Monday, April 22, 2013
Center of it all.
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?
Saturday, April 6, 2013
Because even though I don't like the answers I still have Him
Sunday, March 24, 2013
The unexposed heart
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.
Wednesday, March 20, 2013
"Let me be singing when the evening comes"
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"
Tuesday, March 12, 2013
Compliant v.s Complacency
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.
Thursday, February 7, 2013
Transparency at its finest
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.
Thursday, January 31, 2013
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.
Tuesday, January 15, 2013
The Beauty of Life
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.
Tuesday, January 8, 2013
NOT my Defintion.
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.
Monday, January 7, 2013
Just have Hope.
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.
Thursday, January 3, 2013
My life with Epilepsy- Welcome to it.
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.
Sunday, November 4, 2012
Just a long overdo update
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)
Wednesday, July 28, 2010
Real God, REAL LOVE
Matthew 10:38-39...
I knew what it meant to “take up your cross”. To me it means take up everything that has ever been thrown at you, and take it to God and continue on with life, No matter how hard it gets just do it.
I know the scripture and I know what I'm suppose to say. What it all comes down to is I know religion, But to say I knew (know) of this personal relationship with Christ, I would be lying. I mean dont get me wrong, I did have a relationship with God at one point but these past few months I have Just forgotten about and lost all focus of it. But before these past few months my relationship with Him was not the best,I wasn't honest with Him, I wasn't open, Now I know what I thought was there, wasn't real. I have not trusted Him the way I should, None of it. Now that I look back on it, it was the crappiest relationship ever. The cross I knew to take up and carry, even during the hard times, I threw Down and walked away. I stopped Going to church on Sundays, the Wednesday thing had just became a “ thing to do”.
Last Night was different, my youth pastor didn't even continue on his thing with purity ( I'm not gonna lie, I was kinda happy about that), but he went somewhere new. I can't remember everything he had said but, one thing I do remember was the verse Philippians 1:6 ( someone had actually sent this to me about a week ago but I was like whatever it didn't make sense to me then).
“Being confident of this, He who began a good work in you will carry it on to completion until the day of Christ Jesus.”
After He used that verse ( he said it like twice),I just said oh my gosh. What the heck have I been doing. He just kept going on about his dreams he had and where God has him, and how it wasn't because of his WISDOM or his KNOWLEDGE, but because of the Lords.
Let me first say, I didn't want to be there that night. I was sick and not feeling all that up to par, but I still went. After he was done saying everything I heard something I have not heard in a long time. I just cried, I didn't even know why I was crying. I just was, but it wasn't over anything I had going on or anything I was thinking, But the tears Just flowed, But I finally heard from God. It was more clear and Loud than ever. I wasn't even looking for a meet with Him, I wanted to meet with Him, I wanted to find him again,but I had gave up on it. But He found me, I wasn't doing anything, just sitting there against the wall, way in the back.He said
Beauty of His Grace
Lately I've been thinking about Grace and the meaning of it. Through that, I have come to the realization that so often we forget about it.
You see, I was listening to "How He loves" by Kim walker and my younger sister had stated " I don't get it, I don’t understand it - We are his portion and he is our prize,Drawn to redemption by the grace in his eyes ,
If grace is an ocean we’re all sinking- that makes no sense! .” I was caught off guard, I know it’s a song and she may not have understood it but our conversation carried beyond that. I had told her it was talking about Grace the response to me saying that was – “and your point is”.
I am brought to the story of the Samaritan woman at the well. She was married five times and then she was in a relationship with some other woman’s Husband! ADULTERY! Jesus Shouldn’t have even spoken to her! Jew’s don’t even normally walk down the Samaritan Road, But He did (Go Jesus for breaking out of the Normality of life back then.. aren’t we called to do that- that’s a WHOLE other blog). He seen the woman and asked her for a drink of water. She looked at Him “You are a Jew, and I am a Samaritan woman. Why are you asking me for a drink?” ( John 4:7-9) . Right there it shows me something completely different than what this story really says (or does it? ). I am no Bible scholar so I am just going to say what I feel in my spirit that God has been speaking to me through this woman’s story.
In true repentance run to Him and Let His love change you
-Tabitha







