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.

 

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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)

Margo's Footprints

Happy Monday everyone!

I am so honored and just downright excited to be a part of this interview with such a phenomenal young woman. Only 12 years old and already making such a difference in this world for the sake of Epilepsy, and all those suffering from it. Many people do not understand what Epilepsy is, what to think of it, or how to help someone in case of a seizure. And unfortunately, some people even discriminate against people with Epilepsy. But this young woman is taking the reigns of her illness, and using it to educate the world and spread hope to those around her. She sees a purpose for her illness, even at the young age of 12, and intends to leave footprints on the hearts of everyone she meets.

So, without further ado,

meet Margo!

"My name is Margo and I created Margo's Footprint to raise Epilepsy awareness and to raise money for research and development. I have named my foundation, Margo's Footprint because this will be the footprint I leave on this Earth (after my long, active, exciting life, with or without Epilepsy)."

Hello, Margo. Please tell me a little about yourself!

Hi my name is Margo and I am 12 years old. I am going into 7th grade. I am the youngest of three. I have three dogs named Marley, Zelda and Tucker. I love to hang out with my friends, cheer and dance. I plan to learn to play golf and tennis.

I understand that you have Epilepsy, Margo. What kind of Epilepsy do you have?

Right now my doctor at Mayo Clinic is telling me I have Eyelid Myoclonia with Absence seizures. You can also call it Jeavons Syndrome. My family, doctors and I just call it Absence Epilepsy. At first my usual Epilepsy doctor said I just had a regular seizure. But I have a super rare case of Epilepsy. Mostly some people are just scared or nervous so they can have a seizure and some people can have a panic attack. But they did more researching and found out it just wasn't a seizure and I had Epilepsy and that when was everything started.

So when were you first diagnosed with Epilepsy?

I was first diagnosed with Epilepsy when I was in 2nd grade going into 3rd grade. I had no idea what was going on until I got to about age 10-12. They tried everything but nothing worked. I even remembered when I was taking an orange pill and the kept on adding more and more. It was helping but not that much. Not enough for me to forget about my seizures. I also remembered it because I had to cut the pill in half and I accidentally cut my left hand between my thumb and my pointer finger. Then I started taking a blue and white colored pill and it was awesome. But one bad thing it had was birth defects. So I took other pills but right now I have no idea what I am taking. My family is saying that it is working but I don't know if it is or not because it just seems all the same to me.

Do you remember your very first seizure, Margo?

Yes, I do remember my first seizure. (That is when we found out I have epilepsy. It turns out that my eye fluttering that my parents had been asking experts about was absence seizures. I had been having them since around two years old, but no one could tell my parents what they were.) I was in 2nd grade going into 3rd grade. I was at my grandparents house on the driveway. I was looking up at the clouds in the sky with my uncle Kyle. Next thing I saw grass. And I was happy that I landed in grass. I really don't remember what happened. I just went straight down into the grass and had a seizure. Now I know when I am going to have a seizure. I can now warn people before I have one. It was kind of crazy because before I had my seizure they were talking about how my grandparents had a neighbor that was a doctor. They told me the neighbor took me to the hospital. Then I woke up and said "Where am I?" I even remember I was in a purple room hooked up to wires.Then we went back to my grandparents house my mom made me mac and cheese and made sure I was back to being me!

This is a picture of Margo around the time that she started showing her very first signs of Absence seizures. Her eye-fluttering seizures were considered to be facial motor tics until the age of 10 1/2 when further testing was done and she was finally diagnosed with Absence Epilepsy. In the fall of 2011, upon visiting Mayo Clinic, Margo was diagnosed officially with Eyelid Myoclonia with Absences, also known as Jeavones Syndrome. Margo is still searching for her cure.

How do you feel knowing you have Epilepsy? Does it bother you?

My Epilepsy does not bug me at all. I don't know when I am having a short one (Absence) because it is just for a couple of seconds. Sometimes I will know when I had a short one. I don't care because I know I am just being me!

What do others think about your Epilepsy?

