Category Archives: Blog Feature

Blog Feature, Living with Epilepsy

I’m a 27 Year Old Woman who Still Doesn’t know what the f*ck to Do

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confused girl

 

Hey guys! I am back! A little tired, yet I have wanted to talk about this topic for awhile. Without knowing me, just based off of the title? Would people call me lazy? Yup. Am I?
Nope.

I had my plan all figured out when I was ten, and picked up that month’s edition of TIME magazine. I am in the generation that over diagnosed its’ students with ADHD. Autism was still new and neurologists/behavioral psychologists were still investigating it. This edition of TIME magazine profiled an 8 year old boy, who, (my ten year old brain understood) that he perceived and interacted with the world in a different way than I did.  I was fascinated. From then on, I decided to become a social worker to work with individuals on the Autism spectrum.

I have been able to work with individuals on the spectrum (Asperger’s, before it was removed from the DSM IV). The students I worked with taught me so much, and I hope that I taught them a thing or two. This was my driving force to obtain my degree in social work.

But then my seizures came back, hard core. I graduated in 2014, but was still sure I would be able to work with Young Adults with Autism. My dream job was to work in a group home, but with all the requirements of a Class 5 driver’s license, that left me out of the running for many job opportunities.
I don’t know if I still have that social worker edge to me. I have considered becoming an Addictions Counselor, a Registered Massage Therapist becoming an aestheticism, public speaker, writer…..dare I say more??  Someone told me that she had a hard time figuring out her purpose…but when she did it all clicked into place….and that it would be the same for me, too.

I’m still lost….and nothing is clicking yet. Hopefully with the Vagus Nerve Stimulator coming up this week I will have more energy and zest for my passion (whatever that is!)

Happy Canada Day and Early July 4 for my friends in the States.

Lots of love,
Sita & JoJo

PS I have only had ONE cold brew since quitting coffee!

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Blog Feature, Living with Epilepsy, Mental Health

The Isolation of Epilepsy

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chronic-illness
Hey friends,

I hope you had a good weekend. My weekend was off and on. It started on Friday when I found out that there were cuts being made to the Epilepsy Clinic I go to and that my psychologist won’t be there anymore. I hugged him, and left his office absolutely devastated. It was a weird mix between devastation and seething anger. It was a stormy day, so I sat in the Starbucks attached to the clinic for awhile, and then braved the cold of the storm.

I  soon realized that my anger distracted me- I ended up taking the wrong bus and then hopped off and went into a Chapters (aka Barnes and Noble). I picked up Brene Brown’s newest book, Rising Strong, and then hopped on ANOTHER wrong bus. GOOD HEAVENS!

I finally hopped on to the Skytrain and found that all of my pent up emotion was starting to come out in small seizure like bursts. I was sitting down next to a dude, and then I leaned to my left ON TO HIM and started to seize. It was a short seizure, and I embarrassedly explained to him that I have seizures. Thankfully he took it well.

That evening was a mess of more seizures. Today I lay in bed on a Sunday evening, where I slept soundly until 3pm. Today I have not left my house. Now one thing is very clear to me: Epilepsy is one hell of an isolating condition.

It is easy to not leave your house in fear of a seizure. This is for injury or for fear of embarrassment. To look like a fool. An outcast. You look ridiculous. All of that attention was not warranted when you toppled over. You just want to be normal in the world.
Even if you WANT to be part of the camaraderie that life has to offer, you might be too ill to jump up and join in. I am an extraverted person, so this can be very hard to take. I miss my friends. I stand by the river and watch.

This. This is the Isolation of Epilepsy.

Blog Feature, Living with Epilepsy

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

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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

Blog Feature, Living with Epilepsy

Angel Wings Foundation: Support Homes to Help People with Epilepsy

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Hey friends! Recently, Becki Flader of the Angel Wings foundation reached out to me asking if I wanted to contribute to their blog. Let me back up a little. Angel Wings Foundation is a vocational home for people with Epilepsy so they are able to become integrated into the community. I think the idea is brilliant, because many adults cannot live on their own and need consistent support due to their seizures. Angel Wings Foundation was started because Becki’s little sister has Epilepsy. Check out their story below, written by Becki’s mother, Debbi Flader, Board Chair. Their story is touching, and furthermore their mission to action is even more admirable. If you live in the United States (specifically Illinois) this might be perfect for you. Contact info is at the bottom.

The Beginning

It began on February 12, 1992, it’s unforgettable. Noel was a happy, healthy 8 year-old, outside playing and enjoying the warm February school holiday. That day, she came into the house crying and complaining that her “hands were falling.”  What started out as a “feeling” wound up defining our lives–mouth twitching, hands feeling numb, difficulty in school, things changed forever.

