RIP For The Lives Taken by Epilepsy

andlelight vigil
Hey friends, I hope you liked my new category on fashion. Today I am a bit more serious though. I was planning on going to my Mum’s Unitarian church with her this morning, and I had set my alarm. I even planned my outfit!

My night was rough though and I ended up seizing all throughout the night. If you have ever had a seizure during the night it can be tough to wake up in the morning. I slept and slept, then ultimately I was able to wake to the morning sun. The first thing I said to myself was “Thank you for another day”. I was still mustering the energy to wake up when I got a text from my friend who is across the country. She told me that one of her friends had died from epilepsy. She proceeded to tell me how much I meant to her and how much she loved me. At first, it didn’t hit me super hard. Yes, it was ironic that I thanked the universe for continuing to give me another day. I have read stories about people who have died from Epilepsy, which made me so sad that it was hard to get through. I responded in kind and told her how much she meant to me and how much I loved her too.

Epilepsy is a funny chronic illness to live with. I know no other, but death is so possible due to falling in the shower and not “coming to” in time. You could choke on food if you start to seize while eating. I could go on and on. But I won’t. According to epilepsy.com, people can die of SUDEP (Sudden Unexpected Death from Epilepsy). I do not know the case of my friend’s friend, nor would I share it on here. If you are curious, SUDEP is “the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150. These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures.” (epilepsy.com)
Studies suggest that there is fluid in the lungs, or the person was found face down in the bed when they passed.

There is no known cause for SUDEP. This is tragic. Even though I do not know the friend of my friend’s, I couldn’t help but cry for them and all of the other people who have lost their lives to Epilepsy. It is always so sad to lose someone from the Epilepsy Community.  I believe that there needs to be more recognition for it and we need to hold candlelight vigils for them. I am lucky to be alive today, and I thank the universe every day I am alive, even if I am depressed or feeling shitty. So if you, your child, spouse, best friend, have uncontrolled seizures, just realize that it is very serious. On the flip side, thank life for every day that they are here.

Light a candle for a moment to remember those who have passed from Epilepsy. We are in this together.

Lots of love xox

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5 Simple Steps for a Fabulous Outfit

IMAG0796Hey guys! How are you? I would like to announce that I am adding on a Fashion section to my site. My life isn’t Epilepsy 24/7, and I actually have some hobbies and a life outside of it. hah.
One of my big interests is Fashion. When I was in my teens I used to watch What Not to Wear with Stacy London and Clinton Kelly. They taught me so much about fashion! Somehow I managed to retain that information, and without further ado, will unveil it to you:

1. Think about what part of you that you would like to accentuate the most. For me, it’s usually my waist because it is the smallest part of me. Everyone chooses to accentuate different aspects of themselves and I think that is totally rad!

2. Think about what colours look good on you. If you are fair skinned like I am, it might be best to veer away from colours like yellow and orange. It is always important though to try many options, because clothing looks different on you than when its on a hanger.

3. In turn, you don’t want to look like a rainbow. (Unless that’s your look!) It’s always great to pair colours with a neutral, such as black, grey, beige and sometimes navy blue works well.

4. What do you want to say to the world? Think about what your clothing says to the world about you. For example, I am wearing a plaid top with black pants, but it is paired with a cute head band and bracelets. I am also wearing a slight hint of lip gloss and mascara. This outfit cannot be mistaken for anything but girly, which is what I am.

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5. Don’t be afraid to try new things! Also, fit is always preferable over the size on the tag. What does that mean? For example, if you are usually a size 6, but a size 8 fits you better at a clothing store- don’t fret! Clothing companies make their clothes in all different sizes, so you could be a 6 at one store but an 8 at another. It’s not a big deal!

One Bonus Tip: Make the outfit YOU! With my bracelets and headband, it is no doubt me inside and out.

What are your fashion tips?? I wanna know!

Love you lots! xox

Angel Wings Foundation: Support Homes to Help People with Epilepsy

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

Day 3 of the 30 Day Blogging Challenge!

Hey everyone! Oh my god I am so tired I could practically collapse. But, as a good blogger I will keep plodding away and then get an early rest.
Today’s topic is “What is your favourite quote and why?”
This is super easy for me, because I have had the same favourite quote since I was in middle school. It is:

“The Journey of a Thousand Miles Begins with a single step”-Lao Tzu. 

This quote was tacked up in my small middle school in the library, and was impossible to avoid every single day. As I have gotten older, this quote has taken on a lot of meaning for me. Living with Epilepsy you need to take things day by day, by placing one foot in front of the other. It’s a long journey. No one said is was going to be easy, but it is definitely worth it. Having that mindfulness and allowing myself to have bad days, or be tired and over-socialized is okay! Humans were not built to be perfect, perky people all the time. Sometimes things we do wear us out. Some of us have more energy than others. It’s just the way life goes.

Love you lots! xox

20 Facts About Me- 30 Day Blogging Challenge

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”.

Looking Back on 2015: A Reflection

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!