Darkness of epilepsy

November: it's become the easiest time to become vocal about something that's destroyed my life. Yet no matter what I still don't like talking about it? Weird I know.

November is Epilepsy Awareness Month. You know, just like October is breast Cancer is Breast Cancer Awareness Month and Everyone wears pink in honor of those  who fought and are fighting those awful disease. I wore it for my friend Jess's mom. It's Just like September for childhood Cancer awareness month- where you where Gold or Yellow or have the color up. I wore it for my little friend Ava. She lost her Battle to Brain cancer and when I got that call I lost it. She was only 6 years old. Well you see- I wear purple. Not just for me. But for my superhero Luke. My friend Kalissa, Logan, Morgan, and Never forget the AJO movement.

You see- there's A lot to epilepsy that you don't know about. There's different types.  There's also different types of seizures. There's a ton of different type of medications.  There's different treatments for different people. Some work some don't. Some epilepsy is treatable some isn't. Some are hard to treat, some all you need is more sleep- not even a pill. Some- you need 4 to 5 seizure medications, a special diet, balanced sleep, certain things you can't do. It completely alters your life. Not only your life but those around you. 

I'm writing this because Epilepsy has this certain Darkness, this Certain stigma surrounding it. Its contagious. It's this. We're afraid you'll this. Or your this. 

I'm fighting for my Job, I'm fighting to just feel better, I'm fighting for normalcy. I'm fighting for a life I once had before. I'm realizing I may never have it. This month though I'm fighting to shed light on this stupid disorder.

I have Epilepsy. A lot of people know this. I was diagnosed at 15. Over the past two years it worsened. I've gone from being on one drug to four or five at a time.  To now being on 3. 

At the age of 21, I worked a full time Job in management. I had just bought a car. I had my own apartment. ( yes I was able to drive at the time after years of not being able too) a few  months after getting my car- I wake up on the floor at work surrounded by paramedics and the fire department.  A few weeks later it happened again only 911 wasn't called I was at home I woke up with a mouth full of blood. Or falling backwards in a post office and a stranger catching you and waking up surrounded by the paramedics and fire department in the hospital with cords and tubes everywhere that one was the memorable one. 

I've lost that Job, my apartment, my car, my license. I've been bouncing around place to place because a: my health and the health system I am in. b: I lose my job again. Nobody wants to keep someone who has appointments all the time and has to request off and has ER visit quite frequently.

I was living the life. Do you have any idea what it's like to have friends to be able to come over and hang out and do what you want when ever you in the privacy of your own home? Then to  have it all ripped away and to be totally dependent on everyone on around you?  To still be that sick girl?  I had people take me in. I had to switch in an out a few times. People felt bad for me cause I was the "sick" girl. I don't have a solid family. I know they love me- but they aren't here. 

I literally lost everything. My Epilepsy destroyed my life. 

This past month my seizures started becoming more controlled. But I found I was having more side effects from the medications and now awaiting what's next. 

And I'm losing my Job. 

But what I've Gained is Knowledge!  I've learned. How people view me. How many people see me as a person. Some people suck. Some people are the most Gracious Human Beings Ever. I have help from places I would 

never imagined. I learned its expensive too!

I've met people in the same battle who have encouraged me. And vice versa. We can understand each other. We try to be there for each other as we can, because we know what this battle brings. When I hear about Luke who is 5, going through crap with Epilepsy, my heart breaks. or Logan who is 2 who has a severe form of epilepsy- it gives me no room to complain. and Kalissa and I can Talk for hours on the phone because we understand each other.  Then there's Morgan- she Lost her sister to Epilepsy. She stands up for Epilepsy through everything. 

More people die a year from Epilepsy than breast cancer. Epilepsy is one of the most misunderstood neurological disorders. Statistics speak for this crap. 

Epilepsy is scary. I get scared. Im scared. But then I see the 5 year old, and 2 year old, go through this- I have to be brave. Lee Ann, Luke's mom,gives me so much strength and Hope. Epilepsy is needs light- it needs truth. It's not just a seizure. Its so much more. It needs more. It screws things up. It wrecks lives and families. 

I have amazing friends. I'm learning this. I don't give up. I'm so incredibly  thankful they are all here.

But if it weren't for them I don't know where I'd be or what I'd be.

Because even though I don't like the answers I still have Him

This past week I had another appointment. Another Journey to Downtown Cleveland. Its taken me a while to write this post as you can tell, considering my appointment was wednesday.  

What do you do when you have no answer's? What do you do when get told exactly what you DON'T want to hear? Exactly- you can't do anything.  You can't change the situation. You can't make it better. You can't rewind time and pretend nothing happened. Although-- that is EXACTLY what you want to do. You don't alway's get what you want in life now do you? I think anyone can relate to that in just about any practical way. 

I've been battling-fighting-dealing- however you would like to uhm describe this journey of mine- thee newly increasing seizures now for over a year. I tend to compare my situation a lot- like there are a lot worse out there than me etc. Which I shouldn't do. But I do. I am for the most part a very optimistic- outgoing person. :) but this has kicked my butt for the past year. I have lost a lot-- physical crap of course. -- now Life-- it has yet to take any ounce of that from me. This week was a bummer. Im frustrated because I had my hopes and expectations that I shouldn't have had. Because I already knew the results before hand.  

