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.
