Tuesday, October 2, 2018

Hospital Stay

A few weeks ago I wrote a post. Unfortunately, it got deleted after restarting my computer.

It's been approximately three months since my last blog post, and for that I apologize. Quite a bit has happened in that time that I'll share. The first being that I was put on a new medication, Acetazolamide. Initially it helped and that got me excited. My new neurologist told me that if my seizures increased, that I could add a bit more to my dosage, so that is what I did. Honestly, I'm not sure what the medication is doing now. I'm not having seizures everyday, so that is a positive thing. Something else is I moved into a new apartment with my best friend. Our other lease ended, so we moved. Our last place wasn't somewhere we wanted to stay, anyway.

Two or three years ago, there was an incident where I was over at my friends house for the night. I woke up the next morning with extremely bad double vision, but that wasn't a huge surprise for me. It happened sometimes. However, after throwing up a lot, I called my dad, telling him I would sleep it off for a couple hours and that he could get me from my friends house then. What I didn't know was that my dad couldn't understand a word I was saying. My speech was slurred, and he continued to press me asking if I was on drugs or drinking. He came over and took me to the hospital, but practically had to carry me to the car; I couldn't walk. I had tests done at the ER and they concluded I was extremely dehydrated and gave me three pints of fluids. That was it.

September 15th 2018. The night before, I had dyed my hair and everything was fine. Little did I know that things could change in the blink of an eye. The morning of the 15th, I woke up around 8 AM to take my medications. I was fine. Two hours later, I woke up seeing double, and it was extreme. I wanted to sleep it off, but I had to use the bathroom. My best friend who is also my roommate, asked me how I was and I said I was seeing double. She said sorry and that it wasn't good. When I got up to go use the bathroom, I fell off my bed and crashed into her dresser which is about six feet away. She got off her bed and said something along the lines of, "Woah Sara! What are you doing?" My other roommate heard the crash from her room and yelled asking if things were okay. I said yeah. I still had to use the bathroom but gave up on walking, so crawling was the solution. When I got to the toilet, I barely landed okay. After, I wanted to wash my hands which required standing up. I barely succeeded. Thinking I would be better on my bed, I kept telling my roommate what I wanted. She didn't seem to understand what was going on, though she had seen my double vision before. That frustrated me, but now that I think about it, I probably had slurred speech, like before. After getting in bed again, I tried to sleep it off. That wasn't going to happen, though. Immediately I gestured for the trash can, and well, it wasn't pretty. Every time I tried to lay back down on my pillow, I sat up again. Eventually, I knew this whole thing was familiar. I had my friend call my mom for me on my phone, and though my eyes were closed, I heard my mom's voice when she came in. Unfortunately, I live on the top floor with no elevator. Despite my objections, I was helped down the stairs, and into the car. At first, my mom was going to take me to Insta Care, but she told me later that I practically yelled, "NO! ER!" That is what we did. I was helped into a wheelchair out of the car by some nurses, and eventually was placed in a bed, where all sorts of tests were done on me. I couldn't keep my eyes open because of the extreme double vision, and I continued to throw up. I wasn't able to perform even the simplest of tests that the doctors tried getting me to do, such as hitting my hands back and forth. I would simply stare at my hands. Though everything happening was hazy to me, I remember an MRI being ordered. They were discussing how I had a VNS and that it needed to be turned off so I could get it done. Though I was terrified because I had never had it turned off before, a neurologist came in and shut it off for the procedure. It was turned back on after. Later, I heard the doctors and my mom talking about strokes and tumors. Again, everything was fuzzy, but my stomach was in knots, and I asked them if I had tumors or had had a stroke. Or if I was going to have a stroke. They told me no, because the MRI didn't show anything. I only had stroke-like symptoms. To my relief, I was admitted to the hospital for a day and had so many tests done that I had never had done before. That is saying something! I'm a lab rat. Do you want to know what came out of all of it? Nothing. Absolutely nothing. There were no answers. All of the tests came back normal. The closest thing to an answer was from a lady from neurology who said she thinks it could be "complex migraines", but it was more of a side-comment. She recommended talking to my neurologist about it.

