Suspiciously Dressed Female

   

      I know I haven't posted lately, it's been super crazy and their really hasn't been much to blog about story wise... until today...
     I'm walking again!! It's been 50 some odd days since my last seizure! WOO HOO!! Every day is another day closer to having this whole mess behind me. It will always be with me, but it will be on the back burner of my brain which I can deal with. I'm starting to get back to normal. Which is a funny word to think about because I haven't been "normal" for almost ten months. I'm able to have alone time again with out someone constantly with me 24/7. And a big this is I'm able to walk by myself again! I'm allowed to walk to work which is a big step for me since the last time I walked to work two guys found me twitching on the side walk. So in between my house and my work is a park and there's a four foot wall almost all the way around this park. So everyday when I walk to work I hop the wall, if I were to walk around the park and not hop the wall it would add an extra 1/4 mile to my walk and I'm going to admit I'm lazy. So anyway I've been hopping this fence since August, minus when I wasn't walking. About 1/2 a mile past this fence a cop car pulls up next to me. He rolls down his window, I take out my ear buds. He steps out of his car and asked me what I was doing. I said I was walking to work. He asked me where I was coming from. I answered home. He asked me if he could see some ID. I pulled out my ID and asked why he had stopped me. He said "We got a call from someone saying a suspiciously dressed female was hopping fences." Let's keep in mind that I'm wearing black work pants and a Star Wars shirt, if that's suspicious I'm concerned. I was like "soo you assume that's me right?" He nodded. I explained to him that the fence I hopped was the park fence... and public park. And that I was just being lazy and didn't want to walk all the way around. He asked me a few other standard questions. About five minutes later he handed me back my ID and started to get back in the car. "Soo about the fence, am I allowed to continue to hop it?" I asked because I would like to know for the next time this happens. "Yup. Have a good day at work." And then he drove away. I got the cops called! This has happened once before walking home from the bus stop but not because I was hopping the fence, because I was super low and looked like I was drunk.

Keep your head up and don't hop fences,
Ellie <3
   

72 Hour EEG (Day 3)

The bed head/matted down/sticky mummble of hair picture.
(This pic was taken at 3am soo I have no idea why it's green.)  

     

I know you all were waiting on pins and needles to find out what happened today. Well, it hasn't gone all to fantastic. I reached my breaking point late last night and I'm not guaranteeing all the wires will stay intact tonight... I might be pulling them out soon. It's not that this is painful or anything it's just not fun. It's itchy and

My new cover all the wires so they don't fall off look.

hot and the gauze fell off last night so it's a sticky handkerchief hair mess thing with wires. It's not attractive. I slept with exposed wires last night because the gauze fell off and I slept over at my Grandparent's house and I couldn't find anything to rewrap my head with so I slept without it covered. Terrible idea. They use a special glue to keep all the wires attached to my head and between the head glue and the gauze I've managed to work up the worst bed head/matted down/ sticky mummble of hair you have ever seen and it's not pleasant to have attached to me right now. So that was fun. Because I didn't get much sleep at all last night I've been really tired, cranky, and moppy all day which hasn't been fun for the people around me. My mom and I went and got our nails done which felt really good and they're really sparkly now. And then I just kinda sat around literally doing nothing. And let me be the first to tell you this, but sitting there doing nothing

My sparkly pink nails in honor of Valentines Day...
(it took 7 tries to get this picture.) -____- 

and giving yourself the opportunity to think about how not enjoyable this EEG is, is what pushes you over the ledge. I just broke down in tears. There was now consoling me, or calming me down I just needed to cry so I did. Something very therapeutic for me is cooking/baking so I made food, dinner to be exact. Than I baked 24 cupcakes and 16 chocolate chip cookies. And then I locked myself in my room to stare at the wall again because I obviously didn't learn my lesson the first time. I am so done with this EEG thing I can't even put it into words how annoyed I am. So I'm going to go to sleep now and hope that tomorrow morning takes a while to get here so I can just sleep and not think about nasty hair and the wires lost with in it.

Keep your head up and keep yourself busy,
Ellie <3

And for your enjoyment and to keep you smiling... A CAT PICTURE!! 

Your welcome.

72 Hour EEG (day 2)

My face looks awkward. But this is just after I woke up from my first night with this bad boy on. 

