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.

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.

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.

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)

How to Pray for Your Loved One with Epilepsy

James 5:14-15 "Is any one of you sick? He should call the elders of the church to PRAY over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up."

Epilepsy is a tricky illness to have, and extremely unfortunate because of that. I don't even need to tell you all that fact, because I'm positive you already know. First of all, it is an invisible illness for the most part, meaning that it cannot be seen by simply looking at someone (unless, of course, they are having a seizure while you are looking at them). Secondly, it currently has no cure for  many people (30% and growing). If surgery isn't an option for you, or medications don't work, your heart breaks not knowing what to do. Third of all, Epilepsy isn't always able to be pinpointed to a specific area of the brain, making treatment almost impossible. If doctors don't know where the seizures are coming from, they don't know how to treat you. All they can do is hand you medication and hope for the best... And that's all you can do.

...Or is it?

How Your Positivity Benefits Your Loved One's Health

Before we get into prayer and how important it is to have for your loved one who suffers from Epilepsy, I want to talk about positivity. Not only should your loved one be positive, but you should be positive for your loved one. If you find yourself saying "John hasn't been healthy at all lately. He's getting way worse." your child, in this example "John" will truly feel and think that he is getting worse. This can push John to become stressed, depressed, and negative.

I came across this great article called "A Mother's Positivity Helps Her Child to Overcome a Mental Illness". Now, I don't see Epilepsy as a mental illness, so take note that this study was done with mothers whom had children with Schizophrenia - not Epilepsy. However, it is an equally frightening illness and the conclusion of this study are amazing.  

Methodology

• The study was conducted over a period of 18 months on 129 mothers (55 years or older) of adult children with schizophrenia. Mothers completed an in-home interview and a questionnaire. Their children, who agreed to participate, also answered the questionnaire.
• There were three appraisals: A self-appraisal (how the mentally ill person perceives himself),  a mother’s appraisal (how a mother perceives her mentally ill child) and reflected appraisal (how a mentally ill person thinks about how his mother perceives him).
• 22 items (for each of the appraisals) were recorded on a 7-point scale, with higher numbers indicating more stigmatized appraisals.
• Life satisfaction was assessed using 22 items on a 7-point scale (1- terrible to 7 – delighted). The participants rated their perceptions about living arrangements, social relationships, leisure activities, finances, employment, safety, and health.
• Self-efficacy score was measured by the average score on an 8-item scale. The items were coded on a 1 to 4 scale with higher numbers indicating a greater degree of self-efficacy.

Data/Results/Key findings

• Increased symptoms were associated with increased stigmatized mothers’ appraisals, and stigmatized reflected appraisals. (The patients whose mothers were more negative, and saw their children to be more ill had children with worse symptoms.)
• Increased life satisfaction levels were noted with less stigmatized mothers’ appraisals and less stigmatized reflected appraisals. (Mothers who had more positive views on life satisfaction with their children had less negative self appraisals and reflected appraisals.)
• Life satisfaction levels had a significant effect on the self-appraisals.
• Higher self-efficacy was seen with less stigmatized mothers’ appraisals and less stigmatized reflected appraisals. The effect of self-efficacy on stigmatized self-appraisals was very significant. (Mothers whom had a more positive outlook on themselves and their lives had a higher self-efficacy, also known as the ability to hold perseverance and reach goals with both themselves and their sick children.)

Conclusion

Less stigmatized mothers’ and reflected appraisals results in diminished symptoms, higher self-satisfaction and a better quality of life in mentally ill persons. Self-efficacy and life satisfaction levels are influenced by stigmatized self-appraisals. Stigmatized self-conceptions lead to a sense of lack of control, and social exclusion which leads to diminished life quality. These results suggest that the recovery process is a social-psychological process and stigmatized appraisals slow recovery from mental illness. What other people think about mentally ill persons affect the beliefs and actions of the mentally ill, which in turn shapes the outcome of the recovery process.

Read more at FYI Living: http://www.fyiliving.com/research/a-mothers-positivity-helps-her-child-to-overcome-mental-illness/#ixzz25isOnj3v

Coming from a patient with Epilepsy (myself), I can easily agree with this study in many ways. I have noticed on my own that I seem to be more self-efficient and less symptomatic when my family and/or loved ones are more supportive and have positive attitudes toward me and toward the idea of me having Epilepsy. During days when their attitudes are negative toward me or toward my illness, not only do I find my own attitude turning negative with theirs, but I also feel a major amount of stress due to those thoughts, resulting in a higher seizure count (not to mention, more severe seizures). Stress is the #1 trigger of seizures, and negativity is what brings it on.