We started with our primary care physician who sent Noel for an MRI, which showed no abnormality. Primary care referred us to general neurology at a community hospital. Noel was introduced to her first of many EEG’s, no abnormality. How could it be that every diagnostic test performed showed absolutely nothing, yet Noel’s little body was twitching for up to eight hours per day? As a last resort, after many sleepless weeks, we brought our darling daughter to Children’s Memorial where she was admitted for two weeks. She went through spinal taps, EEG’s, MRI’s in an attempt to determine the cause of the relentless twitching. She was started on loading doses of two anti-seizure medications and was constantly nauseous and feeling loopy. Becki, who is two years older and Ryan, who is 18 months younger, struggled as they witnessed their sister in such dire straits. Finally the diagnosis, Rasmussen’s Encephalitis, a catastrophic form of epilepsy that produces up to hundreds of seizures per day and does not respond well to therapeutic treatment.

The Surgery

On November 4th of 1992, Noel was admitted to Rush University Medical Center for a brain biopsy and multiple subpial transection, a surgery performed in attempt to break up some of the seizure activity. Watching our baby girl being wheeled away and knowing what was in store for her was unimaginable. How could our perfect family be impacted on such a great level? The surgery went well, although the seizures continued. Since 1992 Noel has tried just about every type of medication, Vagal Nerve Stimulation, plasma pharisis with IVIG, all in an attempt to control the debilitating seizures. Noel missed an entire year of school and struggled for years due to the ongoing daily seizures.

The seizures continued

By 2000 it was evident that the epilepsy was winning the battle. The seizures have become so violent that they throw Noel to the ground without warning. She’s endured many traumatic brain injuries and has lost all hope of living an independent life. Noel uses a wheelchair to allow a minimal amount of independence but the seizures continue. She needs constant companionship to ensure her safety.

A plan for the future

Over the years our family has supported Noel, emotionally and physically, attempting to provide a good quality of life in spite of the challenges that epilepsy presents. In 2012 we decided that Noel would need supports for the future when her dad and I are too old to care for her. Residential services in Illinois have up to a fifteen-year wait list, that’s simply unacceptable.

Angel Wings Foundation

We decided to create a non-profit designed to provide residential services for adults with epilepsy and offer residents educational, social and vocational opportunity. Angel Wings Foundation is creating homes; warm and loving homes with supports in place so that individuals with epilepsy can live life to the fullest, make choices based on their interests. We’re excited about the future and intend to build many homes; over 130,000 people in Illinois have epilepsy and 30% never gain adequate seizure control in spite of all available treatment options. The need is great. Noel is not alone and Angel Wings is dedicated to enhancing the lives of those affected by epilepsy and allow them to reach their full potential by living independently in the community.

Epilepsy may be winning the battle but we intend to win the war.

To make a donation or to read more about Angel Wings Foundation please visit www.angelwingsfoundation.net

Blog Feature, Living with Epilepsy

20 Facts About Me- 30 Day Blogging Challenge

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Hey everyone! So I am on day 2 of the 30 day blogging challenge and this one might be a toughie. I am not even sure if I can think about 20 facts about myself. Oh well!  20 facts about me! Okay, here goes:

1. I am right handed, but sometimes still hold a cup in my left

2. I watch more You Tube than Netflix

3. The majority of my clothes are prints

4. I am always freezing cold due to Reynaud’s Syndrome

5. I am obsessed with Owls and they are my spirit animal

6.  I have never once considered disabling my Facebook account- I am a real social media addict when it comes to stuff like that.

7. I got my first tattoo last year and I already have plans for a second.

8. I always bring my own yoga mat to yoga class

9. Even though I am 25 I still own a bunch of stuffed animals and still want more.

10. I have a degree in social work and a minor in women and gender studies

11. I am a huge dork and I’m not afraid to admit it 😛

12. I love giving and receiving hugs

13. I hate taking my anti seizure medication

14. It’s hard for me to hold a grudge

15. I feel tired all the time, so I call myself permatired

16. Earl Grey tea is my favourite type of tea, but I am always happy to experiment and try new ones.

17. I want to learn American Sign Language this year

18. I don’t believe in diets (Such as the cabbage soup diet, etc. I DO believe in eating healthy!)

19. T0 contradict number 18, I loooove chocolate

20. I am a perfectionist, and I am working on becoming “perfectly imperfect”.

Blog Feature

Looking Back on 2015: A Reflection

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Hey friends! Happy New Years! I can’t believe it is a brand spanking new year already! 2015 was so crazy I can barely remember what happened. (I blame the amount of seizures for the poor memory).

My Epileptologist said that my seizures have decreased from 50 a month to 30 a month which is a big triumph. I still seize a lot though and am constantly tired which is a bit of a drag. My depression has gone away thanks to some medication which I am very thankful for. I wish that I did not have to take so much medication, but if it semi-controls my seizures then I will go with it. I also battled very severe depression which landed me in the hospital for a night which was the most terrifying night of my life. Thankfully I finally agreed to take anti-depressants and my depression has gone away.

