I Will Destroy Epilepsy for My Epilepsy Family

So the hospital called two more times. Now I am going in at 5:30 in the morning for surgery. I decided to stay awake, write one more short post, finish packing and thank you cards. Getting so exhausted that it's not even funny, but I'd rather go into surgery tired because I won't have time to be so nervous.

Cramps are coming in more and more by the minute, so I know my period is going to start pretty much any minute now. Not happy that I'll be getting my monthly gift in the hospital during brain surgery. I am actually rather upset... But maybe that's just my hormones making me cranky?

Just got off the phone with my sweetheart. It was so hard to hang up... You know, I love him with all of my heart. And over the last few weeks I have realized that his love for me has truly grown. The way he loves and protects me is just... Unbelievable. Especially for our age and distance apart. I wish he was back at home right now, but I am thankful simply to be with him. The Lord has spoiled me with such a sweetheart.

I started to cry on the phone with him from the fear that has finally kicked in 5 hours before my first surgery. I realized this is happening TODAY. No more days to count down to. I told Rafael "Thank you for staying by my side through this. Your love has kept me so strong when I just wanted to fall apart sometimes. You're my best friend and I couldn't have done this without you". He replied saying, "Anything for you my love." Then we said our classic form of I love you that we say to each other each day and night:

"I love you," I cried.

"I love you more," Rafael whispered.

I sobbed and replied "Never."

"Always and forever." he said, bringing a smile to my face.

The boy always knows how to calm my tears. I wonder sometimes if he's an angel in disguise. Anyhow, I had to hang up because I refuse to keep him from his sleep. He has an education to achieve and I will always make sure he gets all the rest he needs to do so. So I held back my tears and said goodnight.

I am having faith that our good Lord is going to bring me through this surgery. I won't lie to anyone - I am scared out of my mind! This is no foot surgery or appendix removal. It's a brain, and it's a big deal. I contemplated chickening out, but I did a lot of thinking and a lot of praying. After that long process I realized that Epilepsy will always be a battle, but the cure we find someday is going to rely on us to be brave and make choices that don't seem so attractive.

So my sweet Epilepsy family, I am doing this for all of you. For those of you fighting Epilepsy now, and those of you who will fight Epilepsy later in the future. I am getting this surgery to help show you all that you can do it too, and that you can find success. I am claiming my healing from the Lord, and rebuking any suffering.

Death has been eating away at my brain for quite a while now with Epilepsy and making me suffer tremendously, but with our army of prayer warriors and the good Lord's blessing of an amazing brain surgeon and Epileptologist, death's meal is about to be put to an END. I love you all, and just know you are all appreciated and loved by this blogger and advocate. I may not know you personally, but I have a love in my heart and a great understanding of your suffering and I want to help you achieve your Epilepsy Success.

So please stay tuned to the blog and/or Facebook pages. My family will be updating daily and I will as well if I have the energy or feel well enough. Also, keep me in your prayers because I truly need my prayer warriors right now. Thank you for the love and support, and I am going to show you all that overcoming Epilepsy is possible with faith, love, hope and a little bravery.

Matthew 17:20
"He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you.""

See you all soon,
EpilepsyBlogger

P.S. - I have gotten comments and messages on Facebook regarding sending monetary donations and/or gifts to me. I was unable to reply to several due to privacy settings on Facebook. Therefore, if you would like to send a donation or gift, please e-mail MandyKrzywonski@EpilepsyBlogger.org for the mailing address.

9 Days, 3 Tablets, No Seizures

Brain surgery is now officially 9 days awake. So we're at a number less than 10 - this bothers me. But I'm more calm about it now than I was a week ago. I have a strong feeling this "calm" mood will change, but I'm enjoying it while it's here.

I got my Klonopin tablets today. The dose is 1 mg, three times a day. They are the Clonazepam ODT tabs, rather than the actual pills I had before in which I needed to swallow. I kind of like these because they work more quickly, it seems. They're doing an excellent job of controlling the seizures because I've only had one seizure along with three auras the entire day. This is amazing news. (I couldn't type that to sound more excited, right?)

These Seizures Won't Give Me a Break, Break, Break...

Today is one more of those days filled with seizures... And if it wasn't seizures, it's been a massive headache that could knock out an elephant. Surprised I even felt well enough to make my family some homemade peanut butter cookies (photo) and sit down to give an update. But I assure you all, as soon as I'm done writing this, it's back to bed for EpilepsyBlogger.

I didn't get too much sleep last night due to a lot of slight simple partial seizures. These seizures are less frequent and not as normal to me as others, so they freaked me out like you wouldn't believe. I didn't run upstairs to scare the parents, and did my best to relax until they passed. Finally I slept around 3:00am and if I had to rate my sleep, I'd say about an 8 out of 10 stars. So not too bad.

