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

"Let me be singing when the evening comes"

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

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


So tonight I'm singing...

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

Not for a moment

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

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

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

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

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

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

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

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

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

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