When I Saw Heaven

It has been almost one year, and I still thank God. I thank Him every single day for letting me live to see another day on this earth. Yes, I do often wonder where I am going, I do struggle as I aim to move forward. But even when I fall to the floor, hitting rock bottom, I am reminded... Reminded of what God asked me to do here on His Earth. Reminded that He is always with me, and that He will continue to pick me up whenever I may fall down on this road of the life He has given me.

As I laid in bed, about an hour before brain surgery #2 (the removal of Left Temporal and Occipital) my family came to me. They came to me to pray and make sure that I felt alright and wasn't worried. There were thousands of people praying for me all over the world. From fans, to family, to churches and prayer groups. That is what made this morning so profound... After each day of being afraid, I was at this calm stage of peace. I felt like my body was afloat and as if a million hands laid on me for prayer and protection. I wasn't scared and I felt nothing but joy. The nurses asked me if I had taken pain killers or drugs because I felt so happy that early in the day! (About 5:45 AM) I told the nurses and my family that I was ready to go, no matter what happened. I told them that I was not afraid and that I could feel God and his angels all around me in my bed. I felt loved ones whom had passed with me to fight. But little did I know, I would actually get to see them during my brain surgery, only a few hours away...

~ ~ ~ 

I was moving into a place I had not seen before... I would say walking, but it just isn't the right word... It was like floating yet walking all at once. I could feel my body, but it made the regular healthy body here on earth feel like a pain to carry. I was not heavy at all. I could go forward, back, and side to side with ease. Without my mind having to tell my feet or my legs to move. No sore knees or stiffened joints. No difficulty with my lower back. No pain, whatsoever. 

I chose to move forward as something called me with a language I did not know here on earth. The sound of blessed instruments that I had heard only a few times in my life when God came to me during my seizures. Except this time it was more bold and beautiful. Making me crave what was in front of me in a spiritual way. This music fit my spirit like a puzzle piece, bringing me joy, love, and safety amongst so many other feelings I cannot describe as they do not exist on Earth.  

I started to hear the heavenly voice of my tio Alfred, whom had passed away a few months before my surgery. I saw him right in front of me, with his palm out to me. Many of us call him the father of our family, as his heart was so strong with The Lord and we could run to him for prayer. We were so sad when he passed away from cancer. We all needed him so much and I often questioned where he was or where I would go if I died during surgery. I needed him so much to help me get through brain surgery, and he was dead... Or so I thought, at the time. Because there, in Heaven, he was more alive than ever. His skin color was beautiful. Like a skin color I had never seen. He glistened in a way that was peaceful and joyful and his body praised The Lord. He stood with one arm out to me, palm side up. Letting me know to continue walking toward him.

I continued walking down the beautiful path, with Tio Alfred leading me by my side. I was in awe at how young he looked. His skin was clear and healthy like the skin of an infant... Except was a beautiful color, which let me know health was no longer an issue. I found myself in awe of the beauty that was in front of me and all around me. The beautiful land that made Earth appear to be boring and worthless. I could see Mountains to the left, with beautiful land like no other I had seen. Green healthy plants covered a lot of the land, and it amazed me how it was so healthy. I hadn't even come to the gate yet and I could see this from so far away!

I saw the buildings made of a gold material. Beautiful... And when people ask me what they looked like, the word "riches" comes to mind. God does have a beautiful place for us to go. The glistening of these buildings captured my eyes. So large and glorious, built with perfection. The lovely color of the sky that was not a color I had ever seen. Reminded me of a purple but is definitely not purple. Maybe it reminded me of purple only because that is an important color to me personally?  I just remember identifying a color similar to one that I knew, and purple was the one. The sight of these new colors alone had me in awe. Colors that once did not exist. I long to see them once more. 

I could see the gate from afar... The actual gate! It is real! Just like The Bible said! Made of a beautiful, very tall, cream-colored stone material... Like a pearl, but very large and stone. Polished well and glistening like the sun. The brilliance and depth of the color of the stone was beyond this world. But it let me know where I really was, and I was not even touching it yet. Seeing things from afar in heaven was easy, as my eyes were not weak and distance did not matter. I could move with ease, and time nor space could hold me where I was.

