All posts by sitagaia

Hey friends! I started this blog to help people in the Epilepsy community to feel less alone with their difficulties. I am also interested in Social Work, and body image issues. If you would like to connect feel free to shoot me an email at

5 Things You Never Knew About PNES

Hey friends! How are you? I have been off the radar a little bit because I have been sick with episodes and PNES. Don’t know what PNES is? Be prepared to find out!

1. PNES stands for Psychogenic Non Epileptic Seizures. Across the globe people disagree what to call it- but in North America it is called PNES.

2. PNES is triggered by traumatic events, similarly that PTSD is. These traumatic events can range from childhood to adulthood. In my case I believe it is having serious epileptic episodes that have caused PNES.

3. PNES episodes look like seizures, although they are not coming from the brain. They look like seizures, although are more like a panic attack. When I had my most recent episode, I had a very stressful meeting, and then after I headed to the pharmacy to pick up my prescription. There are a few steps leading into the store, so on one of the steps I “felt weird” and immediately sat down. I started to breathe evenly, because I knew it was PNES. This part is spotty, but I remember gasping for air and my fiance was torn up beside me. I was getting very hot in my Winter jacket, but couldn’t say anything. I also wanted someone to call 911, but again thankfully that was taken care of. I was grasping for words when I could finally start talking, but it was really slow.

4. 20-30% of people with epilepsy have PNES. I remember being so mad when I was diagnosed with it! Not only did I have to deal with seizures, but these weird trauma seizures as well!

5.  It is challenging to treat PNES. For me, I use regular meditation and deep breathing.
According to, “For some patients with psychogenic non epileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder (PTSD). In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body,” Some people use Eye Movement Desensitization and Reprocessing to help their PNES.

Essentially, these days I am working through my PNES. I am super frustrated that my seizures just started to get under control and the PNES is popping up all over the place.


Sita & Jojo


Dear Diary: Confessions of a Millenial

Hey bb’s,

20180204_155752.jpghave run into a problem recently and I feel it needs to be addressed.

I was talking to my mom on the phone today, and she said it was fine that I quit doing something that I was pursuing. But here’s the thing: Why did I need HER permission to do something?

First of all, I am a 27 year old woman. Why do I need to ask permission to do something in life? I feel as though we need to hear  voices of others before we proceed in life. (This is not everyone, but I have noticed it in life). Why do I need permission to take a self care day? To not go to something I was invited to? My friend pointed out that it has to being good, being a woman, and to not trust yourself.

This is stunting us from becoming adults here! Especially as an individual with a disability, I need to be an adult so I can advocate for myself. My parents aren’t going to be around for me forever, and my partner can’t be there for me at every beck and call.

If we constantly ask for permission for something that we need to do, there is going to be an entire generation of people running around needing permission to make the next move in their lives.  I am not saying every person in the Millennial generation is like this, but I feel that it is prevalent!  When I was a teen, and still sometimes today, I will sit down with myself and give myself pep talks. When I was 17, I sat myself down in my room and said”okay, go away for university. All of your friends are leaving. It is better to have left then be left”. What happened to me giving MYSELF permission?!

I am going to work on it…if it’s an issue for you too, work on it with me too.



Sita & Jojo

Dear Universe: My Body Makes Me Sad

Dear Universe,

I know that when sometimes people are stressed, they emotional eat. Sometimes when I am stressed and overwhelmed I can’t even see my body. And I mean SEE it.
Sometimes I drink cups and cups of coffee to help me stay awake and so I won’t feel hunger. Hunger is an awful feeling. Don’t worry, I don’t have an eating disorder. Please don’t worry about that. I still eat. Food is delicious when T makes it.

So I was good and scheduled an appointment with my psychologist. He sat patiently and listened. He said I need to work on it. I agreed. It is an issue. Sometimes I don’t like being touched. Even a hug. That needs improvement. I am working on it universe, I swear. The other day I wrote words all over my stomach. That area is the most sensitive part of me. I still listen to all the hollywood bullshit that we are bombarded with on a daily basis.
I wrote BEAUTY, STRONG, PERFECT, LOVE, and RADIANT all over my upper torso. It helped, Universe.  It helped a lot. I am in charge. Not images that I am bombarded with.
Universe,  I follow all of these amazing body positive people. They inspire me. I want to be like them. Like “Hey this is me I don’t give a shit what you think”. They speak better than that, but you know what I mean.

