Darkness of epilepsy

November: it's become the easiest time to become vocal about something that's destroyed my life. Yet no matter what I still don't like talking about it? Weird I know.

November is Epilepsy Awareness Month. You know, just like October is breast Cancer is Breast Cancer Awareness Month and Everyone wears pink in honor of those  who fought and are fighting those awful disease. I wore it for my friend Jess's mom. It's Just like September for childhood Cancer awareness month- where you where Gold or Yellow or have the color up. I wore it for my little friend Ava. She lost her Battle to Brain cancer and when I got that call I lost it. She was only 6 years old. Well you see- I wear purple. Not just for me. But for my superhero Luke. My friend Kalissa, Logan, Morgan, and Never forget the AJO movement.

You see- there's A lot to epilepsy that you don't know about. There's different types.  There's also different types of seizures. There's a ton of different type of medications.  There's different treatments for different people. Some work some don't. Some epilepsy is treatable some isn't. Some are hard to treat, some all you need is more sleep- not even a pill. Some- you need 4 to 5 seizure medications, a special diet, balanced sleep, certain things you can't do. It completely alters your life. Not only your life but those around you. 

I'm writing this because Epilepsy has this certain Darkness, this Certain stigma surrounding it. Its contagious. It's this. We're afraid you'll this. Or your this. 

I'm fighting for my Job, I'm fighting to just feel better, I'm fighting for normalcy. I'm fighting for a life I once had before. I'm realizing I may never have it. This month though I'm fighting to shed light on this stupid disorder.

I have Epilepsy. A lot of people know this. I was diagnosed at 15. Over the past two years it worsened. I've gone from being on one drug to four or five at a time.  To now being on 3. 

At the age of 21, I worked a full time Job in management. I had just bought a car. I had my own apartment. ( yes I was able to drive at the time after years of not being able too) a few  months after getting my car- I wake up on the floor at work surrounded by paramedics and the fire department.  A few weeks later it happened again only 911 wasn't called I was at home I woke up with a mouth full of blood. Or falling backwards in a post office and a stranger catching you and waking up surrounded by the paramedics and fire department in the hospital with cords and tubes everywhere that one was the memorable one. 

I've lost that Job, my apartment, my car, my license. I've been bouncing around place to place because a: my health and the health system I am in. b: I lose my job again. Nobody wants to keep someone who has appointments all the time and has to request off and has ER visit quite frequently.

I was living the life. Do you have any idea what it's like to have friends to be able to come over and hang out and do what you want when ever you in the privacy of your own home? Then to  have it all ripped away and to be totally dependent on everyone on around you?  To still be that sick girl?  I had people take me in. I had to switch in an out a few times. People felt bad for me cause I was the "sick" girl. I don't have a solid family. I know they love me- but they aren't here. 

I literally lost everything. My Epilepsy destroyed my life. 

This past month my seizures started becoming more controlled. But I found I was having more side effects from the medications and now awaiting what's next. 

And I'm losing my Job. 

But what I've Gained is Knowledge!  I've learned. How people view me. How many people see me as a person. Some people suck. Some people are the most Gracious Human Beings Ever. I have help from places I would 

never imagined. I learned its expensive too!

I've met people in the same battle who have encouraged me. And vice versa. We can understand each other. We try to be there for each other as we can, because we know what this battle brings. When I hear about Luke who is 5, going through crap with Epilepsy, my heart breaks. or Logan who is 2 who has a severe form of epilepsy- it gives me no room to complain. and Kalissa and I can Talk for hours on the phone because we understand each other.  Then there's Morgan- she Lost her sister to Epilepsy. She stands up for Epilepsy through everything. 

More people die a year from Epilepsy than breast cancer. Epilepsy is one of the most misunderstood neurological disorders. Statistics speak for this crap. 

Epilepsy is scary. I get scared. Im scared. But then I see the 5 year old, and 2 year old, go through this- I have to be brave. Lee Ann, Luke's mom,gives me so much strength and Hope. Epilepsy is needs light- it needs truth. It's not just a seizure. Its so much more. It needs more. It screws things up. It wrecks lives and families. 

I have amazing friends. I'm learning this. I don't give up. I'm so incredibly  thankful they are all here.

But if it weren't for them I don't know where I'd be or what I'd be.

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

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.