My teachers keep track of every day I am having one or if I am having a long Absence one.  My friends never judge about my Epilepsy because everybody has their own things or differences.  My family supports me. Mostly my parents but my brother and sister support me too. Out of my sister and brother my sister supports me and helps me the most. I don't know what strangers think about it because I don't know them but one time I had a short one (Absence) and the stranger looked at me and smiled even though I didn't do anything, but I guess maybe he knew what it was.

Have you ever been treated unkind because you have seizures? If so, how did it make you feel and what happened?

I have never been judged and if I was ever judged I think it would be in a good way. Most people have know idea whats going on.

Here is a picture of Margo speaking at a women's conference.

Well, Margo, I understand you do some charity work for Epilepsy? Can you tell us all a little bit about what you do? 

I go around talking to different groups about Epilepsy. I educate people about what Epilepsy is.  What it's like to have Epilepsy, what to do if someone you are with a has a seizure, and how they can help. Of course, I also talk about my foundation, Margo's Footprint. I also have a couple fundraisers.  I have blank note cards made from part of a painting of made in 2nd grade. I also have a glass jar contest. I have glass jars with my logo on them. Then I have groups compete for raising the most money in each jar. The money goes to the National Epilepsy Foundation. I am thinking about giving the next quarters money to the research project my neurologist is doing through our local hospital.

Margo's Footprint logo. Margo decided on this logo because she wants her charity work to be the footprint she leaves on this Earth.

When did you start your charity work?

My mom helped me create Margo's Footprint last year, after I had a Grand mal (Tonic clonic) seizure during gym class on the track.  Lots of my classmates were there.  I figured it was a good time to start answering questions.  I knew lots of people had questions and were probably too afraid to ask them.  That they were probably afraid of embarrassing me and upsetting me if they asked.  I don't mind when they ask, as long as they are being nice about and really just want to know more.

How does the charity work make you feel as a person with Epilepsy?

Creating Margo's Footprint and speaking to people about Epilepsy makes me feel better about my Epilepsy.  It makes me feel like there is a purpose to my having Epilepsy. It gives me a little bit of control over it, because I'm doing something about it.

Here are Margo's blank notecards she sells to raise money for Epilepsy. The cover of the notecards features artwork she created as a child. Aren't they just adorable? A second version of these blank notecard is also now available.

Do you think other PWE's (people with Epilepsy) should do charity work for Epilepsy as well? Why or why not?

I think that if they want to they should.  The more people that know about Epilepsy the better. I think it's important that people know what to do to help if someone has a seizure. Too many people still think that you should stick something in the mouth of someone having a seizure or that we can swallow our tongues. I also think it's important that people realize that it does not mean we are stupid or different. Things like that. I hope that I can always be helpful and raise money for research in epilepsy. I have found by going through this that I love to speak in front of groups.  If I had never had Epilepsy, I may not have ever known that.

These are the glass jars Margo uses for her fundraising contests. She has large ones for people to put out in their offices or places of business, and small ones that fit in cup holders of a car and are great for collecting everyday change.

If you could give advice to other PWE's your age about living well with Epilepsy, what would it be?

1. Surround yourself with friends that support you. If you have a friend that isn't supportive, they aren't your friend and you should find someone who is. 

2. Be sure to educate your friends.  They more they know and understand about Epilepsy, the less scared they will be.  Also, they will be more ready to help when you need them.

If you could give some advice to other PWE's your age who want to do work like you, what would it be?

Give it a try. You have nothing to lose. You might find out something really cool about yourself!

Thank you so much for participating in this interview, Margo. And thank you to your mother Michelle for being so kind and understanding through the publishing process. God bless you both!

Click HERE to visit Margo's Footprint today and learn how you can help Margo and leave your footprints for Epilepsy as well!

My Epilepsy Makes Me Beautiful

This is a picture I took and added my thoughts to for my friend Tiffany at The Epilepsy Network while I laid in the hospital. In pain, with the taste of blood on my tongue from a seizure, I said some words that may shock your average PWE... "My Epilepsy makes me beautiful".

It's a bold statement. But, if you agree, please take a picture and add those very words to it. Send the pic to MandyKrzywonski@EpilepsyBlogger.org and see it on this post!

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."

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?