I was at my parents house recovering for days. I wasn't in the hospital for my birthday, but I was sure weak as all out. It was quite an early birthday present by going to the hospital! Yay! Last Friday, though I wasn't scheduled for an appointment with my neurologist until late October due to no availability, this was important to her, and she squeezed me in. We talked about a lot, one of them being complex migraines. She told me they mimic strokes and that she is positive that is what happened to me. Although I am happy to know what happened, it depresses me as well.

This is a long post, I know, but I have to say this one last thing, perhaps to vent: Having seizures is hard enough. It's beyond hard. But when someone looks at you like you're a bomb about to explode, after having a seizure in front of them and after explaining it, let's just say it damages your soul. You guys know I'm normally strong about all of this, and that I tend to let weird looks from people go by, but when you're trying to form a good friendship with a person and they do that to you? You lose all trust.

Friday, June 22, 2018

What Does It Look Like?

For this post I would like to show you what my typical seizure looks like. I’ve never liked watching seizures; who does? However, I think this will be intriguing because there’s only so much I can describe.

This video I shared from my YouTube channel. It’s from my days in Kentucky back in 2017. As you will see, I have quite a few seizures throughout the video.

I’m in Colorado right now, visiting family. We arrived today and my brain hurts. For the past couple days, I’ve been having a few seizures, and I’m debating whether to continue taking my newer medication. I’ll tell you, it’s extremely frustrating.

I really need to write more, but I am exhausted.

Sunday, April 22, 2018

Getting Through It

Where have I been? No where, really. I went to Ohio a couple months ago, but other than that, I've stayed put. I have been meaning to write a post, but I guess I haven't known what to say. I'll start writing and see where it takes me.

This past month or so has been hard. My seizures haven't been getting better, in fact, I think they are getting worse; more frequent. This has made it so I can't work without having seizures the whole time. Sometimes I have to stay home because they just won't stop. In the past, at my old job, they were not as frequent, so it was fine and I got over it. Yes, it was beyond embarrassing, but these days they occur so close together that it seems they are completely taking over my life. And what was worse? My neurologist did not help at all. "Let's go up on this medication", was all she said. She wasn't even my neurologist. She was her assistant. Twice in the four years of "seeing" her, I saw her. Enough was enough.

Of course there are other neurologists out there , and I needed a new one. My mom made an appointment with one in SLC, and we got in fast. Let me tell you, this appointment was a special one. It was strange to be talking with someone who actually seemed to care about my situation, and truly wanted to help. My parents wanted to come along and we all talked for a long time, me telling my new neurologist my story, and answering the questions she had for me. It was convenient because the hospital already had some of my records from my short stay there at the age of 16. My other records were transferred over from my most recent neurologist. At the appointment, my new doctor increased some settings on my VNS (Vagal Nerve Stimulator) because I felt like it wasn't working anymore. Instead of it going off every three minutes for 30 seconds, it now goes off every 1.8 minutes.

I am unemployed. I no longer have a job. Why? You guessed it. Seizures. Now that they have increased, I am unable to work. I cannot stand or help people without having seizures. It's been tough, not having an income anymore, but I am lucky to have such amazing parents who support me when I need it.

Yesterday I was having some seizures at my sister's house. I knew I needed to swipe my magnet, but I was nervous because I wasn't sure if I would be able to feel it. I had stopped feeling it months ago. However, I decided to swipe it, and lo and behold, it worked. I went into a coughing fit for a minute and it was fantastic! I took one of my "seizure stopper" pills (Lorazepam), and they stopped. That was a little victory right there. I have learned to take any time without a seizure as a happy time. That is a good thing!

Pity. It is something I extremely dislike. When I have a seizure and someone gives me the, "Oh sweetie, I am so sorry!" look, or even when someone verbalizes it. That is something that bothers me because yes, I have epilepsy. I have seizures, but there is nothing I can do about it. I don't need someone feeling sorry for me. In fact, it brings out the insecurity that is already there from having to go through all this. I have to live with it everyday.

I have mentioned her before, but my best friend is amazing. She doesn't care that I have epilepsy. "Oh, Sara's having a seizure. It doesn't matter." That is what she thinks. Obviously she cares that I have seizures. It isn't something she is happy about, but she accepts me for who I am. She respects my wishes and doesn't stare at me while I am having a seizure. She keeps doing what she is doing. For example, last night we were getting into her car to go for a drive, and while I was talking, I stopped and had a seizure. She saw, and she just got into the car and waited. When I finished, I hopped in and we just laughed. It wasn't a big deal! I love that she makes me feel like I am not a freak and that I am a normal person who has her own trials to deal with.

