"Dear Epilepsy" A Letter to the Criminal - Day 8 WEGO National Health Blog Month

Day 8 Nov. 8th WEGO National Health Blog Month

Prompt: Write a letter to your illness.

 

If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM

Dear Epilepsy,


I'm truly confused about where to even start with this letter. Honestly, if I met you in person I don't even know what I would say. I probably wouldn't say anything. I would just kill you and get you off of this earth so you can no longer torture or kill anyone. Saying that, I guess this is more like writing a letter to someone who killed you. I can say that I forgive you all I want, but I don't.

Who are you to think that you have the right to crawl into our bodies and take us over the way you do? No one gave you permission - But really, who would? You've taken beautiful memories and either ruined them by embarassing seizures, or stolen them completely through memory loss and brain damage. Now, it's true that no one should be embarassed by you. We didn't ask for you and you do this crap all on your own with no help from us. But people with you can't pretend like we aren't slightly embarrassed sometimes. I'll be the first to admit it.

What makes you think that it's okay to kill? Why do you have to make us live each day worrying about SUDEP or status epilepticus? I hardly ever sleep with a pillow these days in fear that I'll suffocate from one of the tens and twenties of seizures I have in my sleep every night. I go nowhere without my Ativan because I know you'll try to spring status epilepticus on me like you always do.

You didn't make me strong - I made myself strong on my own. You are simply what I stepped on to become who I am today. Therefore, I hate you with everything in me and I will not pretend like I don't. We all hate you, and we're coming for you. Hurting your feelings? Well, I don't care. I hope you feel depressed, insecure, embarrassed, scared and plain angry. Because all of us feel this constantly thanks to you.

You're probably firing up in my head right now, angry that I am writing this letter. I know you well and you seem to hate me most whenever I use a computer. So let me make this easier for you to understand; I am writing this letter simply to tell you to run, and run fast. Why? Because the rest of the world and I are coming to get you and make you a thing of the past. I want my great children to learn about you in school, but I want them to learn about the day you DIED. The day WE KILLED YOU. And that day is coming soon. So enjoy your sick, twisted fun while you still can because I am ripping you out of my head in a month and a half, and the rest of the world is going to banish you completely when we find the right poison.



Screw you,

Mandy Krzywonski

To KILL this criminal, Epilepsy, CLICK HERE AND DONATE TO HELP!!!

It Heals - Day #1 WEGO National Health Blog Month

WEGO National Health Blog Month

Day #1 Nov. 1 - Why I Write About My Health

If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM





Heart

[hahrt]
noun

Definition: Something that many doctors - including their so-called answers - often lack.

"Mandy, why do you write about your health?"

"Good question," I think, as I rub my stomach. Tonight was Halloween and I indulged a little too much on candies. Put my body into shock after the last two months of strict dieting. I don't think my body knew what to do as it was re-introduced to Snickers bars and just went into full-on shock.

Back to the topic (I tend to lose track easily - sorry!). Well, back when I was struggling to find answers, I truly wished that someone out there was a blogger like myself. I searched the internet daily for a girl out there somewhere (anywhere) my age, going through the same things, who wrote blogs that had answers... But mostly blogs that had heart. Sadly, I didn't come across one that had the heart I was looking for. Yes, I found several. And don't get me wrong - they were fantastic. But I found no blogs that spoke to the younger crowd just as well as the older crowd. After all, I was only 16 when I was diagnosed.

When I write, I write about things that I know others probably want to hear. Epilepsy is a disorder (part of me wonders if it should just be called a disease - it definitely feels like one. Does anyone else wonder if people would take Epilepsy more seriously if it was called a disease?) that currently has NO cure. There are so many types of Epilepsy, seizures, and syndromes involved with Epilepsy that our world needs hundreds of cures. Just as a child goes door-to-door on a mission to fill their pillowcase with as many candies as possible, we are searching for as many cures as we can get our hands on. But we are also on the lookout for answers, and often our answers are as simple as "I understand - that happens to me too".

Have you ever noticed how a child will cry until their mother kisses their "boo-boo"? (Even if it is an invisible one, or doesn't truly hurt at all) And when their mommy finally kisses this "boo-boo", th child suddenly stops crying with only one kiss. What this tells me is that stress can be relieved when you have another person to confide in, or a person to comfort you in your time of need. Unfortunately, I cannot be there for every single person who reads my blog posts individually and personally, but I hope to reach as many people as possible and offer some sort of comfort when they read my articles. The kind of comfort and support that makes someone yell "Honey, come read this! This girl has the same problem you do!".

Truthfully, I am still looking for answers myself. I am still struggling with seizures every single day of my life. I never found that magic pill, or outgrew my Epilepsy. I still look to the sky every now and then and ask God "How much longer do I have to go on living this way?"  I still pound my fist against the table when I missed out on a great night with friends because they were out too late, or had to skip out on the haunted house today because of the strobe lights. I am scheduled for brain surgery in January - only two months away... About 60 days. I am scared out of my mind, just like every other person suffering with seizures. Therefore, blogging offers a stress-relieving benefit to me as well.

