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.

God's Greatest triumphed the toughest

Hi- Welcome. This is my Journey, my walk, and life from where I see it. I know life isn’t always easy and I know everyone has a story. In fact I love that God is working on us all. I love that God is bringing us all through something different because I am a firm believer that through OUR pain is someone else’s breakthrough. Trust me by those in my life and hearing there story- I would definitely NOT be the person I am today on any level. I am blessed beyond all reason. I’m not perfect. He’s still working on me. It’s been a beautiful Journey Thus far (notice how I didn’t say easy).  I just want to welcome you all aboard this life of mine and where I am at now. 

                  You see- when I was 16 I was Diagnosed with a seizure Disorder- Epilepsy. At first there was no known cause as most cases of Epilepsy. I went through a few Test after having just two seizures and was put on some medication and was told I wasn’t going to be allowed to drive. I wasn’t going to be allowed to swim. My youth Pastor at the time almost didn’t let me go to Youth conventions due to the activity of Seizures. Then I went through more seizures. I then had a pretty bad seizure while I was mailing something by myself at a post office- not including the many I’ve had at purity conferences and etc. It was a pretty Hectic few years. I was angry. I was frustrated. I then had more test done- more EEG’s, cat- scans, MRIs, some test that I can’t even tell you what it was except I had to stand strapped to a bed for 45 minutes ( not really my idea of fun.) Finally after all the test were complete I had another appointment with my neurologist- He said he had answers 1: my seizures were generalized. 2: my seizures were caused by swelling near/ around my hippocampus. He had then preceded to ask me if I have ever had some severe head trauma and of course I don’t ever remember anything. Then my mom speaks up and says well- she was hit by a car when she was younger and landed on her head and was pretty much lifeless on the ground. The neurologist then had many of his unanswered questions there. Yet I still have none of mine answered here. Why now? Why did none of this happen then? And etc. Well—all He could say is my Brain was trying to grow in that area and couldn’t properly resorting in permanent brain damage.—We found medication that worked first time around. Praise God. So I was on that for about 4 years. Till now…

I am now 21 years old. I work full time and am a full time training manager at Dairy Queen – yup I get to play with Chocolate and Ice cream all day J  Beginning of 2012 I started having horrible migraines to the point I couldn’t even get out of bed or where I would have to sit down immediately and just cover my face. I would get dizzy and nauseous. It would happen suddenly, I would wake up with it. I can not tell you how many time I would end up in the Hospital due to this. Id get a shot for pain and Zofran for Nausea. But it would get to the point nothing would help. Well in June 2012 I took to much Advil, NOT on purpose.  I had to go to the E.R immediately the headache wasn’t going away. I was throwing up. I was getting dizzy. I just knew something wasn’t right. I was taken straight back. My roommate was with me. The headache wasn’t easing up. I was taken back for a cat scan and then an MRI. When they received the results for both of them they found the swelling again and that I had possible lesions and bleeding around it as well. I was put on more medication and steroids to lesson the swelling and was taken back for more testing. I didn’t have bleeding but I do have lesions and swelling. I was told the fear for the swelling was it getting so severe of it compressing against my skull. That’s apparently no bueno. Ive been monitored ever since. Bad thing about all this is that its triggered more seizures. I’ve had minor ones—just passing out or just collapsing and going into blank stares to major ones--- passing out and completely going unconscious and seizing waking up and remembering nothing. I had a really bad one at work a month ago and I stopped breathing. I have an amazing manager and work staff who took care of me and called 911 right away but—the fact is I had one at work. Work hasn’t been the same. I haven’t been the same. Ive been really sick since then. I had another minor seizure at work 3 weeks after I stood up  and went right back to the ground. I was aware of what was going on but I played it off as if nothing was wrong. But I had to go home.  I don’t like being sick. Part of it is the meds part of it is just the seizures completely screwing up my head and body—and its hard for me to get anyone to understand that.  But it really does.  Since being so sick and seizures happening so frequently and not really having much support around me with it – ive been forced to either A: Stay in my room all the time B: Opt to go to the Bathroom of wherever I go all the time when Im sick or C: Suck it up and tell people about being sick despite the response I’d get from people… I’ve chose ALL  the options a lot.. Ill tell people but Ill still disappear to the bathroom,  and A when Im at Home  I just stay in my room- my family doesn’t really understand. Now by telling people—ive been overwhelmed by the support by some of my friends—especially with how much I have been in the hospital. This goes back to what I said earlier- I am so blessed. I’m still working on actually reaching out for help whenever it comes down to having a seizure in public. I’m praying that never happens. Because I’m not sure I’ll ever be able to- especially at church—as I said He is still working on me.

