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.
Thursday, August 8, 2013
Monday, April 22, 2013
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?
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
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
Sunday, March 24, 2013
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.
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"
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"
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
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.
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!!!
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!!!
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