Thursday, April 26, 2012

My Finger

Oh boy... Well I thought today would be a more positive day. I went to sewing. I had to seam rip out the whole piece because I sewed the top and not the bottom. Then my stupid machine kept beeping and I was getting frustrated. This girl in my class had to come help me and I just felt like I always have to have someone to help me. She fixed the problem and I went on sewing. I was sewing the pocket onto the bag. I moved the fabric over a tad bit and just burst into a scream and them a cry. The scream was from the needle going into my finger but the cry was from all my emotions just building up and this just made it all that much worse. Ya it hurt but it wasn't the worst pain I've felt in my life. The teacher freaked called the nurse and 911. Why do they always have to fuss over me. I'm so tried of all this. The nurse came. I'm sorry I have a hard time with her. She just kept saying "well at least it didn't go through your nail." I'm like lady you are not helping. The lady panics. She does not make a good nurse. Your suppose to be calm in the medical field. My mom says just 3 more weeks then I don't have to worry about her. The rest of the day was crappy. Had seizures you know the deal. Some kids were messing with me in one of my classes. It really hurts a person when you whisper and laugh when you don't even know what that person is going through. I don't know I feel like I. Going through a hard patch right now. It's hard for me to get my motions in order. I can't seem to pick up my strength and smile and say it's ok. I'm exhausted and through I am leaning on God, it's hard to see where this is taking me. I've been crying in every class. I have pain all through out my body. Pain nobody can ever imagine. Seizure that interrupt my thinking and school work during class. Then I loose the information during that time and do bad on the tests. It's hard for me to even find a smile. I probably rambling on about something nobodymwants to read. So I'll just go... Love always, Kari

Wednesday, April 25, 2012


These past couple of days I've felt so alone. I feel like I'm loosing my strength and becoming weak. Every little thing just sets me off till I'm in tears. Today has been really really bad. I called my mom to come pick me up because I just lost it and had to leave class. I've become so exhausted and I'm tired of keeping it together all the time. It's hard to put a smile on everyday and make people believe your doing ok. I've been doing that for years I'm over it. Do we always have to be strong?...

Monday, April 23, 2012

Life in Lyrics

Don’t know where to begin; it’s like my worlds caving in. And I try but I can’t control my fears. Where do I go from here? Don’t be mad if I cry, it just hurts so bad sometimes. It’s hard to tell if my eyes are open when all I see is dark. It’s easy my loose my step. There is no fight left on the inside. I’ve given up trying. I’m giving all to You. Maybe the reason for the pain is that we will pray for strength. And maybe the reason for the strength is so we would not loose hope. And maybe the reason for our hope is so that we could face the world. And the reason for the world… is to make us long for Home. No weeping no hurt or pains, no suffering You hold me now. No darkness, no sick or lame, no hiding You hold me now. Do you wonder why you have to feel the thing that hurt you. If there’s a God that loves you where is he now? Well maybe there are thing you can’t see and all those things are happening to bring a better ending someday somehow you’ll see. I try to be so tough, but I’m just not strong enough. I can’t do this alone God I need You to hold on to me. You are stronger, You are stronger. Sin is broken You have saved me. It is written Christ is risen. Jesus You are Lord of all. There will be a day with no more tears no more pain, no more fears. There will be a day when the burdens of this place will be no more we’ll see Jesus face to face, but until that day we’ll hold on to You always. It’s out of my hands. It was from the start. He is with you in the ICU when the doctors don’t know what to do and it scares you to the core, He is with you. Don’t give up. Hold on for one more day. I’m waiting on a miracle. I’m for Your Spirit to come. I heard the news today. It came out of nowhere. Wish I could run away but where would I go? Is this my destiny? Something so unfair. What will become of me? God only knows. They say the road to head might lead us through back through hell. I was sure by now, God you would have reached down and my tears away, stepped in and saved the day. I’ll praise you in this storm. You have never left my side. My strength is almost gone how can I carry on if I can’t find You? You must think I’m strong, to give me what I’m going through. But forgive if I’m wrong, but this looks like more than I can do, on my own. I know I’m not strong enough to be everything that I am supposed to be. I give up I’m not strong enough. Lord I am asking you to be strong enough. I’m so glad that your hear Lord. I’m restless till I rest in You, oh God