                  I’ve recently started a new medication- again. With hopes of it working. If not well the Lord apparently has better plans. Its just been so amazing to see how God has really been working on me through all this. Don’t get me wrong I still have my bad days- He’s still working on me. But I’m just so blessed that the Lord has chosen such a time as this--- my seizures have NEVER been this bad. And just a month ago after I stopped breathing during one at work I was SO angry and bitter and hated everything and spent nearly a week in and out of the hospital.  BUT it was after that- the Holy spirit just reminded me He is Holding me.  Like a Father holds His Daughter- He has me. He won’t let go. That its ok to be mad. Its ok to cry. Its ok to be sad. Its ok to be confused. But to let it go and Let him work in the midst of this. Im just like uhhh… uhhhh. Say what???? Yeah that’s right—no matter what your going through- no matter where your at, I’ve made a commitment to you and I will never let you go. Kick scream fight pout, give me the puppy dog face. It won’t work, but I won’t let go. I’m fighting for you, I will see you through. Stop fighting me. Stop running from me. Nothing you could do, can do, will do, could have done , will ever make me love you less. The blood has paid the price.

                  Did I tell you I was sick and the medication has been really screwing with me and has made me a really crabby person cause it has? I’m overwhelmed, I think doctors or some of the most irritating people in humanity ( maybe that’s to strong.. sorry) Im tired of test, im tired of I.Vs, I’m tired of being sick and being put on medication that makes me only sicker. Im on the verge or losing my job and practically everything else.  And before this gets to depressing I’m going to leave it off at well—YOU GET MY POINT J  All that Reminds me of Elijah.  He is a Strong man. Great man. God used Him. Worked through Him and you know what – EVEN God’s Greatest Hit rock bottom before climbing to the top.  From 1 Kings 17-19 it Talks about the encounter of Elijah and Baal that I’m going to talk about. You should go read it J.

 Elijah was a prophet and was completely in tune with the Holy Spirit in my opinion. I mean this Guy heard from Him and listened and totally had the fear of the Lord. I mean God used this man to raise a widows son back from the dead—No doubt in my mind God was using Him for something extravagant.  Then some stuff happened that Baal didn’t agree with and Baal decided she would send some people out to go and kill Elijah. What did Elijah do? I personally—if I had Elijahs kind of calling on my life—I would say “Bring it Baal—you can’t touch this ( I really hope all of you reading this are thinking of the song now)” .. I mean seriously this man raised someone from the DEAD!!!!!!! By  the POWER OF GOD he did it!!!!! But instead Elijah- did the opposite. He got scared and ran- He ran to a place called Beersheeba just inside Judah and sat down by a tree and prayed that he would die.   1 Kings 19:4 “Take my life Lord; I am no better than my ancestors.”….. Yeah to bad God did’t fall for that.

                   You see – this story has nothing to do with healing. Although yes I’m praying for healing.  I’m praying for answers. I would even be ok if I just found a drug that actually just worked with no side effects.  This story is more about redemption. This story is more about saying – yeah… buddy. I did screw up , big time but you know what God is good and it’s a new day time to start over.  Before I got sick. I was a miserable crabby person who just naturally complained about how much I hated life to begin with. It just naturally came to me. One thing went wrong—everything went wrong. The Lord really worked on me with that and FAST. No more black and white thinking. AMEN! That’s why I love how the Story of Elijah Ends. And why I think God keeps just reminding me of it so much—you see—Elijah ran and hide and threw a self pity party because something kinda went wrong—but look at all that God has for Him and all that God has and is doing through Him—clearly A lot. And or maybe my mind is just translating that wrong. But to me this dude is pretty amazing. Then you read on through 19:5 -15….. God never gave up. V.S. 5- God used and Angel to tell Him to get up and eat.   V.S 7. God Used an Angel a 2^nd time to tell him to get up and eat a 2^nd time to get up and go eat, and before you know it Hes hiking for 40 days and nights. ---- Needless to Say the Lord never Gave up on Him. He met Him where He was at and told him what He needed to do in His darkest hour.  Same thing he does to us. Story of redemption. Elijah went on later to lead Elisha. Amazing story in itself.  But if God would of just said.. welp you wannba wallow in self pitty by the tree have at it I’m done—so be it—who would have known how the          biblical times would have turned out.

So ending thoughts. – Yes—I’m sick. I’ve got a lot going on. Its not a pity party.

God is Good and faithful. His Promises are SO true. Rely on His strength not your own.

He NEVER lets go.

He will meet you where your at, no matter where that is, whether its an addiction an illness frustration financial issues, just let him. Trust him and choose Joy in the midst of it all. Theres no point in being upset in something you can’t change. Elijah Eventually Learned that. – He ended up with a successor.

With love y’all

Tabitha.