As I saw grandpa Popsi I first questioned who he was because it was such a young man.... Yet somehow I knew it was my old Popsi. I only knew Popsi when he was very old, and I had honestly never seen him when he was young. So I was curious how it was happening... How was I recognizing this young man in front of me whom I never knew at that specific age? I never even knew his voice as a child because he was so sick. When he was alive, I only heard him speak a few times. Other times he would just write to my family on a piece of paper or point to what he needed. So how is it that I knew him and could recognize him so young? He spoke in the same music that Tio Alfred spoke in. Yet somehow he laid the knowledge on me of who he was. Therefore I knew I was looking at my Popsi. This was truly amazing.

Tio Alfred and grandpa Popsi both walked with me and spoke to me. My Tio told me what to tell our family and what to tell Tia Mary. (Tia, by the way, was not going to come be with me for surgery even though I begged her. I spoke aloud in my room asking Tio to please change her mind, and only minutes later she called saying she was coming to be with me!) Tio Alfred told me to tell Tia that he would always love her, and the same for his children. He also asked me to tell the family to be happy for he is in Heaven with The Lord and that he was no longer sick or in pain. This love amazed me more than it ever had before. But when Tio told me he was expecting me, and knew he would see me before I was in heaven, my mind was blown. Before he died, he whispered to me during a prayer at his dinner table saying "You and I will be going through something very hard together soon." And when I asked him what it was, he never replied. This is what he spoke of and it was yet another miracle on it's own. 

Popsi told me something that you would think would shock me; He told me that grandma Jojo would be with him soon. My father and I take care of Jojo regularly, so the thought of losing her is a little sad. But knowing she would be with Popsi and get to be somewhere so beautiful does not make me sad at all. It makes me so happy for her. Popsi told me to tell Jojo that he loves her and is in heaven waiting for her. As Popsi spoke I noticed how jolly and young he really truly was. How handsome and healthy. But how young!!! That was the most amazing to me!!!

Ever since I was little I was slightly scared of heaven. The Christian songs mentioning how we would "fall to our knees" or become "unable to speak" sounded so awful in my mind. But it took me until I was outside of the beautiful gates of Heaven to realize how amazing it really is to fall to our knees and become speechless. As Tio, Popsi and I came to the gate The Lord spoke. His voice more powerful and beautiful than all the others. More instruments than you could ever imagine played with his every word. Technically they weren't even words and were that music alone... I just somehow knew what He was saying as I fell to my knees in grace.

God told my Tio Alfred and grandpa Popsi to hold each of my arms. Tio Alfred grabbed my left arm, and Popsi grabbed my right arm. He said it was "Not yet my time". This made me sad, yet at the same time I was enjoying God's voice and it's beauty. The Lord appeared in front of me in an instant. The way he travelled was amazing, and as He spoke, He moved me with Him to see what He spoke of. I begged Him to let me stay and go through the gate. He reminded me of those whom I love, such as my mum and dad, and Rafael. But even then, I begged to stay. It was amazing - I wanted to give up everything I loved in life to stay in Heaven. 

Why? Heaven was all I needed. No hunger or thirst or pain. My body moved freely and music left my mouth. I praised God with every word. What was the best? Well, I could see my Father's body up to his bottom lip. He would not allow me to see the rest of His face for some reason... Or maybe I was not fully equipped to see it? I will never know until I return to heaven when I die. Regardless, it was pure joy, and nothing but. For that unexplainable beauty, joy, and peace, I continued to beg even more.

God once again told me that I could not stay. He told me about my work to do here on His earth and He told me to help those suffering like I am, and to bring them to Him. He showed me my future children. He showed me their creation right in front of my eyes. Not the creation the Earth and humans see, but the heavenly creation. I saw a small baby grow from the womb to a human filled with God's Holy Spirit. This baby was a boy and had the features of my love, Rafael. I remember seeing this child have his father's eyes and skin. I asked if God was showing me Rafael as a baby boy. I did not understand what I was being shown. And then God spoke, saying this was one of my children. It was so beautiful to see, and although I wanted to stay in heaven, I did want to hold my child so badly in my arms. I felt the love of a mother seep into me, making me long to hold a child some day. And with this thought, God put his hand in my head and told me "Your time has not come. Go back to Earth and help those who suffer the way I have helped you. You no longer have anything to fear about your illness, for I am with you." 

With a light press on my head, God pushed me back into my body and I woke up in my hospital bed. I hadn't waken up for a little too long and my family and doctors were worried. The worries of me being brain dead and non-responsive burdened them, for they did not want to lose their child. But there I was! finally waking up. I felt earth once again and saw my uncle Steve and aunt Lina by my side. But I felt my body breathing, and the aches and pain of my head. So I closed my eyes to sleep. For I was alive again, and pain was proof. But I laid calm knowing God was by my side all along, and forever will be. 