Sunday, April 22, 2012

Seizure Girl

No one has ever called me this but they minds well. Today has been a bad day and I'm having a hard time handling things right now. And might I say it's only 1:30pm. There is still more day to come. You think God would prevent me from having seizures in his house of worship, but maybe he has something else in mind. It's not like I'm giving up on him, I want to trust him and believe that he has a plan but I just can't see it. I can pretty much keep it together and be strong. Someone today told be I don't have to be strong everyday. That hit me. Today I guess is one of those days. I know I talk a lot about what has happened with details but today I just feel all I need to say is I had a bad morning. However something did happen that I with specify (in a second.) First, God has put this verse on my heart for a while, James 5:14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. I read it a few weeks ago, and just said how I don't like that verse. In my opinion it's ok for one person to pray over me but I don't like everybody crowding me. And I don't like when they say "well if it didn't work, than it's because you didn't believe." I found myself reading and having people telling me about this verse a lot in the past few days. I read my devotions and it had this verse as a reference to what I was reading. You know when you keep hearing a verse that usually means God really wants you to understand it and do it. I was still really unsure about it though. Today I was anointed with oil and prayed over. I think to live by the Bible and do what it says. Is Satan trying to tell me not to do this or that's the reason I really don't like it? I am really having a hard time understanding it and how do I say it, believing that. Yes I believe God can heal if you pray. But if you really don't believe could it not happen? And if it you think it's working right away, but it's not? I don't know. It's just I have a hard time with this. Something else that happened today. I can't hear anything while I am having a seizure. It is like I am in a dream that is black and dark and silent. And I can't move. I'm kinda like just standing there. Or I'll be in a familiar place just standing there. Like sometimes I'll be in my friend's basement. But today while I was in that darkness I heard the name Jesus being repeated over and over again. "Jesus Jesus Jesus Jesus." While I was in that darkness it was like I was reminded that Jesus was and is with me. I was talking to my friend, and telling her that if I never get healed I will praise Him no matter what. I will praise Him with this illness, and wait for Him to return.

Saturday, April 21, 2012

Life is beautiful, but it's complicated

I've been sitting here a long time trying to think of an opener to write. And nothing is coming to mind. Let's just say reality has hit me tonight and I'm laying on the floor crying and asking God to just hold me. the reality of the Lyme treatment that I will be starting around August. I hate talking about it. I hate when people say, "oh it's the best for you" "you'll feel so much better after it's over" "you'll be glad you did it after it's over." WELL YOU'RE NOT GOING THROUGH IT!!!! I'm not just scared I am terrified. I have never been so scared like I am for this. I've just been saying "oh ya I am doing to treatment." I guess it never sank in that I was actually doing it. Some people said, "well do you even have Lyme?" I have dad 3 Lyme tests done and they were all positive. My symptoms of Chronic Lyme Disease: I have a nerve condition know as Reflex Sympathtic Dystrophy (RSD) also know as Complex Regional Pain Syndrome (CRPS). I also have a stomach condition caused by the nerve not doing their job. In this case not moving the food through my stomach, which is called Gastroparesis. (GP) Because all these nerves are misfiring I have tics (motor) and seizures. Reflex Sypathetic Dystrophy: My RSD hasn't been to bad. Except I have been getting this horrible vein pain in spurts through out my body. When it reaches my head it is unbearable and so excruciating. I scream and cry. It's like knives and fire all on and in my head. I have had some toe and foot cramping but not as bad as were I need my physical therapist to come. Gastrparesis: My GP has been ok. I have good and bad days. I try and eat the right foods. Not greasy, spicy, salty, fatty food. However sometimes I splurge and that's when it gets bad. I have been using my J-tube for the time I have one appetite (because of the medication.) I have a lot of stomach pain. And my granulation tissue is pretty bad and is what give me the most pain. Tics: My tics have been interesting. I have seen a pattern sometimes in them. For example I had some tics and then a few later I had a seizure. I think it may be another aura type thing to give me a heads up when one is coming on. I have 3 tics now. The first one is a shoulder shrug thing. My shoulder and stomach muscle tense up. The other one is a head thing. It kinda just looks like I'm cracking my neck or stretching it. Which is easy to hide. The other one is painful. It is when my neck tenses to the side and my hand scrunch. Seizures: My seizures have been frequent but shorter. I have started Trileptal which I don't know if it has helped yet, but possibly is making them shorter. I am still taking the full dose of Lamictal. Although it hasn't helped my seizures it has helped my swallowing significantly. I still can feel when I seizure is coming on. I get extremely embaressed which I probably have already said. Decisions: I have so many decisions on my mind. From the littlest things to big things. I really don't want to go to prom. My friends are pushing me to go. They want me to go. I'm not that kind of person. And last year I jus sat there and like that was fine with me but why can't I get dressed up and sit at home. I don't like to dance. I like to get all dressed up but not really dance. People keep saying "it's your senior prom, you'll regret it if you don't go" to be honest I'll regret a lot of things and I doubt this will be a big deal. The other is graduation. I feel like I am being rushed into something I am not ready for. Not speaking of graduation itself but the certain people. College: I have decided I do not want to go to paramedic school. I really thought I wanted to do something in the medical field but I am not sure if that is what God is calling me to do. I know he wants me to do missionary work. But I am not sure how much schooling I will be able to handle during treatment and what not so I will have to decide during that time. I was thinking doing foriegn languages and then doing missions. So that's pretty much all that's going on. Love Always, Kari

