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.

my deepest ache

Its been a while since I have done any updating. Any writing at all actually. Just because Summer has been here and its just been CRAZY. My life is anything but - quiet. I am very busy. I work. I volunteer. I have friends. :)  Its awesome

So far this summer I have been camping, to Cedar Point Twice, Tons of Sleepovers, I got to See Jamie Grace and Casting Crowns and For King and Country. I witnessed my Nieces first swimming experience. and I am going to GEORGIA AND a Baseball Game :)  its been fun and real :) thats all the good stuff!

In between all this Ive had multiple ER visits and Back to my Epileptologist. and a  6 day stay in  the freakin Epilepsy Unit, again.Yes I will go from the Good, to the bad. I'm sorry I am not trying to be a debbie downer. Just keeping it real. Or whatever. I'm just frustrated and tired. :( I am an advocate. I will talk about this stuff to the day I die. I will explain to people about seizures and etc. and what to do. But for some reason when it comes to my case- its hard. its embarassing. I cant do it. Even this last hospital stay it was hard talking to my Doctor in full detail about my first experiences with my seizures and etc. I nearly cried. I HATED IT. Its like reliving it. I hate it.

So far this summer. Ive had some major Partials at Church, Home, camping, and work. 1 grand mal while sleeping! that Good. its an improvement to what it was. The ones at Camping though was it. My Doctor Said thats it were putting you in.  BUT OF COURSE. they didnt catch those ones. they just caught my normal ones. Yet I still have my other ones every so often if I miss meds or am way over sleep deprived or things like that and overexerting myself.

This time around However they figured out its coming from deeper in my brain. They put in to thin line electrodes in the sides of my face. to measure my  Brain waves from deeper in my Brain. Thats where they really think its coming from. I left with all my same meds. It was a long week. I had so many episodes- I couldnt eat, I couldnt drink. it was horrible. I dont want to do that again.I was just. Exhausted. I had visitors all week. But it was just exhausting. I felt horrible. The kinda horrible that just made me wish all this was over even more. Usually this is tolerable. Now- its all just questionable. We still have NO solid answers. We still dont know what to do. My Doctor wants to do surgery but we have to wait. and I just want my life back to where I was a few years ago. But I see no form of that coming in the near future.

Upon release from the Hospital I had to get a clearance form for work. and Of course- it says: No ladders no heavy machines and No driving.  :(

It screwed everything up AGAIN. I HATE SEIZURES. I HATE EPILEPSY. I HATE BEING SICK. I cant get promoted now. Womens merch or anything at Old Navy involves Ladders- except Pricing and even that makes my head hurt. they called me asided today and told me Nope no ladders no hope pretty much. to please not climb ladders. I know its for my safety but it sucks. Ive been fine this long no falls. I know my limits.  im just so overwhelmed. just give me a helmet and bubble wrap and call it a day. might as well. or put a scarlet letter on me.

my world is just so different. its so, hard. i cant do much. I feel like I try so hard to figure out things and make my life ultimately better and all I keep doing is makeing it worse. I am a problem. Ultimately I am a problem. People are afraid of me because I might have a seizure. I might get sick. i might complain at the wrong time. I might do this or that. but I try not to. I really do. but sometimes it just happens I cant help it. I do I wish I could explain this. I can. Its scary. I get scared. I am scared. Im really scared. Im afraid i might just lose everything. Im fighting for it all, again. Im tired of this again. I dont want that. I need to not do this again. I want to be an adult. I want control- well God to have Control. But All I feel is Chaos. I deal with this Everyday. I dont know if many people know that. Quite frankly I dont care. but I do. Everyday. I wake up extremely weak and tired from the meds.. or somedays i get luck and wake up 100 percent fine. My memory sucks. actually writing this I had to ask my room mate what I did this summer.and what i had planned. somedays i have no apetite and somedays I have to much of an apetite. but if i go off these meds nothing else works to control the bigger Complex partial siezures and Grandmal siezures. So its a win lose situation. I just dont know what to do. somedays I want to quit all the meds. Some days I want to just quit 100% all the meds and give up and see what happen? I mean God heals right?  Then I realize thats absolutely stupid and I have life I want to live and people who need to know there is Hope and that hope i need to trust and believe in . after all it is tattooed on my right arm for a reason.