After Months of fighting for the MRI and ending up with  a black eye after a seizure and losing my glasses- we finally  got it done. Since EEG's weren't helping- this was the last draw for me. So Two weeks ago from  this coming monday I went in for the MRI. I also went in to talk to a general Nuerologist. This big mouth of a Neurologist told me something that two other doctors have told me- Not just regular Medical Doctors but Epileptologist and their assistants all confirmed my worse nightmare-- Atrophy and Sclerosis to my Right Mesial Temporal Lobe.  This Dude is telling me all this stuff about the weakness on the right side of my body and how I need to do this and that. Then preceeds to tell my that the right side of my body isn't due to my hippocampus but due to possible focal points deeper the left side of my brain. My Brain is far my broken than I thought. Then He is doing all his fun testing and I bring up the Atrophy thing again because I could see the look on His face as if He wasn't suppose to say anything- and He pretty much blew the question off and told me I probably should be re-admitted again soon to see how the seizures are and to try to get the focal points. This was just the neurologist. I wont lie laughed at Him told Him He was crazy. I could in no way do another hospitalization in the Epilepsy unit. Its not fair to me-- or anyone else who has to deal with me. I just can't do it. He then said- "well I am going to make a note of it to your doctor" 

That appointment brought me to this past wednesday. I met with my original Doctor in the Epilepsy Center. I haven't seen her since November. She has been on maternity leave. 

You see this appointment was a little bit different. I didn't have to go alone. I had someone who did understand. I had someone who did get what was going on. She works for the Epilepsy Association. I was so thankful. At first I was nervous- but I didn't want to walk in alone to this appointment I knew I would not end up well. Because I already knew had a feeling of how it was gonna go. I normally - shut down. In front of doctors. I don't really speak up at a certain point. I just kinda give up because they don't listen anyway. Im really bad at them alone. Gods truly given me grace multiple times with one DR who has stood up and fought for me. :/ Its been rough. But anyway She spoke up about a few things I didn't or would clarify things I would just throw the towel in on. But-- because there are no EEG changes- I have intractable non specific Epilepsy. Thank you DR. :/ - I already knew that.  Because EEGs are so Hit and Miss. its hard to get  a Grand Mal Seizure on them and auras are often to small to register sometimes.  (so im told yet I have them all the time makes NO sense) She told me NOT to worry about my MRI that it doesnt really matter in my case because I am not have Grand Mal seizures all the time - everyday. YET when it comes to the point , thats when we worry- thats when we do more testing. I am a candidate for surgery- but were not even going to go that route until the bigger seizures start to increase. My initial reactions to that -- INCREASE?!?! -- Well at the rate that I'm at and the amount of drugs I've already failed- it could happen. For right now we did a med increase. because whatever is in the Drugs I am on now and the combination that I am on and when I decide that I sleep, eat, and workout CORRECTLY and listen to my body- I am seizure free atleast 3 days a week. Its very intermittent. BUT I won't complain.  ( Atleast it was like this for a week so far) I am hoping as the med increase goes the changes happen smoothly with this med. by summer ill be on a higher dose do to the heat. but- im ok with that! Were hoping this keeps the monthly Grand mals Tamed for a while- and no ill side effects come from it. So far none except being extremely tired all the time and nauseous and not being able to eat much and random headaches but those are common.  So Ive been a little overwhelmed and just not really sure how to deal with the news.

Then on my home from the hospital I was thinking. Thinking about God and the whys. and hows. whos. and my little friend Luke. and my friend Josh. and Kalissa, and Alyssa and Todd and just How can someone have to deal with this. Why cant we just be healed? I  have personally seen a paralyzed girl get up and walk-- why can't we be healed. Why can't we get-- better?  I just want to be better!? Heck I would be ok with even a solid answer. Just SOMETHING more. 

I got home laid on my bed and cried. just cried. that cry that just lets everything out type cry? Then I thought-- then I prayed. Then God spoke. I was reminded that SO SO often we get so caught up in wanting aswers. Wanting something from God. and when we don't get it-- what do we do? We get mad. We get frustrated. Why? because were human.  But what we Should do is just focus more on the Greatness of who He is. Not the answers, not what we have or what we dont have. But solely on who He is. His love, Grace, mercy, hope, strength, creation.

The one thing that Got me through the rest of that day was this-- that God, the Creator of the universe, the Creator of me who knows every fiber- every cell- every bone, every dying brain cell, every growing brain cell, He knows what is going on. He Loves me NO less and is Holding me. He is carrying me.  I am Loved by the King.

I just read through an old blog from January- about life with Epilepsy. All I kept saying is that it sucked. I mean living with Epilepsy hasn't really sucked any less, but my perspective on life has.

But--Because even though I don't like the answers I still have Him

The unexposed heart

As a Christian I'm not suppose to be afraid.

As a Christian I'm not suppose to lie.

Tonight Im saying I'm a Christian. I love Jesus. I go church. I serve. Etc. I know it isn't even about all of that! But its about what God is doing in your heart. If you could see me writing this right now you would see my hand is on my chest and my face and iPad are covered in tears. I only give you the details through writing because I truly just....want you to hear me. I be negative in my account and serve My church or the food bank and not have any fear in the world, any worry. Any doubt, because everything will work out in the end! I could be workings with teenage girls who have the lowest self esteem issues you can imagine – who in the end talk about you instead of thanking you, but it doesn't phase me because I know in the end they will see God and meet Him in a way that will be change their life. I pray not stop for those will scars to their elbows that they realize that Jesus' scars were enough. I pray for the girls look for the fulfillment in that "perfect" guys hug, or the kiss. Honey- he ain't perfect!!! Jesus is and until you get that all your ever going to find is failure and deceit. For the guys- I pray they Learn how to respect a lady. But more importantly, you learn how to love Jesus you'll Learn how to love a lady. Now I could do this all night. Praise God!!