Tuesday, April 17, 2012

Where did that pencil go?

I'm sitting on the couch writing stuff down right? ok well I put my pencil down for like 2 seconds. I get frustrated and start yelling cause I just had the dumb pencil. I sit there and just say "oh well." I scratched my head and there was my pencil, in my hair. I'm a ding dong.
Today was ok. I was actually thinking that my seizures were going away since I only had one when I was sleeping. But, I was in my cooking class, we were just watching a boring movie and I was writing for this test, and I remember waking up with my head on my desk. I look down at my paper and the letters are all scribbly. I rubbed my head and said, "oh well hopefully no one saw that." My friend leaned over and said are you ok, I said ya I think I should go to the clinic. We were walking out the door and into the hall way, and Splat! It goes blank. I look up and see the nurse, my friend, and two other girls. The two girls were holding my head, my friend was holding my hand, and the nurse was freaking out. I got up and I was fine. Of coarse the nurse was freaking out and was like your not going back to class, I'm like I am fine gosh let me go. She's like we need to call your mom blah blah blah... They talked to my mom and my mom's like gosh send her to class she's fine. I'm like dude freak out. Uh it's so annoying. Like that nurse needs to understand that she need to calm down. The more flustered she is the less calm I'll be. Oh dear I guess I better pray for her. I've been struggling with Love your neighbor as yourself. I'm like God that is so hard. I got mad at some people in my kitchen in my cooking class and I started washing the dishes just like: God they are so annoying right now, please just not let me to do anything to them. Control my tongue. Well been thinking alot about the whole career thing. Yes, I have a whole year to think about it since I am doing treatment and everything. (treatment is 15 months and I probally wouldn't start till September.) So I have some time. I'm a person that changes my mind often. First I wanted to be a sign language teacher, physical therapist, nurse, paramedic. God has called me to the mission about ahh a year and a half ago. So you gotta do what God says. Which I love anyway. And I think I want to go into foriegn language. I don't know I guess I'll pray about it. Oh dear my mom keeps calling me to come take my pills. I have taken these 2 in like 3 days. Which isn't bad or anything there just supplement. One is orange and smells horrible and the other is green. And seriously it is spinach in a pill. Uh both YUCKY!!!! I get to smash it up and stick it through my g tube. It feels like a science project when I do that. LOL. Not much else. Had 4 seizures since I got home. The last one was bad cause when I woke up I had the worst pain in my fore arms and my feet were scruncthed and cramped. Stretching and ice helped with it though. Ok I'm hot. This computer has been sitting on my lap all night. Ha I have to go do math devoir anyway.