~ ~ ~ 

The entire experience of seeing Heaven was far beyond amazing. I did my best to explain it decently to you, and I apologize if I didn't explain it well enough. Feel free to leave questions in the comments and I can answer them for you. 

As far as the update on my health, I have only had a small handful of seizures this year. In my mind they are gone. I have, however, started having Panic Attacks, as you may know from my last post while I suffered from a small one. Most of them last for quite a long time. Almost an hour, and are very difficult to deal with. But God has been with me through so much that I can not lose faith in Him now. I will say that now that my seizures are gone, I realized how beautiful so many of them truly were. Seeing those colorful auras is the gift that I miss. But God only gives us gifts for so long here on Earth, and I look forward to those that come in heaven after I walk through that gate.

It's Been Quite a While

It's been quite a while since I have written.  Since my brain surgery last February it has been difficult to process thoughts at a decent pace. Worse than that, it has been extremely difficult to read. I am still hardly able to do so and it has almost been a year of re-training.

However, I have come very far. Compared to before surgery, having 30 to 100+ seizures a day, I now have only had a handful. And I don't mean "per day"... I mean since surgery. Definitely an amazing blessing and that is for sure. Plus - my hair is growing back beautifully!!! 

I am now only taking Trileptal and Onfi for my seizures. I was taken off of Felbatol entirely - which was a challenge to do, but I did it! - and I will hopefully be coming off of Onfi in about 3 months. 

My Psychologist that works with my Epileptologist has decided to put me on Pristiq. I was not entirely happy about taking this drug at first. The thought of being stuck on more medications had me enraged. But when I started to take the pill, I honestly felt my happy emotions as clear as day for the first time since surgery. When prior to taking Pristiq, I constantly had mixed emotions or don't feel emotion at all with people I loved. 

I was able to get off of this medication for quite a while until about a month ago. My brain had major difficulty with depression out of nowhere. We aren't sure why, but it could be one of 3 things:

1) I was put on an acne medication that had side effects of serious depression. The doctor never told me this and I was not aware until I had been taking it a month (which is when the depression hit).

2) I came down with a bad stomach virus. This happened at the same time as the issue with acne meds. I am not a cold-catcher but this one germ was too powerful for my body to beat. I lost 17 lbs. of weight in a week and could hardly down water. I would get anxious and intensely sad just before I would puke or during the chills and sweating episodes.

3) My depression may simply be seasonal. It's been a cloudy season, and December hardly gave me any sunshine. Rainy days made me feel down. Days when it was too cold to go outside made me so anxious and depressed. All at once.

Anyhow, all three of these happened at literally the same time. So there really was no way to know for sure. My doctor have me a low dosage of Xanax to last me for 7 days until the flu bug cleared up. 

I have overcome a lot of my issues in many ways. From daily exercise to making art when emotions are difficult. Taking a nap to clear my mind, to great apps that help with anxiety and SAD (Seasonal Affective Disorder) which is also known as Seasonal Depression or "Winter Blues". Drinking delicious teas as I sit out in the sunshine for 30 minutes a day has been the best, by far.

Anyhow, it is 3:00 AM and I really should be in bed. Just wanted to update you all and let you know that I will be writing more and more. I am slowly becoming EB again. It just takes time and patience!!!

For All Epilepsy Warriors on the Ship to Galilee

NOTE: I hope what I say in this post makes any sense - it has been a long day. Missed therapy so I had to take an extra long walk that has worn me out, yet I cannot sleep. But I thank The Lord nonetheless!!!

I have gotten many e-mails from folks going through hard times. Preparing for brain surgery, preparing their child for brain surgery, medications are not working, having too many seizures, having trouble sleeping, issues with health insurance, losing their jobs, relationships falling apart due to having a partner that dislikes their condition, and so on. I will continue to pray for The Lord to help you all through these times. I know they are hard.

We may not have gone through the exact same things but we have both definitely experienced those periods of the rough waves hitting our ship in Galilee. I think that many times those waves never truly get stopped by Jesus, as He often wants us to trust Him and lay down by his side until the storm calms.  Anyhow, if we asked Jesus to calm the storm (and if He did calm it) could truly block something He may want us to see, strengthen by, or a gift of the ability to help others that are struggling with what we are as well.