This is why I also encourage many others to be their own advocate and talk about Epilepsy. Not only can you help others by educating the world and getting the word out - but you can also improve your quality of life by relieving your stress of feeling alone. You can connect with others just like yourself all around the globe, and even in your own area. You can learn new things, talk about your personal issues, learn how others cope, and help others cope. God gave us brains and mouths for a reason, right? (And fingers... to type!!!)

Every time a fan sends me mail, comments on one of the Facebook fan pages, or leaves a comment on a blog, I feel less alone. I know that there's just ONE more person who is feeling how I feel. I become less alone every few hours as these comments and messages come in. And boy - the pictures! Seeing the faces of others who feel the way I do is even better. Not to mention that I can see the faces of those who I have helped.

I'm probably going on forever, so I will give you a short answer that hopefully sums it all up:

It heals.

It heals my hurt to talk about my struggles. It heals those who feel alone. It heals those in need of answers. It heals those who feel mistreated.

I blog to empower, uplift, and help others overcome the hole that Epilepsy can't seem to stop digging for our community. And although many of us have not found our cure for the seizures, we can find the cure for our broken hearts and minds. Blogging is my form of helping myself and others heal.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Happy November, my loves!!! Epilepsy Awareness Month is finally here - so wear your purple and remember you can NEVER wear enough of it! Nail polish, t-shirts, pants, socks, and even hair dye! Let's make a difference!!!

ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!!

 

EpilepsyBlogger Fan Page

(EVERYTHING EPILEPSY!)

Epilepsy, A Love Story

(For mothers, fathers, aunts, uncles,

grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,

daughters, sons, step-daughters, step-sons, friends, best friends,

wives, husbands, couples, and so on! Even singles!!!)

 

EpilepsyBlogger's Words of Hope for Epilepsy

(Hopeful words, videos, music, and more to brighten up your day!)

 

 

Epilepsy Support Group on Facebook

Loved ones of those with Epilepsy also welcomed.

Topics posted each week by Mandy (EpilepsyBlogger).

All ages!

God bless,
Mandy Krzywonski
(EpilepsyBlogger)

Happy Purple Day!!!

To all of my Epilepsy family... HAPPY PURPLE DAY!!! As much as I would love to write one of my famous long blog posts, I am sitting here with a laptop that has a dying battery. Not just the regular draining of the battery life, but it's actually malfunctioning. So I have to use my time wisely before my laptop gives out completely!

Epilepsy is My Gift

So I wake up at 3:00 in the morning. My inbox is filled with lovely e-mails from all of my friends and fans, therefore my phone is BEEP, BEEP, BEEPING me awake! I'm reading through and I'm fascinated. There's e-mails from all over the world. People in Malaysia, Russia, Germany, and even places I've never heard of. I wonder to myself, "How are they even able to access internet in these places?!".

So I'm smiling to myself, reading all the messages, when one new one suddenly comes in. I open it up, and my smile quickly flattens. Someone asks me "How dare you say that Epilepsy is a blessing to yourself? Epilepsy is hurting people, killing people, and making people just suffer in general. You should be ashamed of yourself, saying that."

Married... with Epilepsy: Tiffany & Chris - Part Two

Click HERE to read Part One by Tiffany, with Epilepsy.

By: Chris

Introduce yourself and tell us about you and your wife, Tiffany!

My name is Chris Kairos. I’m a follower and disciple of Christ, and I try to the best of my human ability every day to live by and exemplify His teachings. I’m 27 years “new” and am a Graphic Designer/Entrepreneur, as well as a musician, with a huge heart, a good sense of discernment and a constant thirst for knowledge. I also definitely enjoy downtime… Relaxing and being able to just simply enjoy living whenever possible. 

Interview with Eric Miller, founder of Candlelight Concert for Epilepsy Awareness

By: Eric Miller 

Hello Eric! I’m so glad to have you for such a special interview.    

Thank you Mandy. And thank you for all the work you do in terms of blogging, Facebooking and raising awareness. It’s truly wonderful and inspirational.

Thank you, Eric. That means a lot to me. So I understand that your wife, Carolina, passed away in August due to SUDEP. How have you been coping? What have you been doing since then?   

Married... with Epilepsy: Tiffany & Chris - Part One

Chris (Left) and Tiffany (Right)

By: Tiffany

Introduce yourselves!

My name is Tiffany Kairos. I’m married to Chris Kairos, a graphic designer and musician. I am the founder of The Epilepsy Network (TEN). To check out The Epilepsy Network (TEN), visit FACEBOOK: http://www.facebook.com/theepilepsynetwork and the WEBSITE: http://theepilepsynetwork.com

Millions of Small Voices

     

           It's October, and November is nearing. The U.S.A. and Canada's National Epilepsy Awareness months. What are YOU doing this November to show your support for Epilepsy? Yes, I asked YOU. The reader, at home, on the computer in their pajamas. What are you going to do to make a difference?