How People Often React

I didn’t think I’d be writing on this blog again, but I felt like doing it the other day. I wrote out a new post and everything, then looked back at drafts I never posted from 2023, deciding I liked one of those better. So, here it goes.

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If you come to this blog looking for classical "inspiration and uplifting words," you won't always get it. But that's real life for you. My parents are always telling me to write happier things, but then it wouldn't be authentic. Plus I don't think I could do it right now, anyway. Actually, that ties pretty well with the topic I chose. Can you believe it? I have a topic for once! Those who have read my blog in the past will know that I have never been one for "staying on topic" for posts, and I rarely have a topic planned.

Todays topic was chosen from a list that my sister made of post ideas in 2022.

Humans are weird. Whenever someone has something to say that isn't the happiest, the person responding almost always tries to make it cheerful. It's like nobody can leave something be.

Example: Julie is meeting her friend, Zoe, for lunch and sees them at the restaurant across the street. As she sits down at the table her friend is at, her phone falls out of her pocket and onto the concrete.

"Dang!" Julie says. "I hope the screen didn't crack," she adds as she picks it up.

"Let's see it," Zoe says. She watches as Julie sets the phone on their table, and, sure enough, there is a huge crack down the screen.

"NO!" Julie cries. "It's awful! Look at it! It goes across the whole screen!" She holds it tenderly and turns it to see it from all angles.

"Hey, no worries!" Zoe assures her friend quickly, an anxious look on her face. "You can get it fixed easily." Deep down she knew it probably wouldn't happen.

Julie sighed as she set down her cracked phone. "It'll cost at least $250 to fix it, Zoe. It's out of warranty."

"Oh, well...um..."

"It's all good," Julie says as she attempts a smile for her friend.

Okay, that was a terrible dialogue, but I hope you get what I was trying to imply. No matter the circumstances, we automatically say something "is okay" and "is fixable." Even when things can't be.

The reason I wrote that horrendous scene is because of something I get a lot. See, throughout the years I have gotten many reactions when someone finds out about my epilepsy and seizures. It's usually either, "Wow, I am SO SORRY," as if I am dying. They give me this look of pity that makes me want to punch them (sorry, but it's frustrating). And sometimes those people aren't genuine at all. The other reaction I tend to get when someone learns I have epilepsy and seizures is "the stare." A lot of the time they say, “Oh,” then just stare at me with an uncomfortable look because apparently I’m a ticking time bomb. Sometimes I just want to tell them it’s okay to leave. Now I don't particularly like either of them, and there is something they do called "false optimism and hope." Basically it's when I tell someone, let's say, how I will never drive. That person proceeds to tell me, "Of course you will!" Lady. No. I will not. If I did, I'd crash and hurt myself, someone else, or both. There's also the, "I know you will be seizure-free one day!" Now, I know people sometimes have good intentions, but I really reallllyyyy dislike it when someone tells me I will be seizure-free. First off, I know I won't be, unless a miracle descends upon me. Another? It reminds me that I am different and that's something I hate to think about.

Look, I know some people really just want to help and make me feel better. I just want to put out there that sometimes telling a disabled person that they will get better has the opposite effect, and makes them feel worse. I mean we are already different and are reminded of that daily. Does this make any sense, or am I just rambling? I think it's the latter.

Sometimes all we want is a listening ear. You don't have to fix anything or reassure us, just listening helps tremendously.

You Have Epilepsy? Off to the Lunatic Asylum You Go!

I've been trying to figure out what I want to write for my next post, and I think I've finally got it. I am working on something, and I came across a person from the 1800's who died from epilepsy and one other thing. It said she was in a lunatic asylum.

Did you know that if I had been born in the early 1900's and prior, I would have been called a witch, put into a lunatic asylum, gotten a lobotomy, and if they were *really* nice, put me in a place for epileptics. I'm not kidding. In the 1600's during the Salem Witch Trials of Salem, Massachusetts (for which I have relatives that were both convicted "witches" and accusers), they would have considered me a witch because of my "fits" (I really hate that word). Most likely I would have been drowned, been one of the 19 people hanged, or even like the poor man, Giles Corey, who was pressed with rocks. Of course this is if the seizures hadn't killed me or fried my brain by that point.