See You Soon

I said goodbye to my sweetie on the 14th of this month... And in only two weeks I have managed to come undone about a million times simply because I miss him so much. He's gone off to school 3 1/2 hours away, which isn't bad considering many distances are much longer. However, it feels like a billion miles because I can't see him anymore.

Our last three days together weren't how we had planned them to be at all. After taking my unexpected trip to Michigan, and a vacation a few weeks prior, it felt as if we had been cheated on time. The fact that our plans unravelled one by one, up until the time I hugged him goodbye, left both of us upset and wishing for more time together.

What's the worst to me is that I didn't get to share a slow dance with him at his going away party, or get to give him a real kiss him goodbye. My mind was too busy trying to tell my heart to beg my tear ducts not to cry in front of Rafael and his family. On top of his mum rushing him into the car to leave, it was too much for me and somehow I forgot to give him a real kiss. Instead, Rafael settled for a crappy kiss on the side of his mouth and the world's quickest hugs accompanied by "I love you". No other words, just I love you.

I knew inside that Rafael is a man and wanted to treat the whole night of goodbyes like a man would. No tears and no sadness. So I promised myself that I wouldnt cry the entire night. Definitely a challenge for such an emotional person like myself. For starters, I'm terrible with goodbyes. Secondly, I've been a cryer since the day I left my mother's womb, and haven't stopped since. I can find a reason to cry in even the funniest movie in the world - whether I want to cry or not... My heart doesn't care.

Somehow, by the grace of our good Lord, himself, I didn't cry. Even when he drove off into the night and left me alone at his own party... I didn't cry. I only cried when I got into my sister's car, closed the door, and put in my seatbelt. I guess I didn't want to say goodbye to the love of my life and have our last memory in his mind be depressing. However, when I cried in the car I couldn't seem to stop. The whole way home, as I walked in the front door, sitting at thr table, walking upstairs, in the shower, when I got out... I have never cried that way in my life! I felt unbelievably pathetic for that, too.

After I took a shower, my sister brought me a letter at the kitchen table that Rafael had asked her to give me when I got home. I completely forgot about it, but I had been excited to read it the whole night. However, as she carried the envelope to me I was scared to open it. So many fears that it may say something bad such as "I can't do this".

To my surprise, it was the longest, most heartfelt, and sweetest letter ever given to me by anyone in my entire life. I'd write it all out but it would take too long. He said he truly loved me and wanted to make things work. He said he would hold my hand through my brain surgery and anything else he could hold my hand through. He said he'd pray for my health and safety while he was away... Rafael said a lot of things. However, I think my favorite part was when Rafael said:

"This isn't a 'Goodbye'. This is a 'See you soon'."

When I read that, I actually smiled through all the tears. Because once again, Rafael managed to let me know that he is "for real". He reminded me that he'd be home again. Even if it isn't until Thanksgiving, or even if it isn't for a year next year when he goes to the Air Force Academy. It's all I have of him to hold on to right now, but it's more than enough because it is full of his love. That's all I need.

I'm putting it in a frame this weekend on my dresser so I don't ever lose it. Everytime I'm about to cry I find myself reading it and it stops the tears in their tracks. Amazing what a pen and paper can do when they're in the hands of someone who loves you...

A Love Like Frozen Peas

Tonight went a little different than I had planned. My amazing boyfriend, whom I absolutely adore, came over to spend some time with me. He will be leaving for college, 3 1/2 hours away, on August 15th. So I only have 17 more days to spend with him. Once he is gone, I wont be able to see him for months at a time. This is very stressful for me, and hard to think about. It's on my mind non-stop, because I love him so much. The thought of him being away for so long scares me.


I plan to drive up with my sister or father to see him for one or two days a month. Hopefully more if I have the time. He gets to come home for holidays and breaks, so all is not lost. This is just new and awfully scary for me. I'm sure it would be for anyone. But I'm proud of him. He's worked so hard to get into a good school and I know that this is going to be great for him. I'm happy for him and I will support him the whole way. After all, he supports me when times are tough.

We spent the night watching our favorite TV shows. (Caution, these aren't the best shows for anyone under 17 years old! But they are funny as can be, and we love a good laugh.) Workaholics, which we both love terribly, and Wilfred, a show that Rafael never gets tired of. I could say the opposite about Wilfred, personally, but what makes Rafael happy makes me happy too.