As I go through this journey with epilepsy, I learn new things everyday, including things about myself. I have learned how strong I can really be.

Monday, February 19, 2018

Plan B

    Written: February 6th

Hello again! How is life? Mine is okay. I have a lot to talk about. The first being, what 
happened after starting birth control.

Everything started out okay. However, after about a week into taking the pill, I had seizures. It's something I am used to, obviously, but they were frequent and more extreme. I decided to give it a while, and see if things would improve. After three weeks, nothing got better. The seizures stayed the same. That was the end of that.

Plan B was Progesterone. A natural hormone in a woman that helps prepare them for pregnancy. Progesterone can be made into a pill that many people take to regulate their hormones. A lot of people with epilepsy have tried it as well, and the Progesterone has often reduced their seizures. Even before my doctors appointment, my mom thought it was a better idea to try the Progesterone instead of birth control. See, Estrogen is another hormone in a woman's body that contributes to the development of her body. Anyway, I am glad that I tried the birth control so I could check that one off the list. Soon after I got off the pill, I started Progesterone. Now, I was hopeful that it would help control my seizures and possibly reduce them. Soon after starting it, I noticed a different in the severity of the seizures. Instead of the norm, where I freeze and clench my fist, talking in monotone, I would sometimes just stare. I still had the others, but it was nice that I noticed an improvement.

Any type of hormone you take will take up to six months to start effecting the body. At first I was discouraged. I was still having seizures, but my sister told me that I shouldn't worry because hormones take a while to start the effect. I know I will always have epilepsy. That is something that is a part of me. I don't know if the seizures will ever go away, but I have hope.

At the age of 13 when I was diagnosed with epilepsy, my world came crashing down, along with my self-esteem. I used to be energetic and happy when I was younger, expecting to drive at 16 with my friends, but that changed. No driving for me. However, I have grown so much both physically and mentally. I am stronger than I ever was. I am proud of myself and who I have become.

Yesterday at work, I was having some simple-partial seizures. Someone asked me to go get some ice and I said okay in my monotone voice. I always keep my drink on top of the ice machine, and I picked it up. I noticed my old drink from Saturday was up there, and I picked that up. Next thing I know, I dropped one of the drinks, and my Powerade spilled everywhere. Luckily, it spilled on top of the grate where the melted ice goes. My manager asked me a couple minutes later if I was okay, and I said yes. He hadn't seen the spilled drink. A couple seconds later, my other manager came out, and watched me, concerned. They took me to the back and I sat down. Something that bothered me was when I was standing by the ice machine, and my co-worker was staring at me. When I was sitting in the back, I heard both the managers and my co-worker talking like I was a child. They were saying how my eyes were super dilated and how I said I had dropped my drink. I felt incredibly embarrassed. Now, don't get me wrong, they are very nice and have talked to me about my epilepsy before. They know all about it. A few days ago, I was called into the back, and one of the owners talked to me about my seizures. He was quite nice about it, and genuinely cared about my well-being. He talked to me when he saw me sitting on a stool, and he had me go in the office, and I sat in the big comfy chair. I sat in there until I felt well again. I had no more seizures that day.

I am at the airport right now, headed to Ohio to see my sister, brother-in-law, as well as my niece and nephew. It's weird to me, taking a break. All I've done since July is work. Non-stop. I definitely need this. This is one of the sisters who I lived with. So much has changed since then.

I am so grateful for all of the support I have in my life. My family has done nothing but help me, supporting me, making sure I am okay. Though they do not have epilepsy, they do all they can to make sure I am okay. I'm grateful for my best friend, who has always been there for me, and treats me like I am normal. When I have seizures in front of her, she acts like nothing is happening, and waits for me to come out of it. I can't thank her enough.

I want to say something to all of you. No matter what you have going on in your life, you can do it! It doesn't matter if you think you are weak. You aren't! You've accomplished so much, and if I can do it, so can you! Never compare yourself to others because you are you. If you don't believe me, that is okay. I believe in you!

Friday, December 22, 2017

Life Is Chill....Sometimes.

Almost two months. It's been awhile! Lately things have been somewhat stressful for me, so I hope you don't mind if I share a few things with you all.