I found out that I could have been thrown into a lunatic asylum in the 19th century and beyond, simply for having epilepsy. I watched a video about lunatic asylums that I will share below, and patients with epilepsy would often receive a "special diet" that was different from the others. Apparently they were not to be given foods that would "upset them" (the amount of quotation marks I have to use is crazy). Things such as corned beef with cabbage, and "heavy, indigestible foods." These places were literal torture, and I am sure the seizures would be even worse if I was in one of them. The stress, torture, malnutrition, etc.

In 1935, when the genius doctor named António Egas Moniz invented the lobotomy, he would have looked at me and said, "Sara is the perfect candidate for this groundbreaking procedure! She has a myriad of mental health issues and epilepsy!" I am sure I would have come out of the surgery either dead or with no bodily functions. Look at what happened to Rosemary Kennedy! I would like to think that my family wouldn't have had me get a lobotomy, but if it was normalized then and an option to help, maybe they would.

I discovered that one of my great-uncles married a woman whose cousin had epilepsy and ended up in a place called the "School for Feeble-Minded and Colony for Epileptics." Great name, huh? It changed purposes several times. This particular girl I am talking about was born in 1893, and the first seizure she had was at a year old, which temporarily paralyzed her right side. She was affected in every aspect of her life: having to miss school and other activities, having a hard time writing, weakened memory, and wearing protective padding on her head. She lived with several family members for a while until her dad decided to put her in the Colony in 1909. This makes me angry every time I think about it, and I know I'm technically not related to her, but I am close to this one. The things she went through daily, I also struggle with. She was just tossed into that place and stayed there until she died in 1920 at age 26, from either pneumonia or the result of a seizure (unsure which is correct). I was 26 when I discovered her, so it was hard. I think there's a mixture of things that bother me, but I really hate the thought of this girl enjoying her life with her family, then being thrown into that institution, if that is what they want to call it. I can almost feel the betrayal, and I am wondering how she felt. I understand it was a different time, but I don't imagine it would feel any less painful to have your family put you in this place just because you have epilepsy and they don't know how to handle you. I researched the place and it was supposedly a "nice place" that was also a school, and they say that they were supposedly "helping families cope with having a child with a disability." Something tells me these kids didn't get a lot of visitors, and I don't think my "relative" did either.

What I am saying is that my life is difficult, living with epilepsy. The unpredictability of the seizures, modern medicine only doing so much. I will say I am grateful I am not in some lunatic asylum or being strapped down or hanged. We seem to have progressed thus far. Maybe one day they will actually use the donated money to research and find better treatments.

Above is something I happened to find on Reddit when I searched "lunatic asylums" on Google. I was trying to find out if having epilepsy was actually a legitimate reason to be in one, since the person I found earlier had been in one when she died. These are apparently some of the reasons one could be admitted and they are completely ludicrous. I hope you enjoy reading them!

The link to the video I found on lunatic asylums is here.

The lesson: Be grateful that you weren't sent to a lunatic asylum because your son got married, or because you were feeling lazy.

Living Life

I keep waiting for my life to begin. Every day I think of the things I want to do and what I wish I could do, and I think, "I just have to wait a bit and then this will happen!" I have realized there's a problem with that mindset. Whether I like it or not, my life began over 27 years ago, and it's going to keep going no matter what. It won't pause, it won't let me take a break until a miracle happens to let me love things. No. It's time that I keep that in mind because I only have one life, and no matter what happens, I need to live it to the best of my abilities.

Now that I said that, I also have to say that it is easier said than done. I have so many health issues, and it makes daily life incredibly difficult to not just enjoy, but live. One of my conditions is called "Migraine With Aura." I have mentioned this in the past, but I called them "Complex Migraines." These mimic strokes, and even when they don't take me to the Emergency Room, I am in bed all day. I get extreme double vision and can't see squat or move. It's a whole thing and very traumatizing. The thing with these is they come on at random times. I will be fine the day before, but then the next morning I get one. That makes it difficult to plan things, and I have had to cancel many appointments because of it. Because of the unpredictability, I can't be sure I will be fine on the day of plans. Let's say I want to fly somewhere to visit family. Well, that may or may not happen because there is a risk I will wake up the day of my flight and not be able to see or move without assistance (and even then, I almost fall, and have). These have gotten more common over the years and it's distressing. Is it so much to ask that I go see family like I used to? Apparently so. 

I really don't want to be depressing, and my parents are always telling me to write "more uplifting and cheerful things," but then it wouldn't be authentic, and there wouldn't be a point to this blog. Sorry, Mom and Dad.

