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.


Saturday, September 9, 2017

What Seizures Can Do

It's been a while, but for a good reason. I don't want to simply post because it has "been a while". I want to write good material, and not just gibberish. Today I feel like I am ready to write again.

After reading my previous post, I realized that in just two months, things have changed! I am still working at my job and I love it. It's been a growing experience for me! People have left after working  there for years and years, and it's been sad, because I grew to love them, but the new people are fantastic. Another thing I love about my job is how productive I feel. I am able to do a bit of everything and I feel needed. I learn something new everyday, which helps me grow.

Obviously, seizures are still apart of my life. Yes, unfortunately, I have had seizures at work. I hope that I won't have seizures when I am at the register, interacting with people. However, I have. Some of the most embarrassing times I have had, but I got through them. A lot of the people stare at me like there is something wrong with me; like I am a freak. As some of you know, this is one of my greatest fears. This man who noticed a seizure treated me like a child. "Hey, you keep going sweetie!", he said. "Thanks", I responded. I looked over at the door as he walked out, and when he was already outside, he turned around and gave me a "thumbs up". I will tell you, that upset me. He may have been trying to "be nice", but that is not the impression I got. I even told a couple of people what was going on, as I froze, trying to figure out what I was doing. "Oh, here's your receipt", I said. So, there's that. I have had seizures as I have been stocking the shelves, talking to a manager, who is really sweet. I told her after some seizures at the register, that I had been having them, and that I thought she should know. I proceeded to get a drink.

About a week or so ago, a woman came in and she mentioned she had epilepsy. We chatted for a couple minutes, and it was nice to bond. More people have epilepsy than you think!

I've been living at my new apartment with my best friend for about a week and it has been great! I'm able to ride my bike to work, and I always stay on the sidewalks.

Friday, July 7, 2017

Things Are Turning Around

I have been home for about a month now. Originally, it was hard to adjust. Being back in the hot weather with dry heat; not easy after being in the humidity and rain. However, I have gotten used to it again.

Immediately after I got home, I started applying for jobs. I needed money and I had no source of income. Also, I was planning on moving out of my house to my own apartment whenever possible. Day after day, I applied for more and more jobs, and nothing ever came of it. As you can imagine, that was difficult. I had received a call from one of the places I applied to, and they told me I wouldn't start till August, and I would have to be monitored to see if I was worthy of being a full-time worker. So, that did not work out. I probably applied for 20 places and nothing happened. It was frustrating because here all of my friends were getting jobs, and I couldn't get even one. Eventually, a place I had started an application for, called me. I hadn't finished the online application, and I know I did NOT click submit. However, on the way home from a camping trip with my mom, I saw that I had a voicemail. It was a store I applied to, and they wanted to know if I wanted to come in for an interview that next Monday. It was surprising to get the call, because I wasn't sure how they got my application. I decided to go to the interview. I thought the interview went terrible. I didn't make any sense, and after rambling on, I would say, "does that make sense?" I just knew I wouldn't get the job. The interviewer told me that the company would email me with a background check and they would get back to me. The next day, I got a call and I accepted the job! I started the next day. So, I now have a job! I really do enjoy it. The people are friendly and I have come out of my shell and introduced myself to coworkers. I do not want to dread work and feel alone, so I told myself I needed to push myself and get out there. It worked!

About a month ago, I was talking to my best friend who is currently out of the country. I was telling her that I was probably going to move out of my house this fall. She was excited, and that led to me searching for apartments that we could live in together! I sat on my laptop for days, looking and looking. Finally, although we did not want to, I realized that it would be okay to have some roommates, as long as I was rooming with my best friend. We are very much the same, where we would prefer to live alone. Anyways, I found us a place, and we finalized everything! Not only that, but it is super close to my work, and I can walk to it! I feel very fortunate.

Seizure-wise, I was surprised when I went camping. It was high altitude, and I had NO seizures. A few days ago, however, I did have a cluster. Not fun, but it's okay. It's been especially hard because it's been in the high 90's here, and my body has been stressed out from the heat. I'm trying to drink a lot of fluids. I also use my VNS magnet when I have seizures, so that has been quite helpful.

Sunday, June 4, 2017

An Unfortunate Seizure

So, something unfortunate happened. On June 2nd, I had a grand mal seizure. Yep. I have not had one since December of 2014. I was alone in my sister's basement on my bed when it occurred. You're probably wondering why it happened.

I had made it through "that time of month" with no seizures. That is the time I have my monthly cluster of seizures. I was fairly excited that I had had none. A few days after my cycle had ended, I was watching some YouTube videos, and I had some seizures. Nothing too bad, just the usual. However, my heart began to pound and I freaked out a little bit. I felt sick and had some strange feelings that I cannot describe. I texted my sister, but she was asleep, so I decided to deal with it on my own. I knew that I needed to take my medications, but I was afraid they would come right back up. Finally, I swallowed them, and I went to bed, breathing hard. The next morning, I went upstairs to take my morning medications, and I looked at the spot from the night before. Most of the medications were still there. I had only taken two of the pills. Only 1200 mg, when it's supposed to be 2300 mg. I knew that wasn't good, but worse had happened, and I knew I would just have to deal with the seizures. Unfortunately, early afternoon, I was lying in bed, and I felt a seizure coming on. However, it was not a simple-partial seizure. It was a grand mal. I knew that feeling. The jumping feeling in my stomach. The out of body feeling. There was no echo, because nobody was there to talk. My heart was beating hard and fast. After it was over, my body was in shock. I wanted to text my sister who was upstairs, but my cognitive functions were not working well enough. When I was finally able to text her, she came right down, and helped me.