Now--as said Before as a Christian I'm not suppose to be afraid. As a Christian, I'm not suppose to Lie. To BOTH very hard issues to hit.

Well I'm not. Early today somebody I trust and Love asked me How I was. I lied. I straight up totally was like "I'm fine." Due to the fact of the setting we were in, I did t want to "unload" on them. I lied. Plus they were busy. But in all reality I think I'm just giving myself an excuse.

Truth be told - I'm scared out of my mind. Tomorrow I go for an MRI. I'm allergic or have some kinda reaction to this contrast they use. This MRI is going to tell us a lot- if not everything and more. It's a higher Tesla which means a higher magnet. I don't do well with them. It's taken literally 3 months to get this thing scheduled. Due to insurance and doctors. I also meet with two more doctors tomorrow. A neurologist. I have what's called generalized right sided weakness.- I have something up with a cranial nerve on the right side of my brain. I find out if its a therapeutic fix or uhm a different type of brain surgery tomorrow. Then my epileptologist.

I'm scared, because since winter Jams seizures Ive been sick. Scared because I feel like this is getting worse. I feel like nobody knows what to do. My last appointment my blood pressure was lower than normal. I feel like I'm actually scaring people. I'm learning about those I can trust and appreciate more and more in my life. All I can do is - do it scared and trust Him in the midst of this. Because it sucks. It's hard. It's really hard. But God is able and has done far more in my life than I have ever been able too. But yes- I'm scared. Yes. Sometimes I feel like nobody gets it. Because I realize they can't. But Im so incredibly blessed. Blessed by those who hold on right along side me. Blessed by all Gods given me. Blessed because I know there is hope.


Best believe there is Hope.

"Let me be singing when the evening comes"

Man-- It's a hard night: I really do NOT feel right at all. I keep smelling this smell ( it's not me I showered haha - ok so maybe I should stop Joking about this.) I keep getting the metal taste. I actually woke up due to it. I went to bed four hours ago!!!!!! Now I am up writing a dumb blog. I have a headache ( yet I have headphones in, I do this a lot-- drowns out the pounding throbbing a little.-- again I should probably BE more serious which I tend to not be.) Then I have been getting like weird dizzy all night-- I'm night Dehydrated- it's a weird dizzy. Like I get this weird stomach thing at the same time. And I swear when it Happens it's like the freakin room contorts and makes me feel like I'm going crazy. All night. These headaches will stop then happen. Then stop. Then come back like a head of elephants through my head ( ok my lingo is definitely giving it away that I'm frustrated.)
I am fruatrated. I'm annoyed. I don't feel good. For once I would like a cold. A cough. A sinus infection. Something normal???? Explaining to people I have a seizure Disorder is a little messed up. I'm hitting a point with the Cleveland clinic a where they are annoying me. They aren't listening to me. I just-- I just need then to listen. I just need the Doctor to fully listen instead of coming up with every secondary pathological answer to diagnose me because you don't know what else to say because you won't fully listen. They won't listen. They just won't. I've been through meds that have worked but have had horrible side effects then I've had drugs that my body had just completely rejected. Then there has been meds where my body done awesome on!!! We know the Epilepsy is intractable --- nothing can be done stop trying to play God!!!
I'm frustrated because Honestly-- I'm scared. I'm scares it's coming to a worsening point for me. I'm scared it's coming to a point that nothing can be done with out serious risks. Surgery etc i don't want to do cause there are such serious risk. I just want these freakin Doctors to hear me out. Because I know more can be done. They have till April 15. To decide what to do. I have appointments every week for the next 5 weeks. Next week- I go for a new mRI because only after MONTHS of me telling them did they finally look at my hippocampus and BAM they found sclerosis the #1 cause to intractable Epilepsy. Really??!?? Now were looking for atrophy and some volume thing. I also now have to meet with a normal neuro because I have a Cranial Nerve Problem. Something is wrong with my entire Rights side of my body. This is my brain!!! This is my Brain!!!!!!!!! My main control system!!! Something goes Wrong with that something is wrong with me!!!!! :/ I am scared. I'm scared because I don't know what to even say. I'm afraid these doctors are just as tired of me as I of them. I just want my life back. I want everything back. My account is negative! I want my own home again! I want to be independent again!!! I want to support me! Not everyone and there mom!

I'm blessed I'm so honored to have what people I do and friends. God is Faithful. So so so faithful. This has not broken me has it changed me ? Yes completely-- it's scared me to... But God who is Completely 100% able did not give me a spirit of fear but a spirit of love of Power and of Sound mind!!!! No matter where I am at!!!! I have to hold on to that!!!!!


So tonight I'm singing...