We want to keep in mind that this study was only done with mothers and their children, so we must imagine how other people play a role in their loved one's lives. This includes fathers, sisters, brothers, cousins, aunts, uncles, grandparents, best friends, boyfriends, girlfriends, husbands, wives and soon-to-be's. Especially if a person is closer to their (example) husband compared to their mother. If you see yourself as someone your loved one relies on most, they need to see this positivity from you more than anyone. They attitude you hold with a loved one who has Epilepsy can make or break their day.

So how can we be positive with the ones we love more often?

- Avoid unnecessary fights or arguments: Yes, maybe your daughter didn't throw in the laundry this morning. I'm sure to any parent, this looks like pure indolence. But if I might say that I personally put down all activities until that feeling of "Oh no, a seizure is coming any minute now!" goes away. Because even the slightest exertion of force on a dish or a basket of laundry can bring it out. Try to understand that things aren't always what they seem to be. Instead of immediately yelling, ask how they are feeling. "Mandy, are you feeling okay today? I noticed you hadn't done the laundry and I was worried maybe you're not feeling too well." If they're not feeling well they will tell you, and you avoided stressing them out with yelling. If they feel okay they will notice your kindness and will probably say "Oh crap, I forgot! Sorry mum!".

- Be as positive as possible about the state of their illness, especially after a seizure: We all know seizures "look bad". They are terrifying to watch, and even more terrifying to have. However, the last thing we want to hear when we've come out of a seizure is how bad it looked or how you had to rush out of work and miss an important meeting to take care of us. Or how you'll probably get fired for having to leave, or how we'll probably have to quit our own jobs, etc. Those statements make US feel bad. They make us feel like we are in the way of your life, and we should never have to feel that. We cannot help the fact that we have seizures and until there's a cure you should love us the way we are. I have seen how I cause my parents stress, and it has been all too easy for them to push the stress back on me. I can't even count the amount of times I've been yelled at for being sick, or have had hospital bills thrown in my face. Once again, the stress from hearing this causes more seizures which is never good for anyone.

- When the doctor gives bad news, give us good news: Doctors unfortunately have that sad responsibility of giving the bad news to their patients. If anyone else is like me, the stress from that bad news is enough to send us into seizures for days. When you are at that appointment with your loved one, or when you are meeting up with them afterward to talk about it, be their good news. You don't necessarily have to give "news," but at least be positive. Say something like "Yeah, well remember the last time he told you news like that and everything ended up okay?" or "You're in my prayers and God is going to take care of this mess." And be sure to remind us if the "bad news" is actually good news. For example, if we are getting brain surgery but we're so scared that it seems like bad news, remind us how successful so many people are from their brain surgeries. Don't let us forget that we are in this to find a cure.

- Don't let us give up on ourselves: When you hear "I give up. I just give up." or "I'm tired of this, I can't take it anymore." That is your que to jump in and be a best friend. Grab a $1.99 RedBox movie and some popcorn and put together a movie night, or just find some way to take our mind off of the sadness and the stress. I shouldn't have to mention it again, but this is so often overlooked - Stress is the #1 cause of MORE SEIZURES. We don't need ANY!

- Speak positively about us to others, both in front of us and away from us: Say only positive things. Tell others "Haley is doing a lot better than she was and I am happy to say that." even if Haley had a seizure a week ago. This gives Haley hope and a positive attitude. Imagine telling someone how sick Haley has been, and then having that person say "Hey Haley. I'm sorry to hear you're so sick. Your father told me all about it." Maybe Haley thought she was doing better? And now that she heard how sick she was, she will start to believe it.

All of that leads us to our next way to be positive, and in my family and my life it is the most important one. That is to pray for us. When people start to talk negatively about my illness or even mention my seizures, I usually stop them and say "Don't worry about it - Just pray for me. God has this under control." It's my little way of benefitting the both of us, and shutting up before the negativity even comes out of their mouths. Prayer is such a powerful tool in our lives, and it's FREE. Doesn't even cost $1.99 like that RedBox movie! The only problem is that so many people nowadays say they don't know were to start or even how to pray.

Psalm 107:18-22 "They couldn’t stand the thought of food, and they were knocking on death’s door. “LORD, help!” they cried in their trouble, and he saved them from their distress. He sent out his word and healed them, snatching them from the door of death. Let them praise the LORD for his great love and for the wonderful things he has done for them. Let them offer sacrifices of thanksgiving and sing joyfully about his glorious acts."

