Tag Archives: Epilepsy

How Disability Support Keeps the Disabled Poor

I am very angry right now. I was just on facebook and a friend of mine, let’s call her Annie, posted that since she lives with her boyfriend and he makes more money than her, she is losing all of her disability benefits. Correction, Annie has such severe anxiety that she is unable to work. Annie’s only source of income is disability. Now that Annie’s partner, James is considered a common law partner- Annie is being cut off.

I have been so angry, and anxious for my future. I can only work part time at best. I don’t even work right now, as the field I am trained in requires most people to drive a car. That is fucking ableist.

I know no one will leave me out on the streets, but this is why I am starting my own private practice.  I will probably be poor my entire life, but a little income is better than nothing. I feel like crying. I feel like punching something. I feel paralyzed by my anxiety. I say a big FUCK YOU to my epilepsy. I am anxiously awaiting my Vagus Nerve Stimulator which might help, but still. I hate the unknown.  Are you on disability? Do you feel the same way?

Love,
Sita & JoJo

When Chronic Illness Gets too F*cking Real

Chronic illness got too f*cking real today.

crying galI have been having seizures on and off since Sunday, but today was good. Or so it seemed. I have a massive headache, hence why I am drinking iced coffee, and have taken a few Tylenol. My parents are in the US because my brother is doing his PhD defense….and they wanted to be there to witness that. I thought “Awesome! My parents will be gone and my aunty will be staying with me!”

Last night I ended up barely sleeping, and I cried and cried in bed this morning because I felt horrible and wanted my mom. I also felt like an idiot, because as a 27 year old, I should be able to cope without my mom.

My aunt consoled me, and I waffled back and forth as to whether I would go to my one class this week. It is unfortunate that it is on a Thursday, as Thursdays tend to be my “crash day”. Ultimately, as the stubborn Taurus that I am, I headed off to meet a few friends before class so we could review some of the material for our quiz today. I also told the professor that I wanted to review a mark that I got on a previous assignment, so I couldn’t put that off. The professor had some great examples as to how I could improve, but I couldn’t help but feel the frustration that I wasn’t doing well in the class, and why it was so hard to pick up the skills. I managed to (mostly) hold myself together while talking to the prof, and after she said that she would let me take the quiz at a later date, I headed to the classroom to say hi and goodbye to some of my peers.

One of my peers caught me in the hallway and everything fell apart. I hate to complain about having epilepsy, but the headache, frustration, and going home all came to a head and I ended up having an ugly cry. She was so kind and hugged me and told me that she was frustrated too- and that she would text me regarding what happened in class. She hugged me which made it feel a bit better.

Finally I went and walked to the class, where my friend said he would walk me to the subway. I decided to refill my iced coffee, and when the guy in line at Starbucks turned to me and asked “How are you doing today?” I was very Un-Canadian and said “awful”. He didn’t know what to do with this information.

So, chronic illness has given me a blast. I am exhausted, feel over committed and stressed out because of one friggen course.

Love you lots,

Sita & JoJo

The Power of Thought

A couple of days ago I was dozing in my bed….and the thought crossed my mind about how my EX might have an inappropriate relationship with her counselor. Somehow, even though I was half asleep…I started to jerk which shook me fully awake. I then stumbled around and took some ativan…so in case any of those thoughts popped up again, I wouldn’t be shaken awake.

Isn’t it amazing how the thought of my ex and her counselor shook me awake? It was able to have that sort of impact on my body. I think about when I get really really angry and then lose full control over my body. It will do whatever it wants. Stiffen, seize, fall over. You name it. I have to be so so careful with my emotions and how I handle them, otherwise my brain will start to misfire (or not fire!) and I could be in serious danger with injuries.

Speaking of injuries, I just got better this week from a very mild concussion last week. My friend also has epilepsy and was very severely concussed at the same time. It was kinda crazy to think that we both got concussions-mine mild and hers severe-at the same time.

Anyhooo I am feeling like a night owl tonight. It must be all of those damn meds. Please tell me I am not the only one with sleeping problems and medications!

Love ya lots,
Sita & JoJo xox

My Biggest F*cking Aha Moment

Today I had the biggest fucking aha moment. I was standing in the kitchen with my mum, after a dinner that my dad had prepared.

I have been going through a rough patch recently, with constant low mood, which has put a damper on my every day quality of living. On some days it is an accomplishment if I make the 15 minute walk to the Starbucks near my house. The depression feels like it eats me alive sometimes…and although I don’t lie in bed and cry, my body feels numb. I can’t feel anything. I tell people that the mental health aspect of the epilepsy is harder to deal with than the epilepsy itself. I have burnt myself with hot tea due to a seizure. No problem. I was able to rise from the ashes like a phoenix with four months of bandage changes, and a period of time on morphine and Tylenol Arthritis. The physical pain was awful, but I could still get through my every day life.

I have gone into a tail spin when I saw that a peer has gotten their Master’s degree in Social Work. As I told my mum so many times, “This wasn’t supposed to happen!” I wasn’t supposed to have my diagnosis changed to Refractory epilepsy. I was supposed to be normal, able to go out without worrying about what people will think when I ask for the disability seat, and not feel like my soul is drowning in depression on the really bad days. You can tell it’s been a bad time when you see me in the same outfit multiple days in a row, or when I need to put clothes on the floor near my bed so I can easily reach them when I have zero motivation to do anything.

Regardless, while we were in the kitchen, my mum put her hands on my shoulders and said “You are doing so, so, well. For someone in your situation, I am so impressed.” I was flabbergasted. What? I was doing well? ME!? On the days that I hide under my covers? The fact that I am not independent? “Yes,” my mum said. “You still get out there and socialize, and you ask for help when you need it. You could just be in a hole, but you make the effort not to be.