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.

Nevermind, Brain Surgery is Tomorrow

So, everyone... I must have jinxed myself because my surgery got moved to tomorrow instead of Thursday. A spot opened up and my doctor wants my surgery done as soon as possible. Not super excited, but I suppose it's better to get it done as soon as possible.

Here's some photos from the hospital blood prepping today! Don't I look so excited about the date change?

By the way, that's my hair in my face lol...

Anyway, this is probably my last blog. I'll try to write more tonight if I have time, but after that my family will be posting! Love you all, God bless and stay brave!

EpilepsyBlogger

P.S. Jesse from University Hospital at the San Antonio Medical Center ROCKS! This is how we do it, Jesse ;) Stay cool!

2 Days Until Brain Surgery - So close!

Today was a really nice day, actually. I felt more sense of calm than being nervous. I think it is because I did a lot of praying... Actually, I know it was because I did a lot of praying. I spent my morning sleeping in and slowly packing my bag throughout the day. I thought I was going into the hospital Wednesday night, but my mother read the letter wrong. It really said:

"After 3:00 PM on Wednesday February 20th, a nurse from Outpatient Surgery will call you and give you a time to report for surgery the next morning."

NOT "Report to the hospital at 3:00 PM on Wednesday". (Laughs)

3 Days Until Brain Surgery - Good Luck Party

Hey everyone. Forgive me for writing a little late - things have been hectic! I'm now at 3 days left until surgery, so I have been doing my preparing... A lot of it! Saturday, the 16th was my " good luck party" day. It started out great because my father surprised me by going to get my darling Rafael (three hour drive) and bring him home. Rafael was originally coming home, but the ride fell through. So I wasn't sure how we were going to pull it off. I really needed to see him.

So, dad and I left early in the morning. I was so glad that I got to accompany my dad so I could spend extra hours with Rafael. However, my father is passing kidney stones so the trip was a little slower than expected as he had to make stops every half hour. He actually passed a stone at a gas station! Anyhow, we eventually arrived and when I saw Rafael standing outside his quarters my eyes just watered. I was so happy to see him... You wouldn't believe me if I told you! Just sitting next to him was a blessing.

6 Days - Someone Knock Me Out

I don't know what to feel today or what to write. It's becoming more real than ever. I'm mad at everything and everyone for no reason. I cry every time I'm alone. I've broken down on my mother twice in front of everyone. I just want to scream and get all the energy and anger out of my body. But, instead I just sit here because I am afraid to look crazy, and I write. For some reason it's easier to write my feelings than to show them or talk about them aloud.

I know I'm being snappy and I'm sorry. I'm just so upset. Not to mention that I can't rest and enjoy life because my brother and sisters don't cook or clean. I wish someone would do it for me. But then that makes me selfish. Maybe I am selfish.

My tia, nana, and cousin arrived from Michigan today. I'm so happy to see them but my heart and my mind won't let me show it. It was so embarrassing to cry in front of them. I'm usually so strong. "The EpilepsyBlogger". The girl who kicks Epilepsy's ass and never sheds a tear. Hah. Not anymore.

My mother told me I technically go in to the hospital on the 20th, so I have 5 days to "enjoy" life at home. Still haven't started my period so I'll have to just get used to the fact that I'll be bleeding from more than one place in the hospital. Sorry for the gross details, but it's just what's on my mind. God, I'm crying all over my iPad screen.

I almost wish I'd have a seizure tonight, simply to knock me out of this mess.

Goodnight,
EpilepsyBlogger

Posted via DraftCraft app

7 Days Until Surgery - Officially One Week

Today my brain surgery is officially only one week away.

7 days.

168 hours.

10,080 minutes.

604,800 seconds.

Great.

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.

10 Days Until Brain Surgery - New Bedroom

10 days until brain surgery. I swear, days pass so quickly it isn't even funny. The Ativan has made today a little less stressful as far as my mood goes, though. However, it doesn't have enough power to kill my seizures. I have had about 200. I lost count around 1:00pm at 112 seizures.

11 Days to Learn How to Be Strong

I cannot take this at all, I swear. And today I don't mean the surgery.

I mean the seizures.

I started out having a pretty good day. Less anxious than the days before, and I even got good rest. Helped my aunt with some laundry, went to a birthday party, and saw Warm Bodies with my cousin. (Which by the way, is a wonderful and hilarious movie!) I didn't think anything could really ruin my night, to be honest. But I was so, so, so very wrong.