" bless The Lord Oh my soul, ohh my soul. Worship His holy name! Sing like never before! Worship your Holy name"

Not for a moment

It's 1:30 a.m I can't sleep. For the past 6 hours I've been watching Grey's Anatomy and catching up on the final seasons-- all I can say is that I am WAY to emotionally involved into this show ;) anytime Meredith Grey Cries--- yup better bet I'm bawling. We're alike in a lot of ways :D I find it humorous. Then you have izzy, man this girl. Ah- as I said-- WAY to emotionally involved. That's so random of me to say but its made me think. A couple episodes ago I watched the show where George died and Izzy almost died and then a few shows later izzy is dealing with it long with Derek and they say something-
" when it hurts so much you can't breathe, that's how you stay alive - by remembering that one day somehow Impossibly it won't feel this way, it won't hurt this much"

I understand I haven't wrote in a while. Nothing to different really going on to write about- it would just be complaining if I did. Ya know? But honestly me not writing is faking cause there is a lot going on. Since I lost my grandpa -- things have become a little crazy. Just -- a tad. Not bad. But just a lot. Struggles. Good. Bad. Hard stuff. Things I don't get. Things I need help with. Things I want. Things I need to figure out. Etc. just a lot.

This past Tuesday I just got out the hospital. I spent 5 days in the ungodly epilepsy Unit. 2 days prior to going into there I spent the weekend in the Hospital as well. 3 days spent there I think it was-- that time is all a blur, all I really remember is happy feet socks and the security guard thinking I was 15. I've been ripped off meds put on meds. Changed dosage of meds. We found out I'm also hypokalemic, again. This med I'm in now messes horribly with my body and appetite, and I'm back to round 3.56735839 of not being able to eat just when I figure out a system that works. They told me I can't drive. They told me I can't work with blizzard machines anymore- they were very specific about that when they wrote my release form. How I am going to get out of that with work I don't know. I'm broke. I have no money. I'm living with a family that's so graciously taken me in because I agreed to pay them rent once I was working steadily and etc and now- I not only won't be working but I won't have a way to get myself from point a and b. I had to sell my car to my brother. No more license. My neurologist has no hope of clearing me anytime soon to get my license. The biggest blow this week was my job- I am a workaholic and love my job. Being told I can't do the very thing I put 30 plus hours of my week into doing, and mAking a living while doing it, is hard. I have to totally trust God. I have to wake up every morning and say even when I don't get it- God does. Because well he is God and some how, some crazy weird very odd way-- He has a plan. And It must be pretty freakin awesome. Truth right there let me tell you.

While I was in the hospital I was blessed with presence of this nurse-- I'll leave it at that-- for two days. I thought one day was a blessing in itself but two days- wow. She definitely had a heart for The Lord!!!!!! Sooooooo sweet! Seriouslyh! Bring up a worship song and man would she talk! But as soon as she found out I wasn't drinking enough--- that was a whole other song and dance. I swear every visitor I had she told them. I wanted to tell her to shut up! But I honestly didnt know how to nicely-- and after alllll the conversations we had all day- the only thing that went through my head was " for the overflow of the heart the mouth speaks" , I had to be nice. And I knew she was doing her job, but she was just exhausting. But anyways- we spoke about quite a bit and something she said to me while I was in the hospital - were made through the fire. This- life. Where you're at. It's the fire. If she only knew the volumes in which she was speaking. She kept coming back to my room and doing her charting and etc, and I just kept thinking. We are made through the fire and storms and deserts of this life! Things that aren't always easy. They can teach us a lot if we let them.

This is teaching me a lot. More than what's neccasary to be shared. I'm dealing with some health issues and etc - the obvious but things go deeper.

You learn a total dependence on who your maker is. You learn to listen to the one who spoke the earth into motion and not everything nor anyone else around you. You learn to trust the one who parted the Red Sea. And for me--- I think this is the hardest- I have to constantly learn to put "my" world into the hands of the one who holds THE world. Because He already knows what it all looks like.

It's hard- not knowing if I'm going to be able to work. If I'm going to be able to drive. If I'm gonna have a secure solid place to live. How am I going to work out getting places? Health insurance? Money? I need a Job? I need stuff to do? ... All these things. Superficial things. When I already truly know God has it all figured out. I know this because I'm still here. I'm still alive. I'm still breathing. And when I do fall asleep and if I don't wake up then it wasn't meant to be- but for right now I'm thanking God because I am here. I am alive.

I titled this "not for a moment" because there is a song that I've been so stuck on in all this by Meredith Andrews that goes

"After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me "

I'm holding true to that. I know He is Good. No matter the outcome of all this-- why.? Because it has absolutely nothing to do with me. But because in the end He is still God. And still Good. Ill just rest in that.

Let your Pain empower your Passion

" Let your Pain empower your Passion"

If I could go to columbus this weekend and hear this guy speak I would. You see. I simply read this, this morning and have not been able to forget about it.

its been hard to write a REAL update. Something not full of cliches. Truths. Yes. But something I know I just- it just didn't feel right. From Sunday nigh till now has been fully of so many ups and downs.