i have this fetish for anchors. maybe fetish is an awkward word. i think it is. but oh well. but i just i see one and i see hope and Im remind of the Cross. I reminded of the fact that no matter how hard this is. no matter how this sucks i just have to hold the hope that was given to me through that. and lately through that i just, its been really been speaking to me. because this really sucks. i somedays feel like I have nobody. its quiet. i pray. i just pray. and pray. because there is nobody. i cant just say. i had a seizure. my right side is numb and my body feels wierd. or my left side is shaking. i did that once and my friends looked at my life i was crazy. :( i felt SO awkward and bad like I ruined the party. or when I walk up to someone at church and im crying cause im scared cause I cant walk due to seizures. yup. even more awkward. or not being able to talk but seeing someone. and knowing whats going one.  stupid.   i just.  all I can do is pray. i know He is there and He knows whats going on because Jesus endure the pain of the cross. the blood, the beating, the wood. all of it. for me too. ya know.  i hate seizures. i hate epilepsy. i hate this. i hate being "sick" i hate this. i hate this. i hate this. I dont hate my life. but i hate this. I am one incredibly blessed girl. but i hate this.

my deepest ache is this- being a lone in this battle. nobody to physically walk through this. nobody to talk to. nobody to deal with me through this. nobody to stand with me in the appointments. nobody to make dr calls when I cant. Its why I miss so much information. nobody to understand. my deepest ache is a void that cant be filled. my deepest ache is a void that is deep.  my deepest is forever done. I am alone. physically in this battle.  Mentally. Yes. Because Nobody will ever understand unless your there. Maybe its bad to say I want my Mom. Or my Dad. I dont know. its hard saying that. all I can say Is I have my Abba. I have the strength and peace from Him, Hence why Ive come this far.

I have my friends and family from afar. who love me from afar. who dont get and will always tell me that but are there anyway to just sit in and come visit and make light with me. hence why I am one blessed girl. but I hate this.

Center of it all.

I write. I'm a writer. I write organize my mind. I write to talk to God. I write to explain myself. I write.... Just because I can. I write because its the one place I make sense. I write because it brings peace to every part of my being. Singing brings peace to some. Music. Instruments. Etc. I write.

It takes me a while to write out these things though. It goes through a process. First some prayer- some loss of sleep. Then written in my Journal. Then after I weed out all the un needed stuff, I post here. A blog ( I still laugh at it). I think the world needs to know. For some reason I find my self compelled to write here.

I've been thinking about the brain and how incredibly complex it is. I won't lie- its been pissing me off. ( I probably shouldn't say that but I'm gonna be Honesty.) No matter how much research is done, no matter how many drugs are out there- they have yet to master it. They have yet to figure out every detail, mechanism, all that it can do, why something goes wrong, why something works exactly the way it does. Even the country's top Neurologist, Neurosurgeons, Neuro specialist-- I mean you name it. They just have assumptions as to "why" something goes wrong. I've met people who have told me stories of surgery, stories of tumors, of seizures, of memory Loss for no reason,-- I mean the entire body is so incredibly complex and amazing if you think about how we are held together. But the brain --- specifically is the center of life. You can't transplant it. Can't always fix it- can't bring back memories lost due to brain damage.

You have the heart that that beats/ pumps the blood to all the different organs , Lungs that breath, feet that walk, hands that clap, kidneys that detox the body and so on so forth- with out the Brain you are not doing any of that and more. If something is wrong with your brain- you are going to be a little --- off. Trust me on that.

