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

Not for a moment

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

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

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

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

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

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

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

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

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

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

Hello World :)

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

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

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

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

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

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

So thank you to everyone. 

Im tired. Im going to bed.

Peace out.

Just a long overdo update

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