Love Always,

Monday, April 16, 2012

I Hate computers!!

Sorry it's been so long since I updated. My computer is not working and my mom's computer isn't working, so I'm frustrated. Well not much happeneing. Blah seizures and new medications as usual. Weird thing we kinda found a patturn of when the seizures happen. First of all I have most of them while I am sleeping. I wake up constantly during the night. (had 7 last night) For some reason during my sleep when I wake up I know I've had one. And the other thing is when I am tired I'll have one. So they mostly happen in the morning or in the evening and at night. However I did have one at school last week. Well 2 if you count that one before school. Anyway, They don't often happen at school, or they haven't yet. Oh dear God I hope they don't. I get really emabarressed when I have one. Or I feel bad. I hate when people stare at me. Or gossip about it. Oh and I hate special treatment. Not to like nag on my mom or anything, but I have been completely frustrated, if my seizures last longer than 25 minutes you can call my mom. But please don't call her everytime I have one. Gosh, my mom will be tired of picking up the phone. Anyway, I don't want my mom to feel hurt by this post, (cause I am sure she'll read it. I love you mom!) I just wanted to tell her how I felt. For along time I would just keep things to myself and not speak up for myself. But I guess the therapy is helping with that. Oh like what happened with my grandparents. My mom was very proud of me and I was proud of myself for speaking my opinion. I went to relay this week. I stayed maybe 5 hours. My teacher bought one of my fork braceletts. Awe she is so cute. The forks went super fast. I think I just might make more for my friends since they liked them so much. I am so sore today. I mean I played volleyball last night but seriously I stood there and maybe hit the ball 2 times. Actually I did serve a few times. Oh me and my friend made a signal for when I feel like I'm going to have a seizure. LOL. It's funny. So we had electives last night at youth group. That's just like you go to a cetain group and learn different things. Like one was baking and one was hair and makeup and my group was volleyball. haha. We learned about getting a fondation in our walk with the Lord, just like we need a fondation is volleyball. It was funny. So anyway I was sitting on the bench crying. I had an aura and didn't what I was going to do. Like I didn't want to be rude and just leave. So I just sat there. My friend was like are you ok, I'm like I feel bad. We walked inside and then back outside and then I was gone. I don't know if she caught me or not. Oh well. Some of the conselous came over and the seizure lasted 2 minutes they said, and then I got up and went to play volleyball. It's so weid like after them I am totally fine. It's like I had a crazy nap. I don't know. But anyway the conselours I guess have to know what to do in case it happens. I don't like it to be a big deal. I don't like paramedics. However I do want to be a paramedic. No 911 unless I hit my head. Just let me lay there for a while and I'll be fine. Oh yah so Easter Sunday (I don't know if I said this in the previous blog) I had one and fell on this kid, haha how embaressing. Ya and then all the people were praying for me when I woke up. I hate when people do that. I know it says in the Bible that we should anoint with oil and have the elders pray over the sick. But honestly that just makes me uncomfortable. I had it done to me one time when I was a kid and hated it. Sorry just something I don't believe, I'm not mad or anything. My tics are still happening. When I talk to my doctor I will ask her about that. I got to the full dose on my meds on ;ast Tuesday, so it might be from that. Oh also, the meds make me have NO appetite, or I'll have huge cravings for things. Like when I wass at relay I craved a hotdog. Haha. And during the day I wouldn't eat anything, so I have to do a feed and thats fine cause it's not like I'm eating so it doesn't discust me.
Hope You all have a fantasting day. Not sure when I'll be able to write. untill next time...