Shortly after the seizure, I had to start packing because we were going to drive to Kentucky. I had never had to do something so fast after a grand mal. Whenever I have had one, I rest all day. I had no choice this time. However, my cognitive functions were still askew. My brain could not wrap itself around the fact that I needed to pack. My sister eventually came down to see if I was done, which I was not even close to. I had about four pieces of clothing in my bag. It was scary to not know how to do anything. The rest of the day was hard as well. I wanted to talk, but the words couldn't form well. My brain was fried.

I had a grand mal seizure just three months after I had my VNS implanted. It was not turned up very high, so it did not do a whole lot. However, this last grand mal, I noticed a huge difference. I didn't twist my body to the left. No twisting at all. It wasn't as long, which was interesting. Usually I don't have an idea of how long they last, but I knew this time. I am so grateful I have the VNS.

In previous posts I have discussed how grand mal seizures wipe ALL of your energy from your body. It has been two days, and I am STILL exhausted. My body aches and I want to sleep all the time. It is definitely better than before, though. Over the past almost nine years, I have learned more than I ever thought was possible. I know that things happen that are out of my control at times. Grand mal seizures are by far, the scariest things I have ever gone through, However, I know that I am stronger than I have ever been. Never would I have thought that this would happen to me. 12 year old Sara thought that she would grow up and be able to drive at 16. She thought that she would just be a normal person who never in her wildest thoughts would be epileptic. Things change in the blink of an eye, though. And that is okay. We get through it. We get stronger everyday, no matter how difficult it is.

Sunday, May 14, 2017

A Bit Of Everything

2016 was a rough year for me. Not only then, but now. I have felt completely vulnerable, like I have no clue what I want. Now I know some of you are probably thinking, "Sara, you don't need to have your life figured out just yet!" or "You're so young! You have plenty of time!" As I appreciate the support from those people, I don't feel like that, because I'm not 18 anymore. I used to tell people that I was going back to college, and that was pretty much my default answer. Almost four years later, that is no longer the case. I am not in college now. I am a nanny, all the way across the country.

As I said, I have felt like I should know what I want to do. I see the people I went to high school with. I see them dating, getting married, and having kids! It's not that I want those things now, but it still bothers me. One of those "irrational" thoughts, you could say. However, a few months ago, one of my sisters called me up, and sounded hesitant. She told me she had a "big favor" to ask. She asked me if I would be willing to be her son's nanny for a few months. I immediately said yes, knowing that that was what I needed to do then. At the time, I had been looking for jobs, but I could not get hired for the life of me. I believe it was a blessing. At the end of February, I flew out to Kentucky and moved in with my sister, her husband, and her son. I had been there for a couple weeks, when I packed up and drove up to Ohio to visit my other sister for a few weeks. She has two kids, and I was able to take care of them a bit. After that, I went BACK to Kentucky to finish my nanny job for about a month and a half. I am now at my sisters in Ohio, as her nanny. CONFUSION, I know. It has been an exhausting few months, but I am so happy that I am here. It has been so fun being with my family.

Stress is one of the triggers for seizures, and I have definitely had a lot of stress. Lack of sleep is one of them, too. I've had to learn how to discipline myself, because one way or another, I have a job to do. I have to wake up every morning and babysit. It's my duty. A few months ago, I would not have been able to do this. I could barely wake up before 10 in the morning. As I said, stress and lack of sleep are big triggers for me, and I have had plenty of them, not including my regular clusters that occur once a month. It's hard, yes. But, I have powered through it, and I am proud of myself.


                                                             Something different.
                                                                 

I'm going to talk about one of my nephews, E. He has always been a special baby. Always sweet and loving, and I love him more than anything. When he was born, we found out he had a ton of allergies. He wasn't able to have regular formula. It had to be this expensive formula called Alimentum made by Similac. It had to be the liquid formula because he was allergic to dairy and soy, which is found in the powdered version. A bottle of it is about $10.99 at any store. I remember following my sister around and she would buy every bottle on the shelf. As E has grown older, he has had troubles with his allergies. One tough ride. He has trouble sleeping, and will cry and cry for up to an hour. My sister has known he has behavior issues, but when her family moved to Ohio, she wanted to get a diagnosis if she could. After some tests, the doctors were able to determine without a doubt, that E has autism. It wasn't a big deal for me, because I knew he had behavior issues, but hearing that word, "autism", threw me off a bit. I will tell you, though. Nothing has changed whatsoever.

I used to be uncomfortable around people with disabilities. This was up until I was diagnosed with epilepsy. I did not like "different". It made me nervous. However, my perspective changed completely once I learned that I, too, had a disability. It's made me be able to empathize with people who are different. Not just people who have seizures.

It is only natural for people to feel uncomfortable with something "different". People get scared and that is okay. That is how it was with me. However, the more knowledge you gain about something, the less nervous you are. Having been one who has had a disability for almost nine years now, I've learned that it is nothing to be afraid of. I am grateful that I am able to be around my nephew because I am learning so much about autism. My mom has worked around people with not only autism, but all sorts of disabilities, and I have gained a lot of knowledge from her. As I play with E, it's so fun learning. I have never known sign language, (besides the alphabet) but now I have learned a couple of "phrases" such as, "I love you". I taught him how to sign it, and he will actually sign some of it back every once in a while.

It's not about the autism. It's not about the disability. It's about the person and some things that have to be accommodated to help them. Yes, I have epilepsy, and it's tough. However, I am no different from anyone else. Yes, there are things that I cannot do. I cannot drive, but that is a positive thing because if I did, I might crash, and I could seriously injure or even kill someone. That goes for me, too.