrolled seizures isn’t my fault!! Some days I feel like such a terribly unaccomplished person. I can’t help it if I am high achieving! It’s hard to not compare yourself to your friends and younger family members, such as cousins.  I honestly feel like the next few years of my life will consist of living in and out the hospital, but I really hope that it is not the case. I have hopes and dreams for the future. I want to become bilingual, study my Masters of Social Work at McGill University, and find my dream job in Montreal. I am itching to move and learn and meet new friends. I try to keep this at the top of my mind when I feel down, but every once in awhile my shiny exterior has to crack and the flood gates will burst.

So I guess that’s where I’m at now. Feeling discouraged, sad, and encompassed in the dark cloud that I dub post-ictal sadness. (For you non epileptics, Post-Ictal means “after a seizure”). I think I should have a conversation with The Universe soon, and make sure that I will ultimately receive treatment and that it will work. Living in hospitals forever doesn’t jive with me. 😉

Can you relate with any of these feelings? Do you feel “behind” in your life due to seizures? Worry that your son/daughter/brother/sister feel the same way? Send positive vibes my way! lots of love! xox

Let Me Tell You My Story About Being Strong and Vulnerable

life is like a bicyclePeople have always told me how strong of a person I am. I remember when I was 20 years old, and I had my official serious break up. My ex-boyfriend’s mother approached me and said, “Don’t worry about this Sita, you are a very strong woman. .” I was baffled at such a comment for two reasons: first of all, why was she telling me that I would be fine? Secondly, what did she mean by strong? That I had the will to get through this, despite personal heart ache and frustration? The second time that people told me that I was strong was when my epilepsy started to get out of control. They would say to me “Sita, you are so strong.” I was confused. I asked friends and family what they meant by strong. It most definitely wasn’t my muscle strength; it was decaying due to my lack of ability to work out. My once toned arms and legs now were simply that: arms and legs with no defined muscle. “You just get through so much,” they would tell me. The answers I received never seemed to suffice. Well this was the time that I felt the need to pull out the good old Merriam Webster dictionary. Okay, I lied. I actually googled the definition. The word ‘Strong’ is defined as ” Having great physical power and ability: having a lot of strength”. Huh, so that’s what my friends, family, and even professors were telling me. It helped to put a definition to the adjective of my character. I didn’t know why I was being defined as strong. I was just trying to deal the hand I was dealt, and work through it to the best of my ability. I just figured that this was life. Everyone dealt with something, I just happen to deal with a chronic condition that was severely interfering with my ability to live my everyday life.

I-Believe-In-Being-Strong-Motivational-Love-QuotesThe other day I was mulling this over, and I thought about a Ted Talk by Brene Brown, “The Power of Vulnerability.” (See link below). Watch it. I’m not kidding. In my natural fashion, I re-watched the Ted Talk and it made me think about vulnerability and chronic illness, and my experiences with the two. Through experiencing extreme troubles with my epilepsy, I became a very vulnerable person. I started to live in an honest and true fashion, and I came to realize that hiding who I really was would put me at danger. When I say danger I mean physical and emotional danger. Brene Brown talks about how being vulnerable brings people closer together. I could not be more vulnerable that I have ever imagined. This way of living brought my friends, family and even complete strangers became closer to me, and they wanted to help as much as they could. By being vulnerable I gained connection, acceptance, and love. This shocked me. Not because I didn’t believe that my friends and family could be supportive, but I never thought that by becoming vulnerable through my chronic condition would bring even more acceptance from friends and from people who I considered to be acquaintances. I found that people liked that I was putting myself out there, and that I was not afraid to expose who I really am as a a person. People appeared to like that I was not afraid to tell them the truth of my reality, despite how shitty it is at times. People liked that when I talked to them, all of my cards were laid out on the table. (So many card references in this post, it’s an accident I promise!)

bullshit-mother-fucker-quotes-separate-with-comma-strong-truth-Favim.com-83751Okay so how does this idea of being strong tie into being vulnerable and this amazing Ted Talk? Ok,so you caught me. Being vulnerable takes strength. It’s hard to expose your true colours and share everything that you’re going through, good and bad. If anything, through this journey of living with Epilepsy I have learned that it is okay to share my journey with people. If people don’t jive with my journey, then I don’t have to have to have a connection with them. It’s that simple. It also takes strength to go through the times that I am going through. Oh my god! I think I just made the connection of what everyone has been telling me! You get to be a witness to it! Although I still see myself as an everyday woman, it takes strength to be vulnerable, and by being vulnerable it allows you to create stronger connections with those around you.

Love you lots! Keep fighting the good fight! xox

Living with Seizures and Experiencing Alternative Realities

WP_000450Seizures are tough. Sometimes I want to huddle under my blankets forever or I can’t shake the fear after taking a tumble. In addition, some of my seizures cause the experience of an alternative reality. This is no joke. I am an not trying to be witty or humorous. I have experienced seizures where, for a certain amount of time I completely and 100 percent believed that I was a different person and in a different context. Mind blown yet? Just wait. It gets better.

A couple of weeks ago my Mom and I were going for a walk in the park near my house. As we were approaching the part of the park where there is a grassy meadow, I fell backwards in a seizure into the soft grass, and I don’t know how long the seizure lasted, but I remember believing that I was a five year old at a birthday party. When I came out of the seizure, I remember feeling almost annoyed that I had left that reality. I was having fun as a five year old! Now I was back to every day me, and I hadn’t even had the chance to have a piece of cake at the party. Humph.

One of my other alternative reality experiences occured when I was at the Neurological Hospital when I was showering. I went from washing my hair to suddenly talking with Ashton Kutcher (From That 70’s Show! Remember him?) We were good buddies and he was just funny and charming as he in the movies and TV shows. I have no idea how much time I lost, but suddenly I was me, in the shower again, slouching on the shower bench with the hand shower device drooping in my left hand. I didn’t tell any of the nurses any of the details of that seizure, beyond “I had a seizure in the shower”. Which, by the way having a seizure in water can be VERY dangerous, as you can go unconcious and say if you’re in the bath and unsupervised you could potentially drown. Scary, I know but it’s a reality. That’s why I always take very quick shower and never bathe when I’m home alone. It’s probably been about 3 years since I’ve had a bath.

So you’re probably calling my bluff and guffawing at all of this. These experiences sound more like dreams, you might say. The thing is, they aren’t. I wasn’t sleeping, but a part of my brain was acting in a way that changed my perception of reality. It’s actually kinda cool. If you think about it, I have experienced multiple realities. My day to day reality plus these ever so often alternative realities. I can tell you for sure that I have been in my room by myself but was talking out loud to someone that wasn’t even there. I was sitting on my windowsill in my residence room (the windowsill was right above the bed, and not high up) and I was talking to a “friend” who came into the room because she was worried I was going to fall. I told her that “Aww I knew you were going to come into my room because you thought I was going to fall. Well, I didn’t!” I’m not sure how I remember this conversation, but in the moment it felt as real as ever. I’m not going to lie, but I actually kinda enjoy these weird alternative realities. They’re neat in a bizarre kinda way. I have had at least 4 of these experiences (probably more), and all of them were different. I was alone for almost all of them, so I don’t know how long I existed in each of them.

This is a rad part of having seizures.. Somedays it’s like living in a Sci-Fi movie, so it keeps life interesting. Yeah, yeah I know, seizures are difficult, but I may as well appreciate the interesting ones. This is not uncommon for people with seizures. Sometimes they believe that they are somewhere else and are completely disoriented. SO I know I’m not the only one with these experiences. If you don’t believe me, then that’s cool. But this is definitely 100 percent real.

Love you lots! xox