My life with Epilepsy- Welcome to it.

I'd probably "blog" more if I had a laptop that worked- a few of my keys are broke and I can't really type. Oh well I guess.

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.