Sunday was just an all around amazing day of worship and hearing from God. I wasn't on the schedule to serve anywhere, I was open to it but did not end up doing it. I was just there. I got a little dizzy and shaky during service but for the most part I was ok. Then Had lunch with my friend and etc. Sunday night came--and WOW!!!!!!!--- amazing Worship. Everything. Just. I. Can't even put it into words. And Then I I didnt feel so great--- so I stepped out an was praying but I needed to. BUT-- it was perfect. God was able to speak directly to me about speaking at exit the following tuesday. and so when I came back in I walked up for prayer. I don't normally do that- but with speaking tuesday i just wanted to make sure I was on the same page with God. My first time and I was really nervous. Well I was praying from afar for my friends and then I talked to someone-- well I didn't know this person. She didn't know me. All i can say she was spot on with quite a bit. ok maybe everything. It was crazy. All i wanted prayer for was for speaking on tueday and then more kept coming. out of me and her.
Something that was really cool was that she knew that I wanted another tattoo-- and God had showed her something of a bird or a tree. Everyone knows I want a tree as my next one :) Theres more that she said but the tree thing and tattoo is what i want to hold onto right now. I have everything written down. A while back I wrote something on Instagram about the Cleveland Clinic and the Glowy light tree thing ( i love my choice of wording there) means a lot to me. Brings peace and Joy and Hope to every wretched horrible appointment everytime I have to go there- Especially Alone. Even though I know we NEVER EVER EVER walk alone. and I am apart of a wonderful group from a wonderful church-- but somedays-- ill be honest im realizing i dont want to talk to them i just want to sit back and write to jesus. The Tree at the Cleveland clinic is something is not something found just at the cleveland clinic but trees are everywhere. A reminder to be rooted and built up in who HE is and what HE has for you. such a blessing
You see I sat next to that tree for a while and just stared at it this past tuesday. Why you ask? Well-- Sunday was awesome- Monday was Great- I just turned 22- my friends surprised me with a great birthday. I got an ipad. i brought it in with some of the greatest people i could ask for. Tuesday morning came -- I had to be up and ready and down by the Cleveland Clinic by 8 a.m. I chose to go alone. I cant handle going with some people and then I cant handle really going alone but going alone outweighs the other. I found out Im being readmitted for a week. I have to just take it easy. I told them I was flying in two weeks- she said- make sure your meds are regulated please. and ive learned when my doctor is concerned her tone of voice really changes. and usually when she gives up on a situation and doesnt care because she knows im going to do what i want anyway - she jsut doesnt look at me. and stays stearn or laughs. im very observant. I see her every 2 weeks. You pick these things up. I got really upset/ frustrated when she told me they officially decided to admit me. She said ASAP. I said. NO. -- I dont do very well with these alone. i wasnt mean. i promise. just didnt want to. but we talked and i agreed. my insurance is covering it and and Im doing it. :( they want to get an video eeg done again along with an MRI while in the unit. but they already know i have a problem pressing the "button" so we will see how this goes. that was a rough morning. Later on that evening I found out i had to speak. I was totallyy God-- I just prayed Prayed his will be done.i had NO idea how I was going to do it. and I think He did what He needed. i was so blessed!

then Wednesday-- wednesday came- sigh. The very man who encouraged me without questioning me. we prayed. we cried. We talked of Heaven an Hell and Jesus. at 5 pm my sister called me at work after everyone had tried all day to get ahold of me and told me my brother and mom found my Grandpa Dead. My Grandpa had lived with me since i was in 6th Grade. It hurt. It hurts still shall i say. my family is hurting like ive never seen. He is the one man you thought would live forever. I mean He was a freakin champ!!!!! He was on a ventilator for... well years. since before he moved in with me. an just he had a trache. all this stuff and still functioned pretty fine. pretty normal for his condition.

To say the least He is gone. God called Him home. This week has beeen hard on me. emotionally. physically. etc.

like i said I have had a hard time posting all week. But when I read that point this morning it sparked something in me. Made me think. I know where My joy comes from. I know when i get up-- its a blessing. The last time I was in the hospital I was going through the book of Colossians and was really stuck on chapter 4. You see Paul is writing to the different churches from Prison.--- and He was telling them to " Remember His chains" - That even though He is in Prison he is STILL! going to choose to live out His ministry! Why? because the grace of god is Him and has given him what he needs Just as he will you. ...

No matter where your at. No matter what your facing. chains. sickess. remember paul. thats its. Dont fall back. Gods given you desires and passions for a reason. and sometimes your greatest message will come out of your deepest failure.

NOT my Defintion.

Met my "epileptologist" today, I just have to say- I am SO blessed to live in a city with some the worlds top Notch Hospitals. I'm lucky enough to be at the Cleveland Clinic. Ranked #4 in the state for neurology. I am so blessed. No matter how frustrating it is-- answers are answers.
I said this on Sunday in a Facebook post "I'm struggling I want healing. I want a miracle. Whether it's through God Healing me. Finding that one medication that works or even uhm - surgery. I just want it. It's a battle. Even though it's not over- I know I have a God of Comfort and a God of Compassion and I just continue to trust in Him and put my faith in Him - ill be ok. I get frustrated. I get angry. It gets hard- somedays I don't know how I do it or how ill make it- but He always pulls me through. He never let's us walk alone. Ever. No matter where your at. No matter what your facing.
Today- my Epileptologist told me- again, the chances of drugs controlling the simple seizures/ aura seizures are slim to none. We're going to try another med but also try another bout of test. I know God is Able. I'm so tired today. I honestly actually am quite exhausted and Crabby. I'm so thankful for Gods Grace and the people who put up with me. Most days I can hide it- but poor Hannah. Sigh. I've apologized so much to her. I was also told I have generalized weakness in my right side- again. Mainly my arm and slight in my leg-- comes and goes after so many seizures in a day. Dumb. I'm right handed. Makes things a little hard some days. I had blood work done. Waiting on my levels to come back.
As I said in yesterday's Post- the specialist appointments are the worse. But -- I know God is able. I'm reminded of something I heard a while back. " you have to go through the valleys because there's things you have to learn there that you won't learn on the mountain top".
It's very true. This has taught me more than what many will ever understand and still is.
What your going through doesnt define you. It doesn't make you. Doesn't break you. Should it change you? Yes! But God Promises to walk us through it all.