You see, you can get all kinds of transplants-- heart, liver, kidneys, spleen, eyes, pancreas, bone, intestines, and even tendons! But-- Brains. Nothing. You can't get a new brain, or even a fake implant. You can't get parts of your brain taken out and the other part of your brain picks up for what's lacking. Weird right? That some kids that suffer certain types of seizures can have half their brain removed and still have the chance to living a perfectly normal life! Then some- have just a part of their brain removed and their lives are screwed?

Your probably wondering why I am talking so much about the Brain. You see its so intricate and complex. Yet no one knows exactly why. My aunt died due to her brain pretty much dying before the rest of her body. As soon as they took her off life support though- it was only minutes. Her organs saved many other people's lives though. Crazy right? THAT'S not even the reason why Im writing this. That's just to make a point.

You see- when their is something wrong with your brain- their is something wrong with your entire body. Their are going to be signs and symptoms that are going to show. Your Brain is going to be the center of Life. It's the center of everything. Hit your head the wrong way, you'll know what I'm talking about.

Well- if your relationship with God isn't based or founded on the rock its going to be the same. God is our center- if God isn't the "brain" of my life, Isn't the rock- I'm going to have problems. I'm going to find myself lost.
God is so intricate- nobody can understand Him. He is God. People try. But they can't. He is God. If he isn't center- if we don't start revolving our life around Him- our heart and lungs are going to fail. Our kidneys are going to shutdown and were going to have no way to de-tox! See where Im getting at here?
We need Jesus. Our very creator. The one who knit us together in our mothers wombs- we need, because He is the ONLY one who knows what's going on. No doctor, no person etc. Just HIM. We need Him to clean up our Junk. We can't do it alone. He makes ALL things new.

Who's your Brain?

Where's your Focus?

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"

Compliant v.s Complacency

We can - in any situation become - Compliant. Complacent. or Just flat out complaining.

When I was praying yesterday and heard the word "compliant" I was a little caught off guard and confused. I just googled the word for fun. Compliant means to be ready, or disposed to comply. Another definition was to submit. -- Hmm? Submit. Now Submit means to " yield or surrender to the power or authority of another." So Hold on to that while we keep going :)

Now - Complacent: marked by "SELF-satisfaction" especially when accompanied by unawareness of actual dangers or deficiencies." -- its means you have come to a comfortable place and your ok with it. Your ok with how you are, how you act, how you treat people etc.

Then Complaining is " to express dissatisfaction, pain, uneasiness, censure, resentment, or grief constantly" - seriously? I think everyone knows what complaining is.

Now- now that I put that all out there for you lets pull it all together. I'm gonna work backwards. :)

So often we become focused on something that is wrong. "Thats wrong" "The music is to loud" " they did this" or " this is that" we COMPLAIN about something. Then we have those who are just naturals at complaining about problems. Then have become so COMPLACENT in their ways they don't even realize it. They are ok with where they are at. They love God- Go to church on Sundays, yet don't make and intentional encounter with who God is to truly make a change.

Theres more to life than to where you are at. There is more to life than to where your sitting. Whether its the same pew, chair, or classroom every sunday. Heck- maybe its down to that same BORING lunch you pack everyday. God is calling you to more- something more intentional, something REAL with Him. He doesn't relent till He has it all. I'm reminded of Jesus Calling the Disciples. They were Just ordinary people like you and I but they were all called to something more intentional, something higher. Something bigger than themselves.

Key to that though was submitting what God. Being compliant. Being in complete surrender. Giving up everything you want for what God wants for you. James and John left their father (Matthew 4:18-22) Peter and Andrew left there nets they were using to cast to catch fish. Jesus legit Told them they were going to be more than just "fishermen" but they were going to " Fisher of men' if they were going to follow Him. Then there was Matthew- a tax collector. Just because He was a sinner didn't mean Jesus was giving up on Him nor leaving Him-- so Matthew went with Him.you seen the change.

God has called us all to be a disciple I believe. He has called us all to change the world around us. He has called us all to wake the world around us to life abundantly that God had come to give us- but we can only do that if we let Him do that through us. Because its not about us. Not about what we have done but all about what He is doing and wants to do. So get off your high horse, its not about what you want, your problems, fears, struggles, etc- maybe they arent about you. Maybe they are to serve a greater purpose. Stop complaining and Start praying.