So I think I will just have to do the best I can with this life thing. I may not be one of those people that seem to have a life calling, and I may not be able to do things that others can, but I can do the best I can. And I really need to work on not talking bad about myself, but I've done it for a long time (since I was diagnosed with epilepsy) that it's just natural. I know, I know, bad Sara.

One thing I am proud of is how I have handled the past year and a half. I decided at the end of 2021, when my mental health was at its absolute worst, that I needed to take care of my mental health and that is what I have been attempting to do. It hasn't been easy, and it has involved doing things I didn't think I could do. I thought I was too weak. But I had help from someone and you know who you are.

Life is short, that saying is true. Sometimes young people are taken way too early and it's absolutely not fair, but it does show that we need to live life how we want (or are able) because life is unpredictable. I think I am going to just do the small things that make me happy.

I Deserve A Life

Want to know something frustrating? The fact that I have to fight to have even the most basic of a life. I am not going to whine, at least not now, but I do want to say some stuff.

Everybody has something going on, right? Doesn’t matter if it’s mental or physical. But what’s the basic life that most people have? You go to school until you’re 18 and then you go to college if you want, right? Oh and you probably got a job in your teens and maybe got your drivers license. But then you go to college and take whatever classes you want, at whatever time you want, probably working as well. After college you have a degree and probably do something with it, or maybe you decide to pursue something different. Oh and you’ve probably lived on your own or with roommates for a while, and maybe you’re dating and gonna get married or something. Maybe have kids.

Okay I said I wouldn’t complain but I guess I am. Well I guess what I am trying to say is that you should be grateful if you can do any of those, because the ones I was able to do, didn’t last.

I am currently working on fighting for basic needs. For example, getting my own food. I don’t have a job because I can’t work. So I rely on my parents. And I finally got SNAP (food stamps), at least for now, but the government does not really like helping people with disabilities. They tell you whether you are disabled or not and they’ve told me I am not before. How fun, huh?

It really takes a toll, and it’s quite humiliating, trying to get Disability and Social Security benefits. Going through so much and sitting on the phone for hours being #106 in line, only to be talked down to when the specialist answers. They have you scrambling, trying to prove that you are indeed disabled. I’m not a fan.

This may have been all over the place, but I’m going through a lot (ESPECIALLY) right now.

I will say how grateful I am that I am on Medicaid, because I would be doomed without it.

Nov. 11th 2009

Today is a sucky day. Why? Because November 11th 2009 is the day I had my first official seizure. I've talked about it before, but I am going to do so again, as many of you have only seen a post or two. Also, I want to. I was getting ready for school. I was in the 8th grade and had turned 14 years old a couple months before. It was a normal day, although I had decided to get ready upstairs instead of in my own bathroom, downstairs. Not sure why. I was brushing my hair, that's what I remember doing beforehand. The next thing I heard was banging. That was my head hitting the cupboards on the floor. My mom heard a noise and ran to the bathroom. I was against the door and she and my dad had to push themselves in. They told me later, that my lips were blue. Apparently they called 911 and I got looked over, though all I remember next after the bathroom is sitting on the couch in the front room and seeing an ambulance in front of our house. I asked my mom who it was for and if our neighbors were okay. She told me it was for me. I don't remember if this was before or after the paramedics had come in to check me out or not, but my mom is sleeping right now and I don't feel like waiting til later to write this. This is my perspective, anyway. Next thing I know, I am being loaded into the back seat of the car. Apparently the ambulance charged a lot of money to drive me to the hospital, and my parents live pretty close to the hospital, so they decided to just drive me themselves. I remember a neighbor walking over across the street, asking what was happening and if we needed any help. Next? I'm in the ER. My mom is filling out paperwork. Then I am being rolled around on a bed. I think I got tests done, though I don't remember what. Probably an MRI and catscan, now that I know about these things. I do remember the ER doc telling me that it was probably a one-time thing and that it is common for a person to have a seizure in their lifetime. Being that I had no history of seizures, we didn't expect a second one. BOY, were we wrong. I had another one later that year during computer class. I don't feel like writing about that one, though. I have written about it before in previous posts so feel free to find it. I will be writing about it again, though, so don't worry. "Well, the definition of epilepsy is two or more seizures". That is pretty much what my first neurologist said when I saw him after I had another seizure. My heart SHATTERED. "EPILEPSY???? How???? I am healthy!" I didn't say that, but it was on my mind. After that appointment, my mom and I sat in the car in silence. She watched me as I processed the new information. I believe I started crying? My mom felt so awful and helpless, so she asked me what fun thing I would like to do. We ended up going to the mall and she bought me some stuff I had been wanting. I have gone through so much with this condition. I've lost friends because of it. Nobody understands it and nobody wants to. They get freaked out. I don't blame them sometimes because seizures are scary. I just wish people would stop to listen so they can realize that seizures are not just the grand mals you see on TV. They aren't just the ones where you fall on the ground and shake. There's SO many different types of seizures. Some are just staring off into space! And if someone would just take the time to learn that, maybe they wouldn't be as scared? Also, think about the person actually having the seizure! You think YOU are scared? IMAGINE BEING THE ONE SEIZING! Sure, not everyone remembers them (though I do), but waking up from them? There is no way to explain the fear and anxiety. I REALLY hope you all take some time to at least learn the first-aid for seizures, because that can save a life. If you don't want to read up on epilepsy, that's okay. But please, for the sake of those experiencing something they can't help, PLEASE learn how to save a life.