We never walk alone.

Just have Hope.

Another appointment today. But before I get to that Let me share a little, uhm before hand, recent stuff.

Over the past few years God has done A LOT of crazy things in my life. Amazing things Things I just-- Everyday thank Him for. Truth right there. For the most part I've tried to stay pretty positive. Stay pretty Strong. I'm -- and I know it :) a loud outgoing person naturally. I use to be shy and quiet and really just kept to myself. Boy did God break me of that over the years. I just really don't care what anyone thinks of me anymore- I'm gonna be me whether you like it or not, I know my limitations- sometimes I kinda make things a little shaky but Hey- I'm not perfect. but- if you don't shake things up a Little, what point is there to life?

Recently Its been a struggle- I've had a lot of feed back from people because they Just don't understand whats happened-- well guess what I don't understand what has happened to me. Some days its a front. Some days Its harder than others. Ive had questions Like " are you depressed", " are you on drugs" , " whats really going on",  Am I offended?  To an extent yes- because I'm not even given the time and day by some to explain. Not that I really give them an explanation to make them understand- but some-- some do.  I won't discredit all.  I'm not depressed. I'm not -- well not on illegal drugs anyway. I can't answer whats "really" going on to you because I don't know. Dr's don't fully know. We may never fully know. I have Epilepsy. Apparently its severe. Apparently its affecting a lot of everything. To eating to talking. To communicating with people. NO! I don't want a poor me- poor boo hoo crap of a thing. I want a normal life again.  Thats what I want. I want people to stop dropping off the face of the earth on me because they find out I have seizures. I want friends to be friends. I want people to stop treating me as if I am some type of communicable disease. I am not. Im a normal human being. I can still sit down for coffee with people I can still do things. Yeah I cant be as active ( although I still am I'll admit it) or do just a few things others can-- but Im realizing I can do normal things. IF- something should happen there is that 3 digit number; 911 for a reason, not only that but most of you know what to do if I were to have a BIGGER seizure anyway. If you don't well-- thats when the 911 comes in handy.  I am sorry if this comes off strong- but I'm tired. I'm tired of this affecting me. I'm tired of it threatening my Job. I'm tired of not being able to sit through a church service and etc.  I can do normal things- like normal people.

Another recent struggle with all this--is people just assuming the unknown to them. Grant you people don't matter. It is really amazing what happens in the Christian world/relm of things.  Pray this. Pray that. Pray more. Your not praying enough. This/ That. This has nothing to do with my Church. I come from a pretty solid church and I am extremely blessed-- BUT not everyone is perfect. were not perfect and we- I, definitely don't have it right all the time. We just love God. Love people. Then you have some who just don't get it. Don't get anything. Don't get what dealing or facing a problem is. Maybe I am going about this the wrong way.I don't know. Maybe I should't be so public about it. But quite honestly- I'll be real-- here we go
if I had it my way- id avoid this just like I did for many years. I was diagnosed with epilepsy at 16. First Seizure I had I remember sitting in front of my deep freezer, and next thing I know Im across the kitchen floor big bump on my head. I had quite a few after that. One swimming. One in a post office. Quite a few at a purity conference. One at a youth convention. MRIs after MRIs- Multiple stupid concussions. Then EEG's. I can't tell you how much school I missed between junior/senior year. --- Epilepsy, a Seizure Disorder. Me. Then put on meds for years. I was fine. Or so I thought. my 3rd Semester of College I had a really bad seizure. I didn't know it was coming. I didn't feel it. Nothing. I just went down. I smacked my head on the metal frame of my bed, along with the floor, in the midst of going down I hit my shoulder on something and ended up with and obvious concussion. On top of leaving for Christmas break 2 days later and a 2 week recover

At age 20 I cold turkey'd that Med I was on, I started having HORRIBLE side effects from it. Most people didnt even know I had epilepsy. Unless- you were family- or witnessed a seizure. Then all of a sudden.  a year and a half later- everything went down hill. No meds- seizure free. This past summer at a cookout with my church, I had to leave. I was really sick. I thought it was due to taking to much tylenol and ibuprofen combined.  Nope- I was told I had a chance of having "bleeding" - "swelling" on my brain, I needed to see a specialist.  Wanted to keep me- Im stubborn and left AMA. I found out I'm allergic to Dilauded and then 5 days later I was seeing a Neurologist- ordered some more test and blah blah blah. See guys a lot more going on than you think. Before all this I was just trying to get my license. I even had them. Bought a car and was working on getting it fixed. then they took my license away. Met another doctor after being put on some meds. Was diagnosed with Intractible focal epilepsy with Complex Partial seizures with Secondary generalized seizures. then talk of  surgery and finding the focal point until then more meds and more meds. these meds mess with my moods. my apetite. I drop weight. I gain it. Some give me horrible headaches. Some make me not to be able to sleep.  You don't get it. You don't understand and I don't expect you to. but please. Just- don't tell me something if you don't know. I appreciate the few people in my life who do listen. Im thankful that I know God is able. I thankful I know Gods Grace to put up with me when Im crabby and I'm learning to pull away from things when I get to off key. Its not fun.