Love Always,

Wednesday, April 11, 2012

I have Hope

April 10, 2012

Today has been bad and boring. It's been so frustrating and complicated. OK let’s start with the beginning. I woke up this morning around 7:45, which is early for me, because I usually don't wake up until 8:30 or 9:00. I remember waking up several times in the night, I think I was seizing. Then I got ready for school. I got to school and I went up to my sewing class. The teacher asked me how I was doing and I said ehh... not feeling that great. (I told all my teachers about my seizures so they had some what of a clue.) Anyway I was working on a pillow case. The teacher said she had to go talk to another teacher, so I decided to go hang in the clinic. The clinic ladies were trying to go over my medical history. We ended up talking a lot about Lyme and stuff. After about 15 minutes they kicked me out, (even though I didn't have a first period.) I then decided to go to my math teacher’s class to talk to him about getting extra credit. I went up and got to his class and I was having an aura, but I said, it'll pass. My heart was racing and I was having a hard time focusing. During this time he was talking to me about the extra credit that had to do with taxes, but I don't remember. (The stuff I'm telling you is what I remember.) Then I was starring at him and he's like do you need to sit down and I'm like no. And then he kept talking and I was zoned out, and then next thing I know is, I'm saying "I'm going to pass out" and then it was just blank. (During these episodes, it's like I have an out-of-body experience or if I am dreaming.) Anyway, I remember when I woke up that there were a much of paramedics around. I was just think "great." They said they were going to transport me and I started getting mad, they talked to my mom and said not to transport me. I was so scared they were going to take me to the hospital. The next thing I remember was they were putting me in my mom's car. We drove home and I laid on the couch and took a long nap. My mom later told me what the paramedics told her. So apparently I passed out in my math teacher’s classroom and he knew about my seizures, but he didn't know they were like this. So then they called 911 and the paramedics came and did their thing. They said I was in and out. They said they lasted like 25 minutes. My mom said at one point there was a point were it was super violent. They took me on the stretcher and brought me to my mom's car and they followed us home to make sure I could get in the house OK. I was fine the rest of the day, just really bored. I have "tics" which is just like my body will jump or my head will go to the side. Well anyway, for the next three weeks my mom said she is going to stay at the house till I come home from school, so that if I have one at school she will be closer and easier to come and get me. I also found out today that I only need one more credit to graduate. So if my seizures get worse then I only have to take one class. 

Also me and my mom have been doing some researching on these non epileptic-seizures. (However when I was ten I did have epileptic seizures.) They call them that because they don't know what they are caused by (which in my opinion is generally the Lyme.) Well we think it might have to do with the vagus nerve. Vagal nerve fainting (also known as vasovagal syncope) is quite simply any loss of consciousness caused by the vagus nerve. The vagus nerve runs directly from the brain stem, in front of the ears and down the neck towards the chest and abdomen. It branches off in several places to provide communication with the brain to a number of organs, such as the heart and the stomach. Its main function is to direct blood towards the digestive system when food is eaten, but if it is overactive then the vagus nerve can take too much blood away from the brain, causing a loss of consciousness (vagal nerve fainting).

 Or it could also be Convulsive syncope. Not all convulsive episodes are due to epilepsy and a number of these have a cardiovascular cause. Failure to identify these patients’ delays the provision of adequate therapy while at the same time exposes the individual to the risk of injury. Syncope is often accompanied by tonic or myoclonic muscle activity. Myoclonus is usually brief. The term “convulsive syncope” specifies a common variant of syncope that is accompanied by tonic or myoclonic activity. Syncope myoclonus may manifest itself as anything from a single twitch of the mouth to a storm of violent jerks affecting the entire body. Tonic muscle activity during syncope typically consists of head and body extension with either flexion or extension of the arms and sometimes clenching of the fists. Syncope may also produce complex movement including, head turns, head raising, or sitting up while being unresponsive. Vocalization is in the form of moaning or growling are common. In some subjects, visual hallucinations were restricted to a perception of gray haze, colored patches, or glaring lights.

I do not believe these are due to physiatric problems. Yes, sometimes I’ll have an episode due to nervousness, and I’ll stay in one because of stress. But I do not feel like this is physiatric. I may have one of these two conditions or both but I am most positive it is from the Lyme. And once the Lyme is taken care of then these episodes will go away.

Well I decide to go to school tomorrow. Cross my fingers nothing happen. I just get a lot of "tics" tonight. Hopefully just that and no seizures. I like school and want to go and be with my friends. Pray for me.