At that point, our night was going fantastic. Relaxing on the couch, cuddling, and laughing our butts off. Where did we go wrong? Well, we went wrong when we decided to play Dance Central 2. Dance Central 2 is a video game for the XBOX 360 Kinect. It requires you to watch the virtual dancers on the screen, and repeat their moves exactly for points. It contains colorful graphics and fast-beat music - not good for seizures, but we were living in the moment!

Don't worry, my seizure that you have been waiting for me to explain was not that bad. I had to hop out of one of our dance battles because I felt it coming. It was a less violent-looking seizure, but it was more violent on the inside. It gave me an awful headache, and knocked me out of reality for 5 minutes. I managed to do a good job at covering up the pain in order to have a good night with my darling.

How did he deal with it? Well, he ran to my side as I became dazed and confused and held me up. I remember feeling like I would fall, and he didn't let me. At the time, I was just thankful to have someone there holding me. But afterward, as I laid on his lap and he held frozen peas against my head... I suddenly realized something.

It isn't that I never knew he was sweet, and it isn't that he was a jerk to start with. Rafael has always been a sweet boy. A good head on his shoulders, loving, and caring. I just get surprised at his willingness to be with me, even through these nights. These nights when our fun comes to a huge STOP due to a seizure.

I think, "Rafael could have any girl he wants. He's handsome, he's in shape, he's smart, and I mean... Look at those muscles! He deserves a girlfriend who is fast-paced and can do anything and everything with him, without having to stop due to a seizure." And it makes me sad. I think about that a lot. But tonight he reminded me that there's so much more to love than being able to play video games, see movies, etc.

And I often ask him if my Epilepsy bothers him. You know what he says? "How could I stop loving you because of something little like Epilepsy? I love you for you. Just keep being you." And on nights like tonight, I don't even need to ask him. I just know how much he loves me by the way he sits there and takes care of his sick girlfriend with a smile on his face, thinking nothing of it.

So what did I realize?

I am so blessed to have him, and I am the happiest girl in the world, simply because he is mine. No matter the distance, no matter my health... Nothing can keep us from loving one another. Frozen peas seemed to help me understand that tonight, for the very first time.

We should all love selflessly. Whether it's sacrificing a night that could have been filled with fun dance moves to hold the one you love until the pain goes away, or smiling and making the best out of the little time you have left - even though you're scared, sad, and worried. We must have a "frozen pea love". (I'm still not eating them, though. I hate peas.)

And it's quite funny. When I apologized on the phone about how tonight went, do you know what Rafael said? All he said was "I'm just glad I got to take care of you."

I love you, Rafael, and God bless, my friends!
EpilepsyBlogger

Dating... with Epilepsy: Alexandra & Johnathon

Alexandra & Johnathon

Introduction

"Hello, my name is Alexandra Rouzier. I am 22 years old and I am as mixed as they come. My father is Swiss/German and my mother is Haitian. I feel the need to say this because most people think I am some type of Spanish. My hobbies include fashion, art, music, blogging, and any other creative outlet. You can check out my blog, FashionHankyPanky.Wordpress.com, by clicking HERE. Also, I just recently moved to New York to pursue my dreams of having a career in the fashion industry."

When did you have your first seizure, and what do you remember about it? 

"I remember having my first seizure when I was about 10 years old. It was after a really severe car accident I had with my mother. Til' this day doctors cannot tell me for sure if it was the accident that "caused" it. When I am sure it was. The seizures started weeks after."

When were you first technically diagnosed with Epilepsy, and what kind of seizures/Epilepsy do you have? 

"I was diagnosed with Epilepsy when I was 11 years old on July 1, 2001. I was first diagnosed with Tonic Clonic seizures, then Grand Mal, then Generalized Seizure Disorder. This was when they told me and my mother lets start watching her under EEG'S, MRI'S, and CAT SCANS, because they could not pinpoint where the seizures were coming from."

Describe the seizures you usually have.

"I usually have Grand Mal and Petit Mal seizures. The thing is when I have a seizure it is always Grand Mal and I always end up hurting myself in one way or another."

May I ask what medications you are currently taking?

"For a few years now I have been taking Keppra and Zonagran. Of Keppra I take 1500 mg twice daily and of the Zonagran I take 100 mg twice daily."

Do you find that there are specific things that bring on your seizures, or are they completely unexpected?

"Definitely sleep! When I do not get enough sleep, I feel very strange and feel as though I am going to have a seizure. It is just that feeling of vertigo at times. I occasionally have seizures due to lack of sleep. I just hate that feeling you get before hand."

What was your most embarrassing seizure?