Then todays appointment.- No bueno.  But I have to say I am blessed. I didn't have to pay a 40 dollar co-pay. :) Its the little things. I had a neurology appointment this morning. Not a specialist or anything- thankfully. Those are the worse. I have to see them soon though. But my neuro wants me to go back into the Epilepsy Monitoring Unit. Another Outpatient EEG. and I have to go for a Higher tesla MRI. All at the Good O'l Cleveland Clinic. Apparently- my seizures, the meds, the side effects of the meds, are all interfereing with me living a normal life- as if I didn't know that. (not saying that in a bad way just stating the obvious) Seizures that I only feel/know about. Some to small to Hit an EEG but some that they thing that are progressing past Meds control and want to really reconsider uhm- surgery as an option. I have to call and schedule a closer appointment with my Epileptologist and doctors at the Cleveland Clinic. Im prepared to have meds changed again. i just cold turkeyed one and etc. But till we find something that works and i am believeing we will find something that works.

My neurologist kept stressing something today- "Keep holding on. Have hope. This is hard. We know it ...have hope"  Its a frustrating thing to deal with. its one of those things thats Hit or miss. You never know when a seizure is gonna happen. You truly just HAVE to trust God. with the testing- you can have negative results one day- positive results the next. its a serious issue that you just HAVE to trust. The fact that she kept saying you just have to have Hope. You just have to keep holding on and do this and surround youself with people who will support you. I just have to keep going. I've come this far.


You see- I just keep it real. I'm not gonna cover it up with classy cliche christian slang. well- I know God is able. I know who God is. Trust me. I do. Ive said it once and I'll say it over and over and over again. This-- this isn't my ending- yes this is my story. not the end of it though. God had brought me through so much-- and this-- ha- I don't doubt one bit that He will continue to carry me through. I will continue to do my part. I'll continue to serve as I can and where I know I am suppose to. I love it! I love doing what I know God has for me. I stay in the word-- grant you I could probably study a little more. I'll stay in prayer. I'll keep those close to me that know the situaton who are praying. Ill keep asking them to pray. This-- this has changed my life. my relationship with God. Who I am as a person. God's Grace -- is Sufficient. I Know..  I don't just know but I KNOW that God is Good ALL the time.

My life with Epilepsy- Welcome to it.

I'd probably "blog" more if I had a laptop that worked- a few of my keys are broke and I can't really type. Oh well I guess.

This post is probably going to be pretty long so I'm sorry if its a book so if you don't waste you time reading it- I understand. If you do read it- congrats for making it through.

As a few of my Past post have said- I have Epilepsy. Epilepsy. I'm gonna be real. It has been hell. Pure- Hell. I have very few answers- but I guess few answers are better than no answers. Its not the Epilepsy thats just controlled by meds or just ok heres a med and your all better-- but its Epilepsy. I don't wish any kind of this crap on anyone but the people I have talked to that have this- or that have gotten any kind of glimpse into this- all say the same thing-- its hell. It effects everything. Friendships. Life. Friendships. Memory. More of Life. more relationships. More of Life. Its like you have to worry about ok- who is afraid of you? Who can you be with that isn't going to walk on eggshells around you? Yes- I have seizures- yes I can totally pick up if you feel awkward around me. I'm not stupid. Sure my brain gets a little uhm- Foggy sometimes but I'm not dumb.

Then you have the people who think that you have control over this stuff and use it as an excuse. HA! -- trust me, I've done a lot of stuff in my time as an "excuse" this is the last thing I want to do as an excuse. My heart -- hurts. I'm so torn. I just wish sometimes people could see my hospital bills. I have bills the size of those who are 65-- mind you I am going to be 22 in less than a month. I've had over 20 ER visits in the past 6 months. 2 in which they wanted to Hospitalize me-- for monitoring but I was non-compliant and 1- because I had a seizure at work and stopped breathing for 6 minutes. Seriously? an Excuse? Trust me-- I don't want this. I'll admit to you-- as I've said, I've done things in my life I never should have that have been for "excuses" I've pushed people away- Ive ran. Ive Hid. but this, there is no me using it as an excuse. The drugs either make me stupid, moody or sick. I get the worse of the worse side effects. They either cause more seizures or don't do anything at all. Ive been on High doses of meds, Ive been on low doses of meds- nothing has helped. I've had seizures ranging from dropping to the ground like a fish out of water -- to sitting down and completely going out and not breathing and going completely lymph and not breathing to horrible taste in my mouth to ringing my ears to smells that make you want to throw up that I can't even begin to explain. Yet -- nothing is explain through my EEG- because sometimes I'm so drugged up- im covered by drugs im seizure free and have 2-3 a week and the day i go it sucks and nothing hits, then I could have just one day where I have 2- God knows how many and then all I want to do is sleep and have this ungodly Headache.  and then I have weeks on end where I'm fine and I have really really faint ones. where I just know I've had one. and Nobody else. Its good because I don't even have to tell anyone. Its better that way. Bad because They are so faint and just auras-- they don't Hit the EEG either. I've only had one positive EEG my entire life. I was 16. Now -- nothing. Yet my MRI is the only thing showing anything. That I'm even going for a Higher functioning MRI and then they want me to go for a volume something thingy and something for my Hippocampus.