April 11, 2012

Sorry there are two updates on this one, but I had a hard time with my internet last night. Today was not so great either. I went to school, but as I was in my math class, at the end of the day, I got an aura (extreme fatigue.) I came home and slept. I went to sleep at 2:15 and woke up, thinking I had a 2 hour nap, but looked at my clock and it said 2:44. I’m like oh my. I haven’t been sleeping well. I think I have seizures during my sleep because I wake up often during my sleep confused. Today I also think I fell. I woke up with my head under the piano in a pool of vomit. I don’t even remember. I told my mom. I sometimes wonder about my safety, how I could’ve choked. I know my mom is super protective about it, and is trying to give me some freedom about it. It is not as much as I like but what can I do. Tell her not to worry? That’s what parents do. I am still having tics. I am not sure what’s causing them, probably my screwed up brain.

Let’s look back:

When I was a baby maybe 1 or 2 years old I had a high fever. Like 104. Then when I was 9 or 10 years old I started having absence seizures. They tried a bunch of different medication but few worked or made me like a zombie. They tried a drug called Lamictal. It helped and I was on it for a year. I slowly got off of it and the seizures stopped. I was 14 years old when I was bite by a spider? (which we later discovered it was a tick.) When I was 15 years old I started having nerve pain (still do) and was diagnosed with RSD (a nerve condition.) When I was 17 years old I was diagnosed with Gastroparesis which is a condition that has to do with the nerves in your stomach to contract making food pass through your system. The end of 2011, I started having non-epileptic seizures. Tests were done but now one could find out what it was. Doctors told me I was crazy and said I was making it up. I then went to see a Lyme doctor. She did 3 Lyme testing and I had 3 positive tests. I was diagnosed with Lyme in 2011. I developed not being able to swallow in the next few weeks. I have talked to my doctor 4 weeks ago. She put me on Lamictal, again, which has helped my swallowing. She knows that my seizures are due to Lyme, because many of her other patients have the same symptoms. She said that if the mediation doesn’t start working then she will put me on something else. I am then going to start the Lyme treatment once I get the inflammation all out of my body. She said it could be 2-3 months. She out me on another multivitamin, (which smells terrible.) and is giving me Melatonin for me to sleep.

Hope that wasn’t a lot to process. Hope that’s the key word tonight. I have been telling a lot of people to pray for me, saying that I don’t think this will ever end. I have been reading my Bible and been praying and asking God why am I going through all this, since I’ve been going through a lot of other things as well. I can’t understand it. He has showed me this week that He will keep me safe, and never forsake me even through this trial. He has given me so much peace about the whole ordeal. I am also appreciate of all the people who have been praying, people who have helped me through my seizures, (including those who have caught me!) Thank you, Thank you, Thank you!

Hope is like a little light, even the tiniest bit guides us through the darkness.

Love always,


Sunday, April 8, 2012

Understanding my seizures

Just review on the different kinds of seizures:

X indicated symptoms I have.

Generalized seizures

Grand mal/tonic clonic:
-unconscious, convulsions X
-tongue biting  X
 -urinary incontinence

-stiffen and loose consciousness X
-last 30-60seconds after which the patient goes into a deep sleep (the "postictal" or after-seizure phase). X
-repetitive jerking movements X
-last 30-60 seconds

Absence seizures:
-disconnects from the world for a few seconds X
-brief loss of consciousness X
-last just a few seconds
-Blank stare

Myoclonic seizures:
-jerking but just for a second or two.
-brief electrical shocks X

-loss of muscle tone
-falling X

Partial seizures (sometimes have an aura)

Simple partial:
-Spasms X
-Awareness preserved
-memory preserved
-consciousness preserved
-stiffness X
-rapid heart beats X
 -urinary incontinence

Complex Partial Seizures:
-awareness impaired X
-consciousness impaired X
-repetitive involuntary movements X

Pseudo seizures:
-clonic X
-tonic X
-absence X
-myoclonic X
-patients can not control X
-look like seizures but have no electrical confusion of the brain X
-can be cause by nerve damage (for me Reflex Sympathetic Dystrophy) X

My auras:
-Wave of fatigue
- Rapid heart beat
- Nervousness

My seizures are called pseudo seizures. My brain misfires because of my nerve disease Reflex Sympathetic Dystrophy and Lyme disease. The types vary but include: Tonic, Clonic, Absence, Atonic, and simple partial. 