I've Got sunshine on a cloudy day :)

Good morning from Rainy Cleveland. Its Cloudy and gross and it gives every person every reason to have a bad day.

Am I right? I know I wasn't exactly having the greatest start to the day either-- or the past few days. I have been struggling. Struggling with a stuff that I don't know how to talk about. Stuff that people don't understand. Stuff that scares people away. Stuff that scares me. Stuff that I don't understand,yet walk around talking about as if I can answer every question about and yet I may be able to, but I can't fully tell you why because I don't know why.

That has been the past few days for me- I skipped a bible study (not the end of the world) and just hung out with a friend. It was well overdo. I needed to pull myself together and think and pray and just be. Not overthink anything, not get any crazy advice from anyone, but just be and throw a little fun in the mix of it. I love my life, my friends, everything. I am so incredibly blessed. I am--- Let me explain a few things to you.

Yesterday- I was praying about my situation with work, life, health etc. Sunday- I heard a very inspiring message and just altogether was very great day. I was able to see a college friend kick off a church in my hometown-- Just my heart is there. But the pastor was talking about how we don't necessarily understand whats going on for us because it may not be for us -- but for those around us. To show them the Love of Jesus through us and in us. To just Hold on. uhm? Yeah. That is Hard. But Today that Reality sat in and sat in clear.

I realized I have but NO choice to live my life a little differently. Everything is going to have to be done a little--- differently. I am opting for the time being to give up the idea of driving. I am 22 years old. Just 9 months ago I was able to buy a car was FINALLY able to get my license had my own apartment etc. Now Im a 22 year old living with a family that took me in, I am on medical leave from work till may, I my apartment, I cant even pay for medication until work is figured out. Thats negative crap right? yeah I know. I am by no means saying this as pity party for me. or a poor Tabitha. NO. because I am alive. By the Grace of God I am a live and guess what He is STILL providing for me I am actually loving this time off work because it gives me more ministry time.I get to serve more. I get more opportunities opened up to me!!! God is SO faithful.

There is a hindrance yes. I cant do everything I want do,to not driving. But- I make it work. God makes it work. I am so blessed with wonderful church. Im finding new ways to make things happen and God just-- Keeps blowing my mind. :) I am so excited to whats to come. So excited for whats to come in Cleveland. and Northeast,Ohio. I grew up in youth group at the age of 15 saying I was going to be a world changer. Till this day--- I still believe God has called me to that

So yes. I've Got sunshine on cloudy day!!!

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.

Transparency at its finest

I have never been really good at putting how I feel into words without being over emotional or dramatic. God and I have truly been working on this for years. Something Goes on-- its like everything is horrible and I hate life. Or Everything is just lovely and beautiful. But over the past 2 years to year and a Half- I've learned a balance between that.

I started off by saying that because well- all that I am about to say even is hard. Unless its something people physically see, I don't talk about it. I can talk about the Epilepsy. I can talk about seizures. Thats SO easy. But this-- not so much.

You see- that past two days, I have been quite a wreck at work. Messing things up. Dropping things. Making the wrong products. Etc. I have been really distracted. Normally its been because I don't feel good. Easy to blame it on. Not saying I didn't. But I know it wasn't the reason. Yesterday while walking to work I was reminded of my fire from when I first got saved. I was broken. I went to work crying. Rewind. I went to work- crying. sick. distracted. hurt. sad. distracted. and just all kinds of NOT myself. You see when I was 15 I was convinced I was going to be a " world Changer". I was convinced I was going to travel the country church to church convention to convention and speak to all the teenagers about who Jesus was and what He did and was doing in my life. I spoke in my youth group. I was a Leader. I then moved up to bigger things and etc. I then Interned.