Drowning in Saltwater - Day 7 WEGO National Health Blog Month

Day 7 Nov. 7th - WEGO National Health Blog Month

Prompt: Redesign a hospital room

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


Tonight is a hard night. Well, technically "this morning," since it's already 3:00 in the morning. This January's brain surgery won't stay off of my mind. I promised myself that I'd do my best not to think about it too much at night so that I can actually rest, but the combination of my antibiotics and AED's are giving me some major insomnia... So I can't sleep and I can't help it.

I only wish that the crying would stop. These tears are all over my keyboard as I type this and it's making my discharge seizures flare up. And along with those, my complex partial seizures are flaring up too... They've been going insane this week as it is. Not to mention that harsh"crying headache" I always get.

I am just so scared. Yeah, the death rate is only 0.1% and the risk of stroke is 2%... But one cannot help but worry that they might be that 0.1% or 2%. Let's not forget how hospital rooms seem to just scream disaster into your mind. Maybe if the rooms were a bit more inviting I'd be less scared. Maybe just a little bit.

(See Stanford's Risks and Benefits of Surgery PART ONE and PART TWO for more information on the risks and benefits of Temporal Lobectomies for Epilepsy.)

For example, those darn beds. Do they absolutely have to feel like rocks or is that just a choice the hospital makes to save on cash? I mean, I hate to complain... But even with the crappy pillow that seems as if it is stuffed with nothing but leaves, the bed is the most uncomfortable thing I have ever slept on. It wouldn't kill the hospital to purchase some Tempur-Pedic mattress covers at the very least. That would be a gift from heaven for someone like me, who seems to live there sometimes.

And what about the plain colors of paint on the walls that make you feel like you're sitting in a funeral home? Is it too much to ask for some yellow paint - or at least some other bright color that doesn't tell my brain to feel depressed and plain pissed off? I would paint my hospital room a nice dandelion yellow if I had the chance to choose.

But the one thing that definitely bothers me the most is that I am always alone due to those crappy little bed/chair "things" next to my hospital bed that the hospital assumes my parents can comfortably sleep in. Those darn things make me thankful as can be for that rock-hard hospital bed I have to sleep in. No wonder my family leaves me in the hospital alone overnight. (Which, by the way, is when all the seizures conveniently decide to happen.)

I just roll my eyes as I watch my mother or father attempt to pull out the little makeshift "bed" - which is really just a leg rest - and try to get "comfortable". Within an hour or less they say "Nope, this is hurting my back. I can't do this tonight, I will go home and come back tomorrow." A few times they have been able to pull it off, but these past few visits were't one of those times. And do note, it isn't their fault. It's not that they leave me alone all the time. They do their very best to stay with me... But bad backs and crappy chairs can't pull sleepovers.

Everytime my parents say they "can't do this tonight" I just laugh because I am not supposed to cry, right? Being a 19 year old young lady, almost 20, I should be able to be on my own. But the hospital still scares me as much as a Native American burial ground when I know a Tonic-clonic is coming soon. I need my "mommy" and "daddy" there to let me know I am not dying when a seizure takes me into the dark abyss, and especially when I wake up from the seizure into the hell that it leaves for me. So when I laugh, I am truly just holding the crying in. I find myself finally crying once my parents have left, which magically brings that Tonic-clonic seizure on almost right away.

I always feel so silly when I call the house crying, begging for my parents to come back to the hospital. I feel like I am a little girl again, calling from my friend's house during a sleepover, begging my father to pick me up because her older brother won't stop freaking me out. They answer, half asleep. "Hey, Mandy, is everything okay? What's going on?" Doing their very best to stay concerned even though they are exhausted and filled with back pain from sitting in the hospital all day.

Part of me feels happy and relieved just to hear their voices, but the cranky side of Mandy is angry that one or the other left and I start to cry. I'd usually feel embarrassed about admitting this, but who am I kidding? I'm in the hospital getting an EEG. They rip you off of your anti-epileptic drugs, make you stay awake all night listening to other patients scream from the other rooms - so you're tired and frustrated as hell. What does anyone expect from us other than to go crazy?

"Please come back I'm scared to have a seizure by myself." And it isn't a lie, because I am scared. The discharge seizures, I can handle, no problem whatsoever. I can handle the complex partial seizures too even though they make me a little nauseated, unaware, and worried that a Tonic-clonic is coming. But the Tonic-clonics are scary and impossible to get through alone - aside from the pretty auras - and so unbelievably painful when I wake up.