Universe I am tired. I need to sleep. I am tired of putting out my own personal fires. It’s too much. I think I will be better. This will get better.

Sita & Jojo

Learning How to Carve my Path with a Disability

Hey bb’s!

sleepy pugHow are you doing? I am feeling confused lately, as I am trying to learn how to carve my path while living with a disability.

When I was younger and filled with more zest, I imagined doing my undergrad, and then going to a renowned university for my Master’s. I would be that person sitting in the chair with her own private practice. I would be the person with the Master’s of Social Work. Not quite Brene Brown level, but still, higher up.

Regardless, I did manage to graduate with my Undergraduate of Social Work, with a Minor in Women’s and Gender Studies. If you haven’t noticed, Academics is very important to me and my family. My brother recently received his PhD, and his very serious girlfriend is working on hers as well as my cousin. I am not comparing myself to my cousin and my “sister” (that’s what I call my brother’s serious girlfriend), but I always saw myself going further academically.

Currently, I am disappointed with myself. Owch. That was hard to type. I have been told since forever that I am always too hard on myself, and that my standards for myself are too high. Isn’t it better to have standards that are too high versus too low? If I was happy playing video games while on disability, wouldn’t that be disappointing?!

I am currently unable to work as I have had too many serious life changes, so I need to adapt to them. I have always seen myself as a social worker, but part of me wishes I went to school for Marketing in Business. Since the crash of the economy, going back to school is not an option, plus I am not sure I can even swing it with being fatigued constantly. (Unless I sit in Starbucks all day and get free refills on coffee from my gold card).

My mom has told me since I was a teen “You’re going to carve your own path”. I did not yet have the wisdom to fully understand what she meant, but I always kept that in my back pocket.

I guess I am going to have to come up with a new path, which is hard because I have had one path in mind since I was 12.  Please can you help? Have you ever been in this situation?


Sita & Jojo

Year 2017: The Best and Worst Year

Hey bb’s.


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This is my final blog post of 2017. The fifth year that Life at Full Volume has been running.
I am generally a glass half full kinda girl, so I want to talk about the amazing things of 2017 last.

This year, my Aai (Indian grandmother) passed away. It was very sad, even though she died four days short of her 92nd birthday. She was quite ill, and she hung on for a long time. People have told me that grief is a funny thing, and I only truly understood it when my Aai passed. I did not expect to be so grief stricken, but after the memorial I was paralyzed by grief.

This year I also had some terrible falling outs with friends, which was quite devastating. I have learned though, that I cannot give anyone the permission to treat me badly.

The amazing things of this year though!! I finally got the Vagus Nerve Stimulator inserted, and I am happy to say that it is controlling my seizures very well! The last time I saw my epileptologist and VNS specialist we only had to turn it up a hair. I was also able to move in with my now fiancee! It is everything that I could ask for!

Ultimately, despite some weird things, 2017 was amazing! I have an amazing partner, family, and friends, For that I am truly grateful!

What are you grateful for? Happy New Years!

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 😉

How Fashion Empowers Me

Hey BB’s,

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I LOVE fashion. I watched What Not To Wear with Stacy London and Clinton Kelly as I was growing up. More recently, I have watched Love, Lust or Run with Stacy London.  I love make over shows!! Although, I have had to explain to countless friends that make overs aren’t to change a person’s look, it’s to accentuate their best features which they may have been covering up.

in Love, Lust or Run, Stacy London works primarily with women, and helps them morph into a different look so they are not held back in their lives with whacky outfits.
I am by no means a model. I am 5’5 and have an average body weight (that’s another topic for a different day).

I feel strong in cute clothes and my wheels go spinning when I think of how I can pair an outfit with different accessories that I come across. I love experimenting with my clothing, but if you were to ask me to describe my style I would say it’s “edgy chic”. To me, clothing is a way of expressing who I am.  Especially with the ongoing epilepsy, it gives me a confidence boost when I am wearing an outfit that I paired together. All of my looks are very intentional, and I gain inspiration from people I see in coffee shops, grocery stores, you name it.

I love fashion because it is always changing. I also believe that anyone can look amazing at any age, shape, or size. Fashion says “Here I am! I care about how I look and present myself to the world.” It is my way of saying “Yeah I have a chronic illness but I am not giving up on myself! This week has been hard with regards to getting out of the house, but baby steps! I feel and look great today! I made it out!


Sita & JoJo