Tag Archives: Chronic Illness

Living with a Vagus Nerve Stimulator: Is it Worth it?

Hey BB’s

Living wih VNS Canva     This is almost the one year anniversary of getting my Vagus Nerve Stimulator implanted. A Vagus Nerve Stimulator (VNS) is like a pace maker, except for the brain. A little device is implanted right below the collarbone, on the left  and a wire is attached via the vagus nerve. (Which is on the left side of the neck). It is set to send little pulses at a rate that is determined by your epileptologist/neurologist. It can help to stop  a seizure, or make it less aggressive by swiping a magnet that you wear like a watch on your right wrist. I’m still waiting for someone to ask me the time as I look super rich by having an iWatch. Regardless, the pulses feel very powerful!

Is it worth it? For me, it was 100% worth it. I was at a point where my seizures were so frequent that my epilepeptologist bumped me up to Urgent, in terms of receiving it. There are only TWO doctors in the province that I live in that do it, so there was a bit of a wait, but it was worth it. My seizures have decreased a lot, and I can actually feel an aura now! I am travelling right now- and when there was a huge drop in pressure I was able to wave my magnet over the VNS device to help prevent from seizures.

The one thing that bothers me about the Vagus Nerve Stimulator is that sometimes the pulses run through my voice box, making it sound a little strangled. (This is clear proof from my Epilepsy Nurse who said she could hear a difference in my voice. I know tonnes of people think their voices sound different with no change, but there has been, my friends). It may not affect you, as you may not need the pulses turned up so high, It totally depends on case by case, and no one is a cookie cutter.

If a VNS is your best option, I would go with it! You never know how much it could change your life for the better. I know it has for me! My Fiancee has been able to stop seizures while I am having them, and I can prevent them if I feel an aura.

Lots of love,
Sita Gaia xx

PS- if you aren’t already doing so- follow me on me on Instagram @ joeyjo422 

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Advocating for BC Epilepsy Society

Hey bb’s!

IMG_20180427_114124_767

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!

Love.
Sita Gaia

4 Reasons Why Self Care is Hard

Hey bb’s!
I am sure you have heard about self-care, (especially if you have a form of chronic illness), and have been told to practice self-care. In my Social Work degree, the idea of self-care was beaten into us. But what is it? It is the way of taking care of yourself when you need down time or are feeling symptoms due to your illness. (ie Seizures, exhaustion, flare up, hard to walk, etc.)
self care.jpg1.You Feel Selfish
Taking time for yourself to recharge or just tell your partner or friends that you cannot do much one day feels crappy. It feels weird sometimes to say “Hey I can’t come out and meet you because I had a really bad sleep and pushing myself would be too much.” I am lucky that my fiancee is super supportive and understands that some days I can’t do too much.

2.You Miss out On Social Events
Sometimes when you need some good self care time, also happens to clash with social events that you were looking forward to. This year I missed my own birthday party due to Psychogenic Non Epileptic Seizures. I was super bummed because the majority of people were actually attending! It was for the best though, and thankfully it wasn’t on my actual birthday.

3.Sometimes you don’t know *how* to self-care
Prior to getting many seizures, I wouldn’t be able to tell you what is in my self-care toolkit. (Stay tuned to find out what they are!) It can be difficult to figure out what the best self care options are best for you. For a person with a chronic illness, it can vary greatly, as everyone has different abilities. Going for a short walk might be good for me but not so good for a person with arthritis who is experiencing a flare up.

4. Your Self-Care can seem “lazy”
if You need to rest in your home without doing much, it can feel like you’re being “lazy”. As a person who never, ever wants to be called or labelled as lazy, this is a very hard one for me. When I legitimately need down time, I wish I could have done more around the house, and it makes me feel bad when I haven’t pulled my weight when my fiancee comes home. Although she understands, I am very hard on myself, which drives me crazy.

I’m having a self care day, so I have been thinking about this a lot. I’ll be posting about my own personal self-care toolkit soon so stay tuned!

Love,
Sita Gaia xox

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!

Love,

Sita & JoJo

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

Hey Boo’s

woman-feeling-amazing-amongst-a-field-of-flowers
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??

Love,

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