I used to laugh when people told me "I don't even know how to pray". I have always grown up in a home where we pray every single day when we wake up, before all of our meals, and before dinner. So praying, to me, is common sense and an everyday part of my life. And I guess I always assumed others did this as well, but I've found out throughout the years (especially this year) that people do not do this anymore. So I would like to take this time to give you a prayer I wrote last night that you can pray each day for your loved one who is ill with Epilepsy. You can pray this alone, or pray it together with them. Remember that the more people, the more powerful the prayer!

Matthew 18:20 "For where two or three come together in my name, there am I with them."

Prayer for Your Loved One with Epilepsy

Dear Holy Father,

I come to You today, humbly and in love, to confess

Your Holy Word concerning the great power of Your healing.

Someone whom I love very much, (Enter Name of Loved One),

suffers from a terrible illness in which only You can heal.

Lord, You are the highest of the high, and no mountan

is too high for Your children to climb with You on their side.

It is written in Your Holy Word that Jesus Himself

took our infirmities and bore our sicknesses.

Therefore, Father, because I worship and reverence You,

I have the assurance of Your Holy Word that the angel of the Lord

encamps around (Enter Name of Loved One Here)

and delivers them from every evil work.

This sickness, also called Epilepsy, is NOT of your doing, Lord.

With this knowledge I know that no evil shall fall upon (Enter Name of Loved One),

and no more sickness shall be allowed into

(Enter Name of Loved One's) dwelling or place of rest.

Let the Holy Spirit abide in (Enter Name of Loved One),

and deliver them perfect soundness of mind and wholeness in body and spirit.

Touch (Enter Name of Loved One) with Your healing hand, Father.

Touch their brain, Lord, and restore it to perfect health.

Calm the pain (Enter Name of Loved One) feels and let it not return.

Remove these seizures from (Enter Name of Loved One's) body that torture them constantly.

Bless and heal (Enter Name of Loved One) from their brain,

all the way down to the marrow of their bones.

Restore them to perfect health so they may glorify Your Holy Name.

Please give myself and (Enter Name of Loved One) the gift of the Holy Spirit,

and bless both of our tongues so that we know what to pray for in Your Holy Name.

Let the Holy Spirit pray for both of us

and pray the words that our mouths cannot utter,

especially the cries of our hearts, Lord.

I thank You, Father, for the blessing of another day on this Earth.

I thank You, Lord, for all of my loved ones, especially (Enter Name of Loved One).

I thank You for giving me a mouth capable of this healing prayer

and I acknowledge that it is only because of You, Holy Father,

that this prayer has the ability to heal.

Thank You for blessing me with a heart that is capable of love, Lord,

and help me to continue to love as You wish me to love.

Thank You, my Lord and Savior, for Your divine healing of (Enter Name of Loved One)

and I forever hold fast to Your Holy Word.

Amen.

Praying in both hope and faith is important. Many people pray in hope that "maybe if God feels like it he will heal my son". But God really wants to see us pray in FAITH, knowing that He is God and that it shall be done. He tells us in Matthew 21:21 "Jesus replied, I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea,' and it will be done."

People say they never see miracles anymore as much as they used to, or as much as they read about in the bible. The reason for this is simply because we are foolish people who live by sight. We have to "see it to believe it". However, when it comes to the Lord and his power, we must live by faith. In 2 Corinthians 5:7 we are told "We live by faith, not by sight." So follow the Word of the Lord and have faith that it will be done. Don't follow the ways of man by not believing miracles exist or that prayers are not always answered. 1 Corinthians 2:5 "So that your faith might not rest on men's wisdom, but on God's power." Show Him your strong faith in His Holy Word and He will show you the power of His gift, prayer.

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Thank you for reading and be sure to enter this GIVEAWAY! I'm giving away 3 purple Positive Pins to help you remember to speak positively throughout the day! They are magnetic, clip onto your shirt, and won't leave holes or any of that nonsense - and these babies are strong, just like our Lord! They won't fall off!

a Rafflecopter giveaway

Familia es todo, para siempre y siempre.

Also Read: Hope, Faith, and Love - Thank you, Uncle. 

My dearest Uncle Fred,

I'll never forget how one simple phone call to pray for my health turned me back to the Lord. It makes me understand what you mean when you say there is a purpose for everything, because there was a hidden purpose behind you calling to pray with me. It was because God was using one of his most faithful and loyal servants in our family, which is you, to bring back a lost sheep, which was myself. 