"My most embarrassing seizure was when I was around 13 or 14 years old. I was taking a shower at my grandpas house and BOOM! I had a seizure in the shower. I fell so hard I broke the soap dish. He had to carry me out I guess, because when I woke up I was in the bedroom with a towel on. The embarrassing part of this was that my grandfather saw me naked. For a 14 year old this was dreadful."

Do you do any volunteer or advocacy work for Epilepsy? 

"I did a fashion show for the Epilepsy Foundation of Florida on March 10, 2012 where everything was purple themed. I brought the Idea to them and they loved it. I figured I really don't know how to give back, but I know what I love and that is fashion. I created this show from start to finish from getting sponsors, designers, models, location,etc...with the help from The Fashion Honors Group at The Art Institute of Fort Lauderdale. We featured designs by Elease Donovan Swimwear, Mitchell Perry, and Anna Topf, just to name a few. We raised around $1,800.00. I would like to do shows like this all around the US raising awareness and money for this condition and the foundation. Here are some images from the fashion show. All the swimsuits are by Elease Donovan Swimwear."

Do you feel that it is important for people to speak up as advocates and volunteers for Epilepsy?

"It is important to speak up and speak out about this condition. Many people have Epilepsy but there are no role models to look to like there are for breast cancer. It is extremely disappointing. We should have more people like Mandy Krzywonski for young girls to look up to."

(Thank you so much, Alexandra!!! You are just as amazing and we need more people like YOU!)

Now tell us a little about your significant other, Johnathon.

"His name is Johnathon, and he is amazing. This is kind of embarrassing, but we met on a iPhone app. He was the only one on the app that actually wanted to start a conversation and see how the other person was doing. Jonathan is caring, sweet, understanding, and best of all doesn't judge me when I am at my worst or other judge people."

How did you tell him that you had Epilepsy, and were you scared?

"With past relationships I was hesitant to tell the other person I had Epilepsy so I always waited until I was 1 year into it. I always assumed that if they get to know me for awhile, they would find out that I have epilepsy it won't bother them as much because I am so amazing. (Mandy's Note: I LOVE YOUR CONFIDENCE! YOU GO GIRL!) I told him I had Epilepsy on our second date. I just came out and said it. I was petrified he would just walk away."

How did Johnathon take the news?

"You can say he was my guinea pig and the results were amazing. He didn't walk away. He acted like I wanted to go to the mall. He just said "Okay!" and continued our conversation about where we were going to eat that night."

Do you feel that it is important to tell someone you're dating that you have Epilepsy early on?

"It is important to tell your significant other early on. I say within 3 months. In my case all my experiences have been positive. Say they weren't, I would not want to waste a year of my life with a person and finally tell them I had Epilepsy, then for some reason they didn't want to deal with me anymore. That is not the way to works. Put yourself first!"

How has Johnathon helped you through your struggle with Epilepsy?

"He has helped me tremendously. He has tried to understand my struggle and pain. Most of all he has helped me by driving me everywhere and not rubbing it in my face. I always feel like a burden because I cannot drive yet. Well, I can drive... Just not legally. Shhhh!.... Just don't tell anyone!"

"Does your Epilepsy or seizures ever bother Johnathon?

"It only worries Jonathan when he is there when it happens. He is afraid for my safety. It bothers him when I have to deal with Insurance companies and Hospitals that give me the runaround. For example, yesterday I refilled my medication. When I go to pick it up, my insurance company says that I now have to pay $625.00 out of pocket because the price of the medication has went up and my insurance is no longer active."

Do you ever get upset that you have Epilepsy?

"I do get upset at times. Especially when it comes to hospitals and insurance companies."

What does Johnathon think when you are upset about these things? Does he dislike it?

"Jonathan feels I am entitled to be upset. I didn't ask for it, choose it, or want it. He knows it frustrates me especially when I have to rely on other people. It breaks me down on the inside but I keep this hard shell so nobody sees that."

In past relationships, were your exes accepting of your Epilepsy?

"All of my exes were accepting of my Epilepsy even when it was at it's worse in high school. They were understanding and wanted to learn more about it and help me in any way they could. One ex told me it almost made me more human to know I have problems just like everyone else."

Do your seizures ever have a negative impact on your relationship?

"It doesn't have a negative impact because neither of us make it a "THING." Both of us know I have Epilepsy and that's it!"

Do your seizures have a positive impact on your relationship?

"It does have a positive impact on our relationship. It makes us closer. It makes Jonathan "think about me more" (his words). It makes him more aware of my needs."

Has Johnathon ever had to take care of you in time of a seizure? What was it like?

(In Jonathan's Words) "It was frightening the first time I saw her in that state. I just wanted it to stop. I knew it strained her body and that she generally bit her tongue. There was nothing I could do about it. I just had to make sure she didn't hit her head and let her ride it out. After they stopped, I would talk to her to see if she was ok. I would just try and get her back from her foggy frame of mind.""