I have two jobs. At the time, it seemed like a good idea to get a second job and earn more money! After all, I don't get paid a lot working at BL. Now, don't get me wrong, I love working at CFA, too. However, a week or two into it, I was working so much, I literally worked every day. Both jobs are part time, but between the two, I get about 50 hours a week. I'm already a tired person, but having to work twice as much has definitely had a toll on me. I've grown irritable, I get headaches often, and I lack energy. I've taken into drinking more water and eating healthier though, which is not easy with my jobs. I have to really put an effort into it. BL doesn't have fresh food. Nothing nutritious. CFA has healthier options, but it's not something one usually eats everyday, no matter how delicious it is.

The BL I work at is closing soon. We're being kicked out because we lost our lease. Fun, right? Decades of business and people coming and going, and 'ope! Time to get up and leave, everybody! I'm upset. I love working there and I love the people I work with. Although, I am getting quite tired of having to repeat the fact that we are closing, hundreds of times a day when people ask why things are on sale or why the store is getting empty. This is a conflict. I'm sad that BL is leaving, but I think it is best for me because I don't think I can last any longer with both of these jobs. The official closing day is January 13th, but the way things are clearing out, I predict it to be sooner.

It is the 22nd of December, and it doesn't feel like it's that close to Christmas. I am excited for it, I guess I am just so exhausted from everything, that I've lost track of time.

What about my seizures? How's the epilepsy and VNS coming along? Well, VNS is the same. I discovered that though my VNS magnet is extremely strong, the effect isn't the same when I am wearing my work uniforms. When I try to swipe it, I don't feel it as much, which worried me for a while. One day, I was just wearing a tank top, and when I swiped my magnet, I went into a coughing fit, which is a good thing. So, that is something new. Also, I've been going to different doctors, because I'm trying to keep up the hope that I can someday be seizure-free. I've been to an endocrinologist, hoping that they could help me. A long time ago, I realized that the monthly seizures I have, are when I am on my period, or ovulating. TMI, I know, but this is important information. I have had a total of three neurologists since my first seizure in 2009. All of them have helped me in their own way, even the first one, a lame-o, who diagnosed me with epilepsy. However, my current neurologist, I have seen her twice in the four years of being her patient. She never has time for me, so I see her colleague. I have always liked her, but in this past year, she hasn't done a whole lot to help me. Even with the VNS, I had to bring up that I wanted to get it. When I learnt about the possibility that my seizures could be linked to my period, I asked her what my options were. She told me a few, one being birth control, which got my hopes up. Each one was a let down, though. Every time I asked if I could try one of them, she told me that they never work, and that really, there isn't anything else I can do for my epilepsy. As I am sure you can imagine, that did not lift my spirits. As a result, I have slowly been losing hope that I will ever be seizure-free. My mom and sister have not let that stand in the way, however. As my sister told me on the phone one day, "Sara, we are not going to give up. When a doctor can't help you, find another doctor. If that one can't help you, find another one that can." I'm grateful for that, because I know that even though I am feeling like nobody can help me, she doesn't.

After the endocrinologist couldn't help me, my mom made an appointment with another doctor. He is a gynecologist. I met with him a couple weeks ago, and he told me I am the first patient in 20 years that he has heard of periods and seizures coinciding. The technical term being Catamenial epilepsy, as my mom had found online. After about 45 minutes of talking, he decided that we could try birth control, and that that could possibly help my hormones get out of whack. Who knows, this could not work. I am willing to try it though, and have been for my third week now.

Gosh, I hate seizures. They're embarrassing and just plain annoying. Though I do NOT wish seizures upon ANYONE, sometimes I think it would be nice to have someone without epilepsy, know what I am going through.

Never fear!

Monday, October 23, 2017

An Unusual Post

Hello everybody. I have been wanting to write this post for a while, but I haven't got around to it. You know how everybody is different? They all have their own story and things about them that you may not know? For example, people don't just look at me and think, "I bet she has epilepsy. Yeah, she looks like she has seizures." That isn't how it works, and I think it's rather intriguing how different we all are. Someone who seems like they have nothing wrong with them on the outside, they have their own struggles. I have a point, I promise. I'll get to it.