Why am I telling you this? I was told I had 8 seizures while I was at church this morning. I guess they were really bad. I fell and loss consciousness.  I was jerking and my eyes were rolling. I guess that would be very scary for people.

I want to make something very clear. I DO NOT need you to call 911, or transport me to the hospital. If you do I will not go. Today I know a bunch of people that surrounded me, wanted to call 911, I came out of it and said NO!

My mom came an picked me up and I just cried in the car. It's so frustrating. I am up to 75mg on Lamictal. I continue that this week and by next week I'll get to the full dose of 100mg. I'm praying it starts to decrease. Also me and my mom talked about getting an alert bracelet. The paramedic that went to the church saw my little charm bracelet that said seizures on it. But it is so tiny it's hard to notice. 
I might go out tonight, but I need to take a nap, sometimes I get really tired after my episodes, so it be a good idea. 

Love always, 

Friday, April 6, 2012

I know You are for me

I know that You are for me, I know that You are for me, I know that You will never forsake me in my weakness'. I know that You have come now even if to write upon my heart, to remind me of who You are.
This week has been full of seizures and uncertainty when and where I'll be. That frightens me. I had 4 seizures this evening between 9 and 10pm. I also had one early this morning. I woke up laying on the kitchen floor right near the re fridge. I'm like wow OK? I don't even remember what I was doing. Maybe getting a drink? I don't know. My mom thought it was a good idea if I could track them. So I got an app for that. It says how long they last and stuff. Let's see I had one at 9:02pm and it lasted 52 seconds. Then next one was at 9:09pm and it lasted 36 seconds. The next was at 9:14pm and it lasted 5 minutes and 7 seconds. And the last one was at 9:26pm and it lasted 3 minutes and 5 seconds. I get an aura each time so I know when it's about to happen. It happened during class in the food science class while we were in our groups and I'm like guys I'm going to have a seizure. They were like do you need to go to the clinic or anything. I'm like no just give me a minute, and then I came out of it and went back to cooking. Sometimes it takes me a while to come back to the world after I wake up and other times I'm like crap I had a seizure. And then I just get paranoid about if I looked stupid or if people are talking about me.
Feeds arn't going so well. I have done maybe 3 this week. Ya, I am doing one now though, especially since I can't keep anything down.
I had a fun time with my friends last night. It was suppose to be 7 of us but only 3 could come. We had fun though. Oh and it was at my house. Watch this video:

Tomorrow I am going dress shopping for prom. And then sunrise service at my moms church and then going to my church for 9am service. I am so bummed that we don't have Sunday school or Youth Group. Like come on what am I gonna do on Sunday night. We need to have a movie night or something fun?! 
 Oh one thing I forgot to say. Well on Thursday I had to go to the oral surgeon because I have to get my wisdom teeth removed. Well he does all his extractions in the office. I went to him before braces when I got 8 teeth pulled and one exposure done and everything was good. Except during the exposure they didn't put me to sleep and I could smell my own flesh burning. Anyway, so they were going over the sleepy meds. He said he uses fentyl and versed. I'm like no no no allergic and can't do that. (He is an anesthesiologist too BTW) He said or we can do profafol. I'm like no I can't do that either. He's like we can do nitric oxide, but he said it still would be painful. He said since I have a bad reaction to both those meds then I have to go to a surgery center or the hospital because they would have to intabate me to make sure I don't stop breathing like I did last time. I talked about this with my Lyme doctor and she wants me to have it done because she said she wants me to have all the inflammation out of my body before I do treatment. So we decided I would come back in a month to see if the seizure med I am taking now will help the seizures and then I'll go back and try and get it all scheduled or talk about our options again.

Love Always,

Wednesday, April 4, 2012

This disease must does wonders for my apperance...everyone keeps telling me how good I look!