If you could give advice to any gals like you who are nervous to break the news of their illness to their significant other, what would it be?

"Please don't be. If someone is not understanding of our condition...screw them! Be honest with them and explain what you go through. If they dump you because of something you cannot control then they do not deserve to be in your company and you are better off without that person anyway."

If you could give any advice to a struggling couple in which someone has Epilepsy, what would it be? 

"Things may look dim now, but they will get better. This will only make you stronger and bring you closer. There are many couples who will never have a bond like yours. Accept it, embrace it, hold on to it. It may not look like it now, but this is your gift."

Click the banner to see more love stories!

Engaged... with Epilepsy: Jackson & Jennifer - Part One

By: Jennifer

Hello Jennifer! Introduce yourself and your loved one.

My name is Jennifer and I am 28 years old. I have had epilepsy for almost 4 years. Life changed drastically from the very first seizure. I remember being very confused over everything including thinking "How this could have happened to me in the first place?" and where my life was going to go from that point on.

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: Mark & Malorie - Part One

By: Mark

Introduce yourself and tell us about Malorie!

My name is Mark Lopez. I am currently serving in the United States Navy. I have been in the Navy the past 6 years and have lived in Va Beach, VA and currently in Pcola, FL. I have spent more than 2 years of my life floating out at sea completing 3 deployments on board the USS Dwight D. Eisenhower aircraft carrier.

Deployments are hard but I love doing what I do. My first deployment on 06’-07’ was the best. My second deployment in 08’-09' was pretty hard! I had met the woman of my dreams a couple months before, and little did we know she was pregnant! So I did the most responsible thing I could think of and I married her. 

Married... with Epilepsy: Tyler & Stephanie - Part Two

By: Stephanie 

(Click here to read part one, by Tyler!) 

Introduce yourself and tell us about you and your spouse.

My name is Stephanie and I am a 4th grade teacher. I recently graduated from a Christian College in Florida. I have lived in Florida most of my life. After marrying my wonderful husband, Tyler, we moved about 45 minutes away from our college because of his job. 

Tyler and I enjoy simple things like going to the movies and watching tons of them at home and playing with our two dogs. We also love going out to eat and traveling when we get the chance. We are hoping to go to Comic-Con this year and the Macy’s Thanksgiving Day Parade next year. One day we hope to travel to Australia.

Married... with Epilepsy: Tyler & Stephanie - Part One

By: Tyler

Introduce yourself and your spouse.

My name is Tyler and I am a 23 year old Bible college graduate. I am a Christian Pastor in Polk County, Florida, married to my wife Stephanie who is 22. She is just about to graduate and is a 4^th grade teacher. We met on Facebook… well sort of. We both went to the same college, and I saw her walking through campus one day and thought “Wow! I want to meet her!!!”

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

Dating... with Epilepsy: Mandy & Rafael - Part Two

Mandy's painting "Vital Organs," depicting Rafael's love and support through her struggle with Epilepsy.

 

By: Rafael Mogollan    

 Introduce you and your loved one. 

 Hi everyone! My name is Rafael A. Mogollan. I am your typical high school senior and I am involved in a lot of different things. I guess you could say my two passions throughout school have been football, and discus throwing for the track team. I am a very athletic person. Just to name a few other things I do… I am a cadet officer in the AFJROTC corps. at school, an Eagle Scout with 6 palms and a Vigil Honor Member in the Boy Scouts of America, a National Honor Society student, and the founder and president of the “Future Leaders of America Club” at school. On the side I am a dishwasher at a local mom and pop restaurant on my side of town.

Dating... with Epilepsy: Mandy & Rafael - Part One

Rafael and Mandy sharing a dance at Mandy's high school graduation party in June 2011.

   By: Mandy Krzywonski


Introduce you and your boyfriend, Rafael.

You all know me pretty well by now… After all, this is my blog, isn’t it? Anyhow, for those of you who are reading my blog for the very first time, my name is Mandy. I’m 18 years old, and I have had Epilepsy for about 7 years now. If you have Epilepsy, or your loved one has Epilepsy, you don’t need me to tell you that the road of love is extremely rough. (As if it isn't already?) Something about having a loved one with a disability makes things difficult, but it also makes things beautiful in a lot of ways that are extremely overlooked.

My Sister Has Epilepsy - By: Jessica Krzywonski

My name is Jessica Krzywonski, and I go to Louis D. Brandeis High School in San Antonio, Texas. I’m in Air Force JROTC. I want to study Neurology and find the cure to Epilepsy for my sister.