Last post I talked about how I was going to be going to an endocrinologist to find out more about hormones and whether I should take progesterone for my seizures, because they occur on my menstrual cycle. On Wednesday I had my appointment. It went well, though I am sad that this doctor is leaving. She is incredible and made me feel so comfortable. It was interesting because she had never heard about seizures and hormones affecting each other. It was new to her, but she was kind and has been doing research on it. She's going to pass it on to the other person we will be meeting with. On Friday, I got my blood taken, and that was quite the adventure. I don't want to go into details because it was rather embarrassing, but let's just say that it didn't go as planned. However, it got done and now I am waiting for the results. They want to find out why I am always so fatigued and want to test some other things, as well. Overall, the appointment with the endocrinologist went well. I have another one in November.

Sometimes it seems like I am missing out on so much, due to my health condition. I've always thought, "Why me?" Really. Why me? Of course I have good and bad days, but that is the general question I have on my mind. I know everybody has something. I don't want to seem smug, but I don't understand why this happened to me. I meet people with conditions that are much worse than mine. But that is another thing. Are they really worse? Is one thing more terrible than another? I believe that they aren't "worse than the other". They're just trials. I don't know why I have seizures and why my family doesn't. However, they have things that I don't.

When my sister was 19, she was diagnosed with Spherocytosis. Woah. What's that? Well, it's an extremely rare disease that causes your red blood cells to be sphere-shaped, rather than "bi-concave". Because they are misshapen, the spleen doesn't recognize them, therefore destroying them. That is a brief summary.

My sister had been sick for a while. Little things that were normal to her, were not, but she didn't know anything was wrong for a long time. When she was 19, she almost died. I was nine and when my parents told me, I was terrified. When the doctors found out what was wrong after tests and more tests, she had her spleen and gallbladder removed. The rest of our family was tested for it to make sure we didn't have it, which was a relief when we tested negative. Though my sister had to go through all of that, she made it through, and she is doing great today. She has two kids and is married to a pretty chill guy. <--- Funny, right? No? Sorry.

I actually don't know what my point was supposed to be. Let's go with, "Nobody is alone."

Tuesday, October 17, 2017

The Next Step

Where have I been? Well, I've been living life. I haven't gone anywhere, but I've been working and haven't felt inspired to write. I write when I have something I feel I need to say. I don't believe in writing just for the sake of getting something posted.

Work has been great. I continue to learn new things everyday, and I love the people I work with. Some of those people have left, but I am grateful I had the chance to work with them. They're all quite different, and I enjoy getting to know each of them. I've been fortunate to start working more hours, as well.

A month or two ago, my mom and sister went to New Orleans to an Autism Conference, starring Temple Grandin, who in my opinion, is one of the most extraordinary people. If you don't know who she is, look her up! A movie has been made about her that I fully recommend. Anyways, I don't remember all of the details, but my mom met a man there who I believe was a pediatric neurologist or epileptologist. He and my mom got talking and she told him about my seizures and the story that goes with them. She made sure to tell him that I have seizures when I am on my period cycle every month. They occur before, during, or after. Oftentimes when I am ovulating. He told my mom that it sounds like I should get my progesterone levels looked at with an endocrinologist, that I would possibly be prescribed progesterone and that that may help with my seizures. It makes perfect sense to me. I read up on it, and I will attach the link to one of the websites. https://www.epilepsy.com/learn/professionals/refractory-seizures/potentially-remediable-causes/catamenial-epilepsy

On Wednesday, I have an appointment with an endocrinologist. The pediatric neurologist my mom met said that I would most likely have to get my blood taken five times this month or next, so they can monitor the hormones in the different stages of my cycle. I am a bit nervous being that I hate blood and I almost pass out each time I get it taken, but it'll be worth it.

Yesterday at work I had some seizures. The night before I had a couple, but they were barely there. Although, yesterday when I woke up, I knew I would have seizures. I had a feeling. Sure enough, later when I was called to the register, I had several in front of customers. I had different reactions, as usual. One lady was nice and made sure I was okay. Another was not cruel, but not kind. Her children were laughing along with her. I'm getting used to the reactions people give me. I have had to endure them since I was 13 years old. They don't affect me as bad, but nevertheless, I'm affected.

I worked today. I cashiered most of the time, and what do you know, it was seizure time! One of them I just told the customer that I was out of it. Another time I don't think anyone noticed, which was great. I have to think of the positive sides to all of this, but I can't seem to find any. I'm not trying to depress anyone, but it's really hard to be positive with epilepsy, you know? I think something positive could be that I could be getting closer to figuring all this out.