Then something happened. I made mistakes. I fell.I got back up. but I kept falling. But it wasn't like the type of fall that you fall and get back up an choose Jesus fall. it was the yeah I suck- nobody cares anyways- I'm gonna keep going this way without anyway without anyone knowing fall (or so I thought.) As I said I played that dangerous Game of I love Jesus and I know all the answers yet I really hate my life. For quite some time actually. My Junior year of high school going into senior year I was diagosed with Epilepsy. I had to STOP everything. I left my old church started a new one. I was a cutter. I was stressed beyond was I thought I could take. I was trying to-- but to only a level. Then not even a few months later- my Dad was killed. Thats what pushed me over the edge. I sought acceptance in any male relationship I could find just to end up getting hurt more and more in the end. I did some really STUPID attention seeking things. to get people to notice how much this hurt me. I was hurt. I didnt know what to do. Then I went away to college- things only increased. My relationship with my mom was zero. my family and i never talked. I turned back to things of the Past and this time--- well, February of my Second semester I was told if I didn't get help from an eating disorder I would die in 6 months. 2 months later I found myself in a recovery home in the south. A year later I attempted suicide. Almost succeeded I was hospitalized for 2 weeks.


My list of wrongs can go on and on and on and on. Today all that ran through my head. You may ask why? maybe because of what I said at the beginning? due to being dramatic? or etc?--- No-- you see. since I was 15, I have known. I was called to ministry full time. Ive been running. Ive been running from the call of the very one of the I Love. I have questioned. I have cried. and yet. Its been right in front of my face all along. Ministry is hard. Right now I work at Dairy Queen and its hard. Ive lost my passion for ice cream. its boring. i have nothing for it. I want to quit. i want something more for my life.sick or not its worth the sacrifice to .... come home and no youve just lved for a reason. or to stay up all night doing something more. Praying with people. crying with people. Talking. Just loving people. having bible studies etc. Even all the adminstrative stuff. I LOVE ADMINISTRATION AND ORGANIZATION. I have been so blessed. SO SO blessed. i have a roof over my head. i have water and food. etc. I dont want to run anymore. Because no matter the sacrifice. no matter how much it hurts. He is the worth it all. He has not brought me this far to leave me.

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.

The Beauty of Life

I haven't posted in a few days so I - figured its time for a post. Not a negative pointless one either.

You see I could complain- we all could. About this or that- how this isn't working out right, how that fell apart. How that person did this. So on and so forth. But I want to solely focus on the good. How blessed I am.

Nobody comes from a perfect family :) your probably wondering why I put a smiley face? Because it means that YOU, the one thinking about how messed up your family is, or how messed up you are or how you've messed up your family--- yeah your not alone. You see- were not because on some level we all have some sort of dysfunction.

As a teenager I had a lot of ... Problems. LOL to say the least. I caused a lot if problems. But as I grew up and grew away from that area of life I realized I was not the only one like that. A lot of people had problems to. Family problems friend problems. Health problems. Etc.

Through all that though God... God is a God of Restoration- a God of Hope.

This past week I experienced something I've never experienced. My family. MY family came together. We sat together. We ate together. We joked together. We had talked. Shared life. Something so -- I've prayed for for YEARS, is a relationship with my sister. A strong one. A solid one. A relationship with my mom. Although I know we still have a ways to go. A lot of healing etc. God is a God of Restoration and Hope.

Well- my little sister and I get a long well. My brother and I get along well. Over the past few months. - my Older sister and I have been talking :) like Talking talking. About Faith. Life. And ETC. we had a few tics but who doesn't? Trust me it's way better than it's ever been.
Right after my Neice was born she started talking to me about Baby Dediations and how she could do it and what it was about and we started talking and before you knew it- Journey was having Baby Defications and She was signing up.

