Tag Archives: Epilepsy

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 http://www.epilepsy.com, “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

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

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,

Simplicity - Copy

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

Why I Wish All of My Days Could be my Best Day

Hey Boo’s

I have been frustrated lately because there was a big barometric drop in pressure last week, which triggered a whack load of seizures. Since I have had the VNS inserted, I have not had any massive seizures such as falling.

Last Thursday I had a pretty bad seizure in particular. I was on the phone with my partner and I started gripping the phone. She asked if I was still there, and then assumed we got cut off because she went underground. I heard her though, and due to rigidity, I fell off the chair I was sitting on. Ouch! Damn that hurt.

Seizures trigger a lot of mental health issues, such as anxiety and depression. Since I have it in my lucky cards to have Refractory Epilepsy, I am even more likely to have depression (which I do) and anxiety. Yay!

What makes me feel awesome though  is my clothing. Every night before I fall asleep, I plan my outfit. I am not the most practical dresser, so I might think of wearing a skirt when it has been raining all week. My fashion gives me confidence because I can say “Hello World! I am not feeling well but I look great!”

I know it’s unrealistic to expect every single day to be Ah-MAZING. As my coach Georgee told me, life has it’s ebbs and flows and if it was always up, we wouldn’t appreciate it so much. Such wise words! I am trying to get my a$$ back into gear, even though it’s hard with the correlation of mental health issues that come with epilepsy.

What gets YOU through the tough times??


Sita & JoJo

Living Chronically ill With Awesome Fashion

Hey guys! Boo! It’s almost Halloween!

-Friends are born,not made.- (1)It is fitting, because I’ve had a scary awesome revelation about what I want to pursue in my life.

Last weekend, I did a workshop called “Find Your Why”. Some of the principles are based off of  Simon Sinek’s thinking. -Check out some of his ideas here .The main idea being the golden circle. You operate from Why at the middle, then What and Where in the outer circles. If you think of it many of us operate from “what”. Through this workshop I learned that I wanted to empower women with chronic illnesses and make them feel amazing from the  inside out through fashion and vlogs. Wow!! I had been stuck in such a rigid idea of social work, that I hadn’t allowed my mind to wander.

Through my new business, CHRONIC FASHION, I will give style makeovers, photoshoots, and someone else to step in with hair and make up. I can also act as a coach, since I am a Registered Social Worker.

Even though I have been seizure free lately (YASS!) I totally believe that if you have an illness, dressing well can make you feel better about yourself!

If you want to follow my new business and see how it progresses, join CHRONICFASHION on facebook, and  ChronicFashion65 on instagram and Twitter!
Finally, what would you like to see as someone helping a person with a chronic illness through fashion? What would you want?

Lots of love,
Sita & JoJo