     My first night with the whole EEG thang on went fine I guess. I kept waking up and despite what they tell you this isn't the most comfortable thing to sleep in. I did it though. Like I said yesterday  it's best to plan as many things as you can to keep yourself occupied and keep your mind off of the the wires attached to your brain. So after breakfast we set off to play a few rounds of laser tag which let me be the first to tell you, it's extremely difficult to do so. I still came in first and it was a great distraction. I took about an hour to decompress and relax and then my head started itching so I started some pinterest projects that I had found. My first project was to bleach a quote unto a shirt with a bleach pen. That actually turned out really cute. I'll post a picture of it later. My second project is a candy dish with glitter on the inside. It's still drying and it's not quite turning out like the picture I saw so I might have to do some re-do work on that tomorrow. Now it's dinner time. I'm almost done with my first full day. Honestly, I've made it a lot longer than I though i would. I'm in high spirits still and although my head is hot and itches I'm doing alright. 

Keep your head up and your spirits high,

Ellie <3

72 Hour EEG (Day 1)

     I was opposed to this test from the very beginning. I had a 24 hour EEG done in August, the first time I was admitted to the hospital. An EEG is basically charts your brain waves and anything abnormal is considered "seizure activity". My neurologist said that the 24 hour EEG showed no signs of my episode being a seizure. So I don't understand why we're redoing this test, but for a longer period of time. It's also frustrating that I'm now 5 days episode free, so if I continue on this trend of no episodes this test will show NOTHING because they won't have anything to look at. Any who an EEG isn't painful it's just extremely uncomfortable. My head is now really heavy which is an unusual feeling that I'm not a fan of. Also because my head is wrapped up in so much gauze and glue with tape or something my head over heats really really fast. It's SUPER itchy too and I can't itch it because it's like the Great Wall Of Gauze all up on my head. Now although this thing is super ugly I'm still going out with this bad boy on. I will not let this hold me back. Laser tag?? I'm doing it. Movies?? Done. Hanging out on the Las Vegas Strip?? It's happening. I wear my Despicable Me knit hat over the ugly a$$ gauze and I pretend like it's not there. I highly recommend if you get a 72 hour EEG and it's safe for you to go out plan as much as you possibly can to entertain yourself. It helps take your mind of the wires that are connected to you. I just keep telling myself I can do this... maybe.

Keep your head up, because you can do this,
Ellie <3

Super ugly gauze wrap that makes your head itchy.

All my wires. They're like four feet. *Tip* If you do get an EEG place the whole thing in like a draw string back pack. That way all the wires and the pack that comes with it are contained. Trust me it helps. 

I put my minion beanie over it when I go out of the house. I find more people focus on how awesome my beanie is than the wires sticking out of my brain. 

Medical Alert Bracelet

*Before I begin this post I must say that these opinions are solely my own. I am not being paid to say anything in this post, I am just extremely happy with this product and I want everyone to feel just as comfortable as I am with wearing a medical bracelet.*

     I have been wearing a medical bracelet since the Summer of last year. I was starting to pass out a lot and a common problem I was seeing was the fact that it was hard to ID me and get a parent's phone number from me when I was just coming out of an episode. Some one had suggested wearing a bracelet before, but I thought they were all clunky and not practical and I didn't think anybody would look at it if I passed out. But I looked around for something I liked. I came across just a silicon band that I could put my name and my mom's number on and I ordered that. I figured I would only wear it while working out or when I wasn't with my parents. But it was ugly and I'm not a big fan of ugly so I stopped wearing it all together. Then one day while reading blogs from other people I stumbled upon a post about medical alert bracelets and how they were having the same problem as I. I kept reading to find out about Lauren's Hope. It's a company that combines safety with style. I glanced around their website and started finding bracelets that I fell in love with. And I loved that I could make them my own by mixing bands with my alert plate. I ordered my first bracelet in July. I wore it all day everyday, and two days after I got it in the mail, an EMT used it to locate my mother while I was unconscious. I like change. I'm always changing my ear rings, my style and now I'm constantly changing my bracelet. I've grown to a collection of six bands and I change them as often as I feel. I just received my newest one in the mail (it's glow in the dark!!) And I love it. So if you're in the market for a new medical alert bracelet/necklace or maybe you don't have one and you think you should try Lauren's Hope. I've been wearing a medical alert bracelet every day since I ordered my second one and trust me it's come in really really handy a few times already. And like they always say it's better to be safe than sorry. So what does your medical alert look like?

Keep your head up and stay safe,
Ellie <3

4 out of 6 of my bracelets 

The one I'm currently wearing is glow in the dark with a purple plate. 

Most of my bracelets live on my dinosaur by my bed until I decide to wear a new one. 