I then hear my father cry a little, and my mother too. Not too much, but just a few tears and sniffles. "Honey, we can't come back. We already spent a lot on gas and we have to take the kids to school in the morning. But we'll be there tomorrow, don't worry. We'll bring you some cookies. Just relax and we'll be there soon. We are praying for you and we love you. Jesus will take care of you."

I start to cry because I am still angry and scared. As if cookies are supposed to make it all better or something. And for about two minutes they just listen to me cry because I won't hang up the phone. Whichever exhausted parent is currently on the phone at that point passes me to the other parent for a repeat of the same conversation with more crying on my end. We then say our goodnights and I cry the rest of the night until a seizure just takes over and shuts me up.

My last EEG was a great example of why seizures are so painful. After crying and feeling helpless for a good hour and a half, I finally calmed down and grabbed my cell phone to play some knock-off of Angry Birds. And within that first minute of calmly playing a game I had a seizure. I hardly remember any of the aura because it was one of the most intense seizures I think I can ever recall living through, and waking up was the hardest part. It always is.

Why is it so hard, you might ask? Well, because you wake up into the hell that Tonic-clonics really are. I guarantee people would stop being so dang scared of watching you shake and grind your teeth if they could personally feel how bad it hurts to wake up. The seizure itself isn't frightening because you're not awake to feel it. So waking up... Well, that's what they ought to really be scared of.

Intense pain from head to toe - So intense that I wanted to die. I begged the nurse to make it stop and I screamed so loud that I woke up half of the hallway. She kept kindly asking me to "Shhhh... You're waking up everyone who is asleep. Don't worry it's over. Don't worry." Everything smelled and tasted like blood, which is usual. You never realize this right away because it's like you're being born again, or something. For a good five minutes your brain just doesn't work or think. I just screamed, screamed, and screamed some more.

The pain just doesn't stop, either. The head is the main place you feel it, but everywhere hurts. This time it was so bad that once I could talk I quietly cried, actually begging the nurse to kill me so it would all just stop. "Kill me... Make it stop... Make... it stop... please... I want to just die already... Don't... Don't do this to me anymore." No lie, no exaggeration. I still remember the poor nurse's face as she heard this and I can't help but feel bad for what I asked of her. Her eyes watered and she shot me up with pain killers in attempt to stop my crying.

Another nurse came in and attempted to comfort me as they both removed all my clothing. I lost control of my bladder during the seizure. Urine completely soaking the mattress. Blood, urine, an oxygen mask and rubbing alcohol wipes - it all felt disgusting. I felt disgusting. Half drugged, I laid there, still crying. Although the pain was less intense, it was still there and still terrible.

I cried for my father. He's been the one I have always cried for since I was able to speak. My mother still wonders why I cry for her less often than my father. The answer is simple, to me, at least. If someone called me a name, or did something wrong to me when I was a little girl, I counted on him to be the strong man he is and get me the justice I deserved. And in this case, I was more wronged than I ever have been. Epilepsy is hurting me, and it hurts me in ways I can never fully explain.

One of the other nurses, obviously annoyed by my 19 year old self crying "Call... daddy... I need him... He needs to come help me..." dialed him up and let me cry to him on the phone and become his problem. "Where are you daddy? I had a seizure... I'm scared... Please come back..." but he couldn't. It was 4:00 in the morning, he was exhausted, and there was nowhere comfortable for him to sit or lay down. I guess I don't blame either of my parents, though. They didn't deserve to see how much I was literally covered in my own blood anyway. I don't think I have ever seen more of my blood in my life. That would only stress them more.

Anyway... I guess if I could change one thing out of all the things in my hospital rooms, I would put another bed for my mother or father. That way I don't have to feel so scared and alone. Hopefully the story I told you from this past year has helped you understand why those stupid "beds" are not beds at all. But I suppose that feeling scared and alone are just another two parts of this sick and twisted deal that they call "living with Epilepsy," eh? I just don't know if I'm ready to risk my life to get out of this mess...

CLICK HERE TO DONATE NOW!!!

Please share this article with friends and family to help find kind people willing to help donate for a cure to this terrible illness. To some it is only "Epilepsy," but for us it is an everyday life of pain and terror.

Amanda M. Krzywonski