Thursday, April 26, 2012
Wednesday, April 25, 2012
Monday, April 23, 2012
Sunday, April 22, 2012
Saturday, April 21, 2012
Tuesday, April 17, 2012
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.
Monday, April 16, 2012
Hope You all have a fantasting day. Not sure when I'll be able to write. untill next time...
Wednesday, April 11, 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 , which is early for me, because I usually don't wake up until or . 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.
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.
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 and woke up, thinking I had a 2 hour nap, but looked at my clock and it said . 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.
Sunday, April 8, 2012
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.
Friday, April 6, 2012
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.
Wednesday, April 4, 2012
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.