Despite the depression, 2015 was a lot better for me because I feel more involved in my parent’s city, and I have been making many new friends. Making new friends was a struggle for me, mostly because I can’t work and am not in school.

It is wonderful though because I have made some new connections through my boyfriend and a childhood friend has reached out to me after 10 years of not seeing each other. That really meant a lot!

In addition to making new friends, I went on quite a few trips. My aunt lives in Kelowna, which is in the Okanagon. I took the Greyhound up to see her both times. The trip to Kelowna is about 6 hours, but I had a great time on the bus. When we made a stop here and there I would run over to the Tim Horton`s for a tea. Kelowna was wonderful too- haha. My Aunt is super active so we went hiking, bird watching, and did a couple of yoga classes. My Aunt has way more energy than I do, so on my second trip in September I needed to be hospitalized due to uncontrolled seizures. I wasn’t listening to the little voice in my head that said “I can’t do this! I am too tired!” That was a foolish mistake on my part, but every mistake leads to a teachable moment.
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IMAG0360 (1).jpgPersonally, I feel that I have learned to be more spontaneous and I am not as afraid of judgment from others. I am trying new things, such as yoga which is a big step for me. I was always turned off of it because I didn’t like the idea of an instructor touching my hips to adjust my stance. No, no and no. I feel like this has been a big year of growth for me.

Finally, I was accepted into TedxStanleyPark! It was truly a dream come true.

Love you lots!

Blog Feature, Living with Epilepsy

Sunshine Blogger Award

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Hey everyone! Thank you very much to Astrid of  http://astridswords.ca/2015/12/07/sunshine-blogger-award/ I have been nominated for the Sunshine Blogger Award. I couldn’t be happier, so thank you so much Astrid.

sunshine-award

The rules for accepting the award are as follows:

  • Thank the person/people who nominated you
  • Answer the eleven questions from your nominator(s)
  • Nominate eleven other bloggers and give them eleven questions

    The rules for accepting the award are as follows:

    • Thank the person/people who nominated you
    • Answer the eleven questions from your nominator(s)
    • Nominate eleven other bloggers and give them eleven question

     

    Questions to answer:

    1. What do you love best about blogging?
    2. What do you love most about yourself?
    3. Do you favor time alone or time with others?
    4. What is your favorite thing to do in life?
    5. What is your favorite quote?
    6. What do you most admire?
    7. What is your greatest fear?
    8. How is it best for a person to portray individuality?
    9. Do you have a favorite environment for work?
    10. What is your greatest accomplishment?
    11. What is your favorite season?

 

My Answers!

Questions to answer:

  1. What do you love best about blogging?
    I love being able to create a community around me, and learn about other people’s thoughts and experiences. I also LOVE writing, so I feel like it is my creative outlet.
  2. What do you love most about yourself?
    I love that I am a very thoughtful and kind person. I tend to put others ahead of myself, and am able to adapt my personality to other people’s personalities.
  3. Do you favor time alone or time with others?
    I love love love being in a group of people. I am what you would call a chatty extrovert. However, sometimes I get run down and it’s nice to just have some thinking time by myself.
  4. What is your favorite thing to do in life?
    That is a very difficult question to answer because I love so many things in life. I love sunny days, and rainy nights. However the best thing would be to dance to upbeat music and just not have a care in the world about what’s happening.
  5. What is your favorite quote?
    My favourite quote would have to be “The Journey of a Thousand Miles begins with a single step”- Lao Tzu. Because it’s true. You can’t go anywhere without taking that first step in life.
  6. What do you most admire?
    I admire people who are able to calm themselves without getting insanely stressed out. People who can handle adversity like a champ and go, step by step, to reaching their goals.
  7. What is your greatest fear?
    What is my greatest fear? Mice. Oh my gosh they were not meant to scurry around so quickly. Aside from that, my greatest fear would be to not have a purpose in life. To not be doing anything to help anyone or  to not  have a fulfilling life.
  8. How is it best for a person to portray individuality?
    I believe that clothing is a great way for people to show their individuality. One of my best friends has taught me to be me, without caring what the world thinks. So through attire, and standing up for your own values are really big ways of showing who you are as a person.
  9. Do you have a favorite environment for work?
    I love working in coffeeshops. Other than that, I like having other people around, whether we are working in a team or someone else is just close by to say hi to on breaks.
  10. What is your greatest accomplishment?
    Getting my degree!
  11. What is your favorite season?
    I do love Winter because of all of the Holiday cheer, but I also really really love Spring because it is my birthday month and all of the new flowers are popping out of the ground.