Work Life

 

  I love where I work. Work has become something I look forward to. It's my one opportunity to get out of the house. I love the people I work with, I love what I do there. I just love work. Yes, I've have had some episodes, but we taught them how to handle it and they've been cool with it so far. Today I felt an episode coming on so I asked my lead to stand in for me. He seemed frustrated about it. I felt bad because we were really really busy and now he had to stop what he was doing and stand in for me. I walked into the break room and a manager came in and sat with me until I went out and then she pulled me out of it. That's the nice thing. I can feel them coming and give everybody a heads up, and there are ways to pull me out of an episode. I was back to my spot in less than five minutes and everything was fine. I still felt really bad because they happen a lot and I know it's probably scary for them as well. Later I was standing at a new spot where I'm off by myself. There's guests and everything, but none of my coworkers pass by very often. We have a call button that we can push in case of emergencies that connects to the office. So although I hate pushing the call button for me, I had to because I didn't want to go down in front of our guests. So once again I was rushed into the break room, went out, brought back all with in a matter of minutes. I called my mom just to let her know what was going on and my mom was frazzled because she was far away. Because we live so close to work, if they feel it's necessary one of my parents sits in the parking lot so that they can come in if need be. I asked my manager if he wanted someone to come sit, because it was really busy. They all laughed and said "no we got this handled." Hearing that was awesome. It reassured me that I wasn't being a burden. That they weren't mad at me. I can't control when my episodes happen, I can't control that they happen. They understand that and are willing to work with me and help me out when ever needed. That's good to know. Just another reason why I love where I work.

Keep your head up and keep your head up,
Ellie <3

One Foggy Step At A Time

     You can't plan for everything. I can't tell you how much I wish that I could plan for everything because I would have made a few different desicissions yesterday. Like a different sweatshirt for example. If I would have known that my sweatshirt was going to be torn into two pieces I probably wouldn't have worn my work sweatshirt. To be quite honest I probably would have just called in.
     It started yesterday. I didn't have a ride to work so I walked. It's like a mile maybe a mile and a half walk. That's nothing, I can walk that in my sleep. I was walking fine I could see my work just across the street and then everything went black. Apparently while I was walking I collapsed and began convulsing. Two men happened to be driving down the street and watched it happen so they ran across the street and got the fire department. Because I was wearing the darn sweatshirt and unresponsive they cut the sleeves of my sweatshirt to start a line and get a set of vitals. I honestly don't remember any of this. I remember waking up and one of the firefighters started asking me the usual string of questions as well as where I worked. When I told him I didn't know where I was he said I was across the street from work. I asked him if I was going to be able to make it... he said I should probably just call in. That's the last thing I remember. But the day goes on. I was transported to the hospital because the seizures were still happening. While in the ambulance they gave me an aceditive to relax my muscles hoping to stop the seizures so now I'm just flat out loopy and seizy. It's not the most glamourus of combinations. The next thing I remember is being in the hospital and feeling like little ants were crawling all up my back and then when they made it to my neck they started to crawl down my legs. At first my mom thought I was just over reacting over a little itch. But then I started bawling and gasping for air. I was having an allergic reaction to some of the medication they gave me to help stop the seizures. They gave me more meds to counteract the reaction and help me breath. Next thing I knew it was four hours later and I was in a new hospital. The ER doctor came in and told me that I'm not having seizures. That none of the tests prove that its seizures and that it's all psychological. Now I understand that that's possible. But I've seen a psychiatrist and they've cleared me of conversion disorder. He kept saying that they could have killed me by giving me that medication that I didn't need and that it was my fault for not telling them they weren't actual seizures. I was told by my neurologist that they were atonic seizures which is indeed a form of seizures. So they're telling me that my neurologist was lying.. it was really really complicated and there was a lot of tears and doctors yelling at me and my mom and my mom fighting back. I really didn't have that kind of energy that late in the day and with so much stuff running through my veins. It was really quite an ordeal. The next thing I remember is getting admitted to my room really late at night and falling asleep soon after that. The next morning wasn't nearly as exciting. There was more confrontation with doctors and more medication but I was released by the end of the day. There are still so many holes in the story that I don't think I'll ever figure out.
     But I've come to the conclusion that you can't plan for everything. My mom couldn't have planned that she would have to get into a debate with an ER Dr.,  I never planned that I would get picked up off of a sidewalk and get drugged up to no end. You can't plan for everything. All you can do is learn from it and use that information to help you plan for other things. I never planned to be allergic to an anti-seizure medication and yet I learned that and now I'm planning ways to prevent me from ever coming in contact with it again. What are some of things you didn't plan for, but ended up learning something from?

More bracelets to add to the collection. I actually do remember taking this picture. Most of the drugs had worn off by this point. 

Keep your head up and take it one step at a time,
Ellie <3