Listening to your prayers, I saw how strongly you and auntie believe in the Lord and it made something inside of me awaken. This yearning for the Lord that I never understood or felt before. I wanted to be like you both. I wanted that passion for God. All because of a phone call... That really is so beautiful and it has me in awe even to this day. 

I thank God for giving me and our whole family the blessing of your life. You are and will always be the father of this family. Why? A father cares for his family every waking hour of his life, like you have. He has strong hands that guide his children to the right paths in which the Lord wants them to take, like you have with each person you come across. A good father is kind and forgiving, and speaks no negativity. He opens the door only for hope, love and faith.

You are all of those things and more, tio. Don't forget that. We are the ones who are blessed just to have been able to say we know you or have spoken to someone as wise as you. Thank you for the love, hope, and faith that you have personally brought into my life and all the others of this family. Thank you for all of our amazing memories. In Michigan, or here in Texas at the beach each summer. Thank you for your noble advice and words of wisdom that will stay with me always. Advice and words of wisdom in which I will instill in the hearts and minds of my own children. Thank you for simply being who you are.

I can't say I know a single person in this family who is more worthy of meeting our Father in heaven than you. You are the absolute best example of a job well done. We must not only all learn to use your life as an example, but we must all learn to use your lessons in our everyday lives. After all, you've given us so many. 

I am rejoicing for you and everything that lies ahead, uncle. I may not physically see you at the beach this summer if it be God's will, but your memory will always remain in spirit, just as you said to me. Next time I see you, we'll be in a place more beautiful than any ocean could ever be. Free of pain and suffering. No more cancer, no more seizures. Nothing but smiles for the glory of our amazing God. I look forward to seeing you there.

I love you with all my heart. Thank you for being one of my greatest blessings. I love you so much. Please do not be scared. Rejoice in the strong love our family shares, and the beautiful blessings that lie ahead. Love is unlike our faulty human bodies in the way that it can never fail or cease - it is forever. Even after we pass on to our home with the Lord. And for that reason, I thank Him endlessly for creating it. We shall love you through this with the good Lord on our side.

Revelation 21:4

"He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away."

Con cariño,

Tu sobrina.

Familia es todo, para siempre y siempre.

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...

Hope, Faith and Love

***Please read and leave your prayers and words of hope for Alfred in the comments.***

My family and I took an unexpected trip to one of our old homes, Michigan, to attend the funeral of my great grandmother, Elijia and to visit my grandmother, Elodia in the hospital who had a stroke on the day of my great grandmother's (her mother) death. In the same week as those two happenings, my amazing uncle Alfred was also diagnosed with stage 4 pancreatic cancer and was given two months to live. On top of myself getting brain surgery this year, it's safe to say this trip was much needed, no doubt.

It was a stressful trip, yet enjoyable at the same time. It's hard to think that those two things can exist together, but they can. Being blessed enough to see family whom I haven't seen in years was the enjoyable part. Having to see the ones I love struggling with these illnesses was the stressful part. I was so stressed I didn't get an ounce of sleep until the night before I left to travel home, so you can imagine my seizures should have been running wild. However, they didn't run wild until my last day there. Surprising, right? I looked pale and sick the entire time I was there and even makeup couldn't cover that up. I thought it could, but my camera reminded me otherwise.


My grandmother, Elodia is back to normal. We're calling and begging her not to clean... Well, more like threatening her not to clean "or else". "Or else what?" is the real question behind that situation. However, my real reason for writing this article is my uncle Freddy. (Feel free to pray for grandma, though. We all need prayers.)

My uncle Alfred and I talked a lot while I was in Michigan. He told me something I had never known about him - he actually had seizures when he was a little boy! I was taken aback because I figured he would have told me that by now. But it was nice to know because I felt like someone finally understood me and what I was feeling. He described them as "electricity taking over your body". Thats exactly what they feel like. Someone in my family finally knew.

One afternoon my uncle and aunt put their hands over me to pray, as I sat at their kitchen table with cold vegetables on my head. The whole time I wondered why my aunt Mary and uncle Alfred prayed for me when my uncle, himself, is so sick. "We should pray for him, and his healing. Not mine..." I thought. But still, they prayed. And I started to cry because I felt the selfless love my uncle has for others through his prayer, just like the selfless love that God has.