   Ha ha do you like the title? I am running out of title ideas. I had a good night tonight. I went to see my church Play. It was a musical and it was so good. 
   I had a little bit of trouble today. I passed out during math class. But it wasn't too obvious, my head was on my desk when I woke up, I hope the teacher didn't think I was sleeping. That's rude. LOL. I ended up passing out again after my shower tonight. I woke up laying half on half off my bed. Idk it's so weird it's like I get a wave of fatigue and then I can just feel it and then I'm out. 
   People at church tonight said I looked good. You know sometimes I feel really good when I'm around those people. You think I would be mad or confused about all that is happening but the Lord has given me so much peace in the last few weeks. 
   I am excited for this weekend. Tomorrow us gals are going to see my friends lacross game and then all go to Bible study and then hang out and have a sleepover at one of the girls' house. There is 7 of us I think. And I might go prom dress shopping Friday with the twins. (Yes, I have decided to go to prom, I wish a certain guy would ask me, but if not then I'll go with a group of guys and girls.) And my Best Friend is coming down this weekend so we might go dress shopping too. And Sunday is Easter. I am going to sunrise service at my old church and then 9am service at my new church. Should be fun. 
   Doing my feed tonight. Really don't want to. Rrrgh! I hate it and it hates my gut. Blah. I also have to start making a shawl tonight for sewing. Well it's not sewing, I'm kniting it. Ugh. well better go get started before it gets too late. Night.

Love always,

Tuesday, April 3, 2012

Hope is like a light

I'm running out of colors to use. Well I got a place to put all my medications and stuff.
It is so neat. Ha that had a double meaning. Today was an ok day. I had a few tics at school but nothing real bad. Not like I was on the ground passed out or anything, thank goodeness. I am hoping that doesn't happen. However this evening by mom knocked on my door and I woke up confused. I was laying on my bed passed out. Not sure how long I was out, maybe 15 minutes. I got to increase the rate on the seizure med which makes me happy. I started taking Claratin which has helped the rashes that I get from the Lamictal.  
I made a pillowcase today in sewing. We had to get a project that would last up till the end of the school year, and well, I finished today. But I calculated that I could make 15 pillow cases till the end of the school year. And maybe I'll sell them at relay. Good idea right? 
Well up early tomorrow for blood work and then school. Then I have to go to a dentist apt to see when I can get my wisdom teath out. Then I have French and then I'm going to the church play.
See Yah!

Love Always,

Sunday, April 1, 2012

Palm Sunday

I had a pretty good weekend. I went to a little movie get together with some church friends and had a good time. My seizures have increased. I sometimes know when they come on. I get like a flutter in my heart and that is the cue I need to sit down. I don't think they are stress related like some of then were before. Because one thing I am not stressed. My life is really good right now. I am surrounded by friends that love me and will support me and I have never felt closer to God. He is my pure strength. When I can't go anymore He will go for me. That is just so amazing! I feel so close to him. Like I never felt that by just reading my Bible and praying daily could make me feel so alive and living for God, it is so uhhh idk. Like I no longer need my earthly things. Because I have the Lord Jesus Christ in me. It's truly amazing. Anyway back to the seizures. I had 3 yesterday. One when I was cleaning my room and I woke up on the floor and I said to myself, I must have passout or had a seizure. LOL. Then 2 more at the party. Which idk how the heck.... It's so embaressing when you pass out and seize with your friends around. Not like they really minded I don't think. I told them in advanced and they were chill about it. Which I am grateful. Thing is I just hope I don't have any at school. That would be so embarressing with all the kids starring, not like I'd be able to see them hence I'd be seizing but the fact that when I wake up they'd wonder. I don't know, just thinking. 
I tlked to Dr. Fox and agreed to start Lamictal. She said it would help my swallowing, which it has!! She said she wasn't sure if it was going to help my seizures but cross your fingers it will. I can't drive or nothing. It's like my freedoms gone. But I have peace about it. I am trying to be so brave about the Lyme treatment. Dr. Fox said I will start in 2 months. The treatment is a 3 week on 1 week off cycle. The whole treatment is 15 months. whew... So prayers prayers prayers! 
Anyway not much else. Back to school this week. 48 days (including weekends) till I graduate. 
Love Always,