I can't tell you the last time my family has done anything together as a family. But this really brought us together:) they talked about the service more than I did, I felt kinda bad. But Everyone was there- after years and years of prayers and almost giving up, we had two lines of chairs taken up at Journey-- it was really hard for me to worship at first, I didn't want to make them feel awkward- but I said to myself it not about them it's about who HE is and what HE is doing.
Bella- means heroin , but it also means Gods promise- and something hit me when I remembered that--- Gods Promises never return void. They are always true to His word. That little Girl- is going to be something Great- I'm praying for her and Have been. That day she was dedicated to God and Sam and Macho brought her forward ... Was huge. Big step. :) greater things are yet to come.

Hello World :)

I'm up at the weirdest hour of the night writing on a blog I said I never would write on. I'm getting better at this though. I'm starting to like it to.

You see- for years I use to be the type of person that would broadcast every detail of my life to any person that would get close to me. Over the Past few years though I've pushed just about every person away and stopped telling anyone anything because I've realized just How unhealthy that really was. I was a STUPID STUPID teenager. To say the very least. Now I've done the complete opposite--- its been uncomfortable for people to HAVE to know whats going on. I push people away and only tell those closest everything and that's like- 3 people. Literally  And one of them I only tell because well-- someone how She became part of my life because she understood and most of the time I feel bad- but she understands.-- not like because she gets it but because shes been through school and all this stuff and knows about some of this stuff. So yeah- she gets it- the meds, the DR lingo, all of it. I feel normal for once when I talk to them. Does it stop me from Praying? Nope. Because trust me it hasn't I'm here today. I'm standing. and Stronger than I ever have been.

. I know everyone else means well but  I've stopped talking to them. Or I've learned to change the subject. You see- everyone Else I feel like its a burden or they don't get it and its a problem. Or they just don't want to hear about it unless they ask. If they don't ask. I don't tell. Or as I've said before they are afraid of me-- like I'm some kind of monster. 

I'm a Strong woman. I've learned this too. Normally-- I don't say that. Normally. I would throw my white flag up and curl up in a ball and say I quit. But I'm NOT. I refuse to. I can't. I won't. God's brought me way to freakin far to let the enemy break me now. I may be sick. I may have days where I get weak. But then- that's when I have to look up for myself. When I personally have to choose to get up off my butt! ( yes I just said butt get over it) and get on my knees and pray and do something about it. I remember hearing something a while back- " you don't need a third party to talk to God when you can talk to him for yourself"---  I don't necessarily verbalize my prayers and I'll be honest, Ill sing and dance and cry and  I'll write. I write and talk to God all at once. That's how I talk to God. Everyone is different. This ... this Journey I've been blessed to be on has changed me. Has changed my way of dealing with people, working with people, talking to people, addressing people, talking to my FAMILY.  let me tell you-- its been HARD. I've had days I've wanted to flush my meds. I've had days I've wanted to just curl up in a ball and cry. I've had days where I have done nothing but cry. But there's been one thing that's been consistent in all this-- HIM. He hasn't left. Even though I've been -- everywhere. literally. on the charts from moods to sickness to everything. God is still God and still capable of doing what He is does. even when I suck. He doesn't change. He never fails. He is God! He just is!!!!  I'm only strong because of HIM! because He has shown Grace and Mercy on my life through so much and put the people in my life He has to continue to influence me to rely on HIM AND HIS GRACE and His strength and His comfort to get through this. Because there is no other way I'd get through this. NONE. ZERO!!!

Tonight- I'm writing this because I'm extremely thankful. thankful that I have the opportunity to pick up the bible. to Text my friends.Thankful I have friends who are real and straight up with me when I am out of line. That I have Pastors and a Church that blesses me so much. Lifes not always easy. Everyone deals with something. Everyone Has a Story. I learned Last night- My RA from College Little sister had a kidney Transplant a while back and is now having some complications from it and all this time I thought this Girl was one of the strongest/perfect people I know. She has a story. Her family's courage and strength and dependence on God is just amazing and Beautiful may I add. I am Blessed. Too.

All this to say-- even on my Bad days God is still God. Still Capable and will do what He does.  We all have a story. 

So thank you to everyone. 

Im tired. Im going to bed.

Peace out.

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.