Near the end of their prayer, a small seizure sparked. It was truly quite an insignificant seizure in the way that was not convulsive, but it was one of those seizures that takes a major hold of my mind - and I dropped the vegetables to the ground.

The lack of several days worth of sleep along with the weakness of my body took that small seizure and really multiplied it. Therefore, I don't remember all of it. But when I was fully aware, my uncle was holding me.

My uncle, who is suffering from something more terrible than I could ever imagine, was taking care of me! What an amazing example of selfless love... And all he ever said about himself the whole trip was that he'd come out of this illness and that God would work a miracle on him. I, and many others, struggled to believe it because of what the doctors said. They said he has two months left to live. For whatever foolish reason, I failed to see how God could change that. Nonetheless, his faith and hope was and still is absolutely amazing.

I always knew stress was a seizure trigger, but never in my life did I see it happen so quickly right before my eyes. As I hugged and kissed my uncle Alfred goodbye, he said "I will always be with you in spirit." and I felt that kick in the gut and draining feeling in my face letting me know tears were on their way. I struggled to hold them in, but I did it somehow and said "See you at the beach next summer, I love you." Heading back to the car and wondering how we'd see him next summer with only two months left to live, and I lost control of myself.

Knowing that hug and kiss on the cheek may be the last I get to share with him was too much. How could something so terrible happen to such an amazing man? That thought alone had my mind hooked, and the tears took me over. He never knew it until I told him, but Uncle Alfred brought me back to the Lord with a simple phone call and prayer a few years ago. My aunt Mary even told me they have both been praying for me and my Epilepsy every morning for a long time now, and continue to even though he's the one who needs the prayers more than I do. (In my mind, I thought this at the time... But we all need prayer). Realizing this, I cried harder than I have in ten years and had three seizures immediately. However, it felt good to finally seize because the pressure in my head was gone.

But as we drove the long, quiet 23 hour drive home, I remembered that uncle Alfred told us not to cry. He has always told us to be thankful, and full of hope, faith and love. Not to mention, he told me there was a purpose for all of this. I have already found one of those purposes, and that is the chance for me to share this story with you.

Hope is something we, as humans, lose quite often. If something isn't in front of our face, we assume we'll never get it. Whether that be a doctor telling us that we are cured of our stage 4 Pancreatic Cancer, or a doctor telling us we are cured of our Epilepsy.

So how are we supposed to have hope if what we want or need isn't in front of our eyes? To have hope, we must also have faith and love. Not just any love, but a selfless love. A love for the Lord, and for those around us. And not just any faith, but a strong faith in the Lord that He will bring us through our battle in His own way and on His own time.

Together, our faith and love should say "Lord, I love you and I give my life to you. I give my hope, my faith, and my love to you, Lord. I know in your hands, I will end up where I belong. You have already given me all of these blessings, and brought me this far - where I belong can't be that far away. Anything is possible with you by my side, so please accompany me on this journey and lead me through this dark valley into your light. Amen."

So, my friends... Just because the doctor says the odds are not good, or just because the journey seems too hard or too long to complete does not, by any means, mean you can't make it through. With God by our side, all things are possible. He has overcome all things in the world, and He is simply waiting for us to realize that.

Please keep my uncle Alfred in your prayers, as he is still battling this illness. However, I got a call today from my family saying that my uncle Alfred has made it through two operations successfully, and has a third one on Wednesday. He is doing very well and our many, many prayers are paying off. None of us expected such good news, but God is good and He has truly shown us all that hope, faith, and love are essential for making it through hard times.

"Thank you, Lord for getting my uncle Fred over this first hurdle, being today's surgery. You are such an amazing God and I knew you'd get him through this. Your love is astounding and I will forever give you glory and honor for that. Please continue to put your healing hands on my uncle Alfred Cantu as he goes through this battle. He has been a strong and faithful servant to you for many, many years... Bringing lost sheep and unbelievers back to you, including myself. Praying for others whom are ill and suffering and showing them your healing. So please heal him, Lord, and he can glorify your name for many more years to come. Amen."

With God on our side, a cure to Epilepsy, or anything for that matter, is not at all far away! Keep believing, my sisters and brothers!

Romans 8:24-25
"For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? But if we hope for what we do not see, we eagerly wait for it with perseverance."


Matthew 17:20
"He replied, “Because you have so little faith. Truly I tell you, 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.”"


1 Corinthians 13:13
"And now these three remain: faith, hope and love. But the greatest of these is love."

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."

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