The thing that sucks the most-- I have all the support in the world from afar. My pastors, my friends. ETC. My church. Let me tell you and by that I am one extremely Blessed Girl. My sister has even been there for me. Asking me How I am doing. This has really changed our relationship. I'm blessed. But sometimes and maybe this is wrong. I'm not sure. I want more. I want someone to understand to hear the things I have to hear-- to hear that I'm not coming off with this stuff- to hear this stuff in these appointments-- to hear that theres only a 5-10 % chance of my seizures ever being controlled. Or that this process isnt an easy one.  My mom wont even talk to me about this. It sucks. I love her I do. I know she has her own Junk going on, but I miss her. Maybe thats wrong to say- but this is one of the hardest things I have EVER had to face.  Epilepsy- Sucks. I realize everyone has their own story, their own battle- People have cancer. Chronic pain. Etc. This is Mine. I just want those people to know my life isn't just what you see. I post stuff on Facebook- sure out of frustration- but don't judge. Don't tell me to just "Go to God", I know what God is capable of. I survived suicide, 9 years of cutting. An Eating Disorder that almost killed me and was given 6 months to live if I didn't get help.- yeah. God-- He got me through all that. His Grace. His Mercy. I rely SOLEY  on Him. I read my bible. Its not superficial. Sure i fall short some days. Sure. I say things I shouldn't- i am NOT perfect. I am not OK all the time-- Especially now. I am struggling-- not with my relationship with God- but with life. I'm struggling with the fact that so many people take it for granted. that I've taken it for granted for SO long and just when I've gotten to a point and Decided to Live... and Truly live -- not for me.. but for the HIM. for HIS purpose. His plan. Bam- I'm on 3 anti seizure Drugs- about to be on 4. 2 stomach drugs so those don't eat the lining of my stomach. - I might have to get my gall bladder out. Im breaking out in rashes from the drugs and  dropping to the ground and not breathing and have to cut drugs cold turkey and pray to God that I don't go into Status Epilepticus- either in Complex partial or Generalized. This Could Kill me. Epilepsy whether people realize it or not can be serious and unfortunately for me--- it is.  we have not idea why all of a sudden it just happened besides "it just happens".. I'm not gonna get cliche but as i said I'm just gonna be real- this - sucks. I know who God is. I know what God can do. I'm frustrated and this sucks. People are afraid of me and I have to face it every day. I just have to get up every morning and pray-- and thank God for those who aren't and for those who listen and for those who are willing to learn and willing to hear. Its complex-- and quite honestly I don't know everything about it. I don't know all the answers. A lot of stuff still freaks me out. A lot of stuff still makes me cry. A lot of the answers I have to take to my nurse friends or i have to just pray about. I just.. its hard. Its really hard. Seizures- Pain. Meds. all this. sucks. I'm tired. from it all. His mercies are new everyday with me. with us all. Im thankful for that because somedays I really REALLY need it. I'm thankful He still holds my life in His hands and just gives me the people I have. and gives me Himself.

Because even though I don't like the answers I still have Him.

Just a long overdo update

First and foremost before I write anything else- I have to say thank you to Mia, Nichole, Pastor Tara, and both my journey family and Exit 187 family. I'm so blessed and honored to have such incredible people in my life. I don't know how I'll ever be able to give back the way you all have given to me. Either through listening, encouraging me, helping me with something and just praying. I only pray everyday that I am able to give back to even just one person the way all of you have helped me. Seriously I don't have the words to express how thankful I am.
I've tried writing this like three times before and couldn't. Now-- I am. As many of you know-- I've gone through some test this week and some Dr. Appts. It's been-- a journey. A rough one. But I'm alive. God is good and I'm well, I'm alive. Some of you also know I'm a candidate for surgery- to have the part of my brain causing the seizures removed. Well- they don't want to do that right now re: the Cleveland Clinic, because its dangerous. We're exhausting all drugs. The type of epilepsy I have though that causes problems. I have Focal Epilepsy with potential of it being deep in my temporal Lobe. The issue is my seizures- they are what's known as intractable complex partial seizures with secondary generalized seizures. To sum it up in English- I'm having two types of seizures (maybe more) medications are only controlling the seizures for so long, then they stop and I have even worse seizures and worse side effects from the meds. The seizures are scary. I stop breathing I'm out anywhere between 1 minute to 10 minutes. The next seizure I have and people are with me and catch me- I'm in trouble- I get hospitalized and thrown in the monitoring unit at the Epilepsy center at the Cleveland Clinic. I say that as a bad thing I know it's not-- I'm just scared.im at risk for brain damage, mental retardation... Death. With the type of seizures I've been having. The side effects from them alone take me out for weeks. I have to record EVERYTHING i do. I have to find people I trust that I'm with to tell them what to do in case of a bad seizure, minor ones ill disappear and come back and just be tired and have a headache. But the severe ones-- I have to get to a hospital and inform people on what to do and it's scary. Because If they don't know what to do, it's life or death.
I'm at a point now where I might have to quit going to church or sit outside church or something. I'm 21 years old and don't want I be babysat. I want my independence back yet-- I'm losing every once of it almost till I can figure out how to control these and get "better". I'm tired of medication. I'm tired of depending on people. I feel like I'm nothing but a burden most of the time now. So it's been really hard. But that's the update. That's the best I can do right now. I'm thankful for my friends. My church. They have been so supportive. I've cried so much to them. Heck I don't even know where I'm gonna live and or how I'm gonna get to and from work now and they still are like tab-- your gonna make it. Always helping me have an optimistic attitude. I'm blessed still. God had been so Good to me. Has my situation different? No- absolutely no. But in know I never walk alone. Even when my friends aren't there and I've just woken up with a fever after a seizure at 3 am.. God is still Good and still has a plan. He is either gonna heal me or gonna walk with-- no carry me- through every step of this healing process. Cause I can't do this by myself. A verse I've been holding onto is ..Even to your old age and gray hairs
I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you. (Isaiah 46:4 NIV)