WOAH. My mum is right. I could just hide and be in my own little world. I’m not though! I am taking a pre-requisite at a community college, am an active co-organizer of a queer women’s Meet Up group, see friends, practice yoga, ask for help when I need it,  and spend time with my family….to name a few things.

Holy shit guys, I’m not letting life pass me by! I am living it- chronic illness and all!! I am not a failure!!

Love,
Sita and JoJo xox

Finding Mentors Through My Community

Hey friends! Can you believe that it is Christmas time again?? I can’t! This year has just flown by.

I have been thinking about community a lot lately and how I have found various mentors. I have grown my community in multiple directions- Yoga, Public Speakers, Life Coaches, Entrepreneurs, and not to forget my friends and family. I don’t think that everyone realizes it, but they contribute something powerful and meaningful to my everyday way of life.

When I was first recruited for TEDxStanleyPark, in December of 2015, I was elated. I was soon to be one of the people standing on the stage, sharing knowledge and wisdom like the people in so many TEDxTalks that I looked up to. I was recruited late in the game, so when I went to the very first rehearsal in January 2016, I was nervous but oh so thrilled to be there. I needed to soak in every bit of information that I could, having never done anything like Toastmasters, and only a bit of public speaking prior. After the first rehearsal, I soon became engaged with one of the speaker’s talks. She was charismatic, witty, and had a powerful personality. She knew how to deliver a good talk.

I already had a coach, but as a novice speaker, I needed all the help I could get. I knew she wouldn’t give me any BS, and would tell me like it is. Sure enough, that’s what happened, and I honed in my public speaking skills.  In addition, I took her entrepreneur course, which taught me how to lay the ground work for starting my own business. I worked hard at entrepreneurship, and even though found it wasn’t my calling in life I found some very translatable skills that I can carry with me for the rest of my life. She has also given me the courage to keep moving forward- especially when things get tough.

I am so lucky to have Isabelle as one of my mentors. Her support means everything to me, and helps me to live life at full volume, despite my epilepsy.

I Am Approved for the Vagus Nerve Stimulator!

Hey friends!

vagus-nerve-stimulation-publicTwo weeks ago I had an appointment at one of the nearby hospitals to see if I would be approved for the Vagus Nerve Stimulator!! Guess what?! I am!!  I will be having the surgery in about three months, which I am very hopeful for. Hopefully over time it means that I can reduce my medications which make me so tired. I am sure you know what I mean. Some days I feel like a walking Zombie, so it would be great to feel like a “normal” person again. (Whatever the f*** “normal” is).

I was anticipating that the Vagus Nerve Stimulator would be inserted before the end of this year, but it’s okay that I have to wait. I mean, ideally it would have been inserted by the end of this year and it would start to work. One of the interesting things about the VNS is that it can take some time to see if it is effective at controlling seizures. Unfortunately, after the surgery, only part of it can be taken out. I makes me laugh when I look at the diagtam of someone with a VNS; it makes me feel like a bit of a robot. I guess it means when I take an airplane I will have to carry a letter explaining why I set off the machines.
In the past couple of weeks my seizures have been more active, which is hard to manage. Especially this past week my seizures have been out of control and last Tuesday it felt like someone had stuck needles into my eyeballs on top of the seizures. It has been an intense ride! It is also disappointing because I had to miss an event that my friend bought me a ticket for.

So, that’s where I am at.

Love you lots!
Sita and JoJo xox

My Amazing Conversation about Shame

Hey friends,

picture-of-me-1I know I put Life at Full Volume on hiatus, but that’s because when I was looking back at my most recent blog posts, it was all about Epilepsy. I didn’t see Sita Gaia there anymore. This blog is called Life at Full Volume, but seriously, it was Life on Mute. It was Life on Sad. 😦 I just have a diagnosis, and it is not WHO I am.

Truth be told, I have been drowning in Epilepsy. Between Doctor’s appointments, feeling ill, and picking up medications, I was sinking deeper and deeper.

I’m not here to tell you that I am cured, and it’s something I am working on. I do, however, want to share with you something that I love to do. I LOVE having deep, vulnerable conversations. Let me share with you something that happened recently.

I have been reading Brene Brown’s book “I Thought it Was Just Me (But it Isn’t)”. She goes in depth with her research about shame. Shame is a very heavy emotion to carry around, and everyone experiences shame in a different way. Brene Brown talks about “Speaking Shame”- the closer we are to NOT speaking shame, we have a tendency to act out or shut down. The closer we are to speaking it we express how we feel and ask for what we need.

I have a good friend who also has Epilepsy, but her epilepsy is different than mine. I always felt shame when she told me about the newest project she was working on or some new endeavour she was involved in. Prior to reading about this, I would shut down and sometimes act out. I told her in an honest conversation that I felt shame when we talked about her work, because I felt like I wasn’t measuring up. (Ridiculous, right?!) When I told her that, she explained to me that she felt shame about some things too. (WOAH, right?!) . It wasn’t a heroic act- let me tell you this. I finally had the courage to address something that I was noticing in my life.We were really able to get our hands dirty and have this open conversation about shame. In the end? I felt SO much better about our friendship and I have already noticed a shift.

I LIVE for these types of conversations. I feel like I have the strength and courage to be able to talk about things that mean something to me. Thus, I will also attract people who feel the same way. This is partly why I did my degree in Social Work- because I am not scared to wade into uncharted territories and see what will happen.

Expect LESS posts about Epilepsy in the future and more about me. It’s gonna be a good time.

Lots of love,
Sita Gaia &JoJo xox