Category Archives: Blog Feature

Blog Feature

Have You Fallen Into the Depression Trap?

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Halle-f*ing-luah! I made it out of the house! I have been struggling a lot with depression again as it has decided to loom it’s ugly head.
If you have never had any depressive episodes, first of all knock on wood immediately. In my talking with my mental health crap, everyone experiences it very differently.
my shoes.jpg
My depression is like a wet towel. It’s not cold, but very heavy. I mean, have you ever tried carrying around a sopping wet towel? Not too comfortable. At the same time, I don’t feel super happy or sad. I just can’t really feel anything. Ask me to meet you somewhere last minute? Forget it. It is very hard carrying my body around- and I think people feel this regardless of their weight.

My depression is a bit of a trickster. It tells me that no one likes me, and someone is ignoring me on purpose. It tells me I am alone, when in fact I have an amazing fiancee who works her ass off, parents who couldn’t be more supportive, and a brother who lends support from afar. I have friends who check in with me, and cousins I can talk to, plus extended family.

My friend Ty has been through the same stuff as I am going through, and when I was struggling to put on my shoes he said “I always know that I’ll feel better when I leave”. A mantra that I used in university popped into my head “I’ve done it before so I can do it again”. Like that, I managed to pop my feet into my ever so stylish if Kate Spade and Keds had a baby shoes, and grabbed the keys.  Oh My GOD! I made it! I probably sat there on the couch for ten minutes trying to decide whether to go out. I wanted the stimulation of other people being around, so naturally doing my writing in a coffee shop seemed ideal.

The world was a bit grey and gloomy out, but I was so proud to walk down the street. I just knew I wasn’t able to lie on the couch the rest of the day. (Even though my fiancee offered to get my blister pack, I wanted to take that task out of her day).

I know this will pass, and since I have been there before I know that for sure. So if you’re struggling, try and see a doctor (even a walk-in clinic) if you are able, and try to challenge yourself to what seems like the biggest barrier.

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Blog Feature, Living with Epilepsy

Dear Diary: Confessions of a Millenial

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Hey bb’s,

I 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.

Peace.

Love,

Sita & Jojo

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!

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”.