My "Support" Baby Cats

I’m going to briefly talk about my cats, Marco Polo and Spider. They are nine years old and litter-mates. They are from the second batch of kittens we fostered, and their mother was with them. Marco is a tabby (sorta) with a white tuxedo in front, and Spider is a black cat. I love them so much.

They have always been my support kitties (they like my mom better), and are here for me when I have seizures. They can always sense when one is coming along, it seems. Spider is quite needy and loves to cuddle, so when she cuddles and sits on my face, I figure it’s her being…well, Spider. But, then I’ll have a seizure and realize she knew it was about to happen. It’s hard to explain (dogs are not the only animals that can sense seizures). When I have a seizure, my mind goes somewhere else. However, when Spider sits there, it keeps me aware and in the now. She doesn’t judge me or stare at me funny. She’s just…there.

Marco is similar, though he tends to sit on my vital organs only when he wants to be fed. When it comes to seizures, he’ll rub his face on mine, then sit down on my feet. He’s a big cat, so the weight “wakes me up”, and it's rather comforting, sort of like a weighted blanket.

One time, a few years ago, I was watching a movie by myself downstairs on the floor. I felt a grand mal (tonic-clonic) seizure coming on, and before I went into it, I noticed Marco and Spider right next to me. When I got out of it, I waited for someone to come to the rescue and be with me like they usually do, but my mom was upstairs. Don’t ask me how she eventually heard me because all I could do was grunt.

Marco has asthma, and I was the one who discovered it. I actually looked it up online and brought it up to the vet. Of course, he was not happy with me consulting “Dr Internet”, but I didn’t care. Marco was x-rayed and I was right. Although, apparently, Dr Internet was right, according to the vet. I’ve always felt a special connection with Marco because we both have health issues and they’re awful. He gets a pill sometimes for particularly bad days and gets an inhaler in his face twice a day. I take four different medications and have another pill for the same reason.

It may seem weird that I’m talking about how amazing my cats are and how they support me, but they do! They’re so important to me and them being their perfect selves has made my situation significantly better.

It's incredibly important to support those with health issues, and of course, supporting someone, in general, is also essential. I love that my cats are always here for me, and I hope they know that since I take ten pictures of them a day and kiss their tiny foreheads every time I see them.

Mr Marco Polo cat

Spider cat

Warning: Taboo subject: periods. A blunt post while I’m having seizures

I’m going to be real. Epilepsy is terrible and I hate it. I’m being blunt, and maybe part of the reason is that I’m actually having seizures at this moment. I don’t care, though! Those few people who read this need to know that though I try to portray myself as strong and that I’m conquering this illness, I also fall apart all of the time.

Epilepsy jumps at you when you’re least expecting it. Enjoying a conversation with a friend? Whoops, not anymore. Time for a pounding headache and awkward atmosphere. Shopping with your family and having some fun? Not anymore, you’re not! It doesn’t want you to be happy. It doesn’t want you to love life.

I’ve said before that every person with epilepsy has a completely different case. There’s so many types of seizures and oftentimes they look so different from another persons. As for me, I’m lucky that the four medications I am on control the seizures enough so I do not have grand mal/tonic clonic seizures. AKA: the kind where you fall to the floor and your entire body convulses. On the other hand, I still have seizures. Just tonight I was having a conversation with a friend and my brain said, “Whoops! Never mind! No enjoyment for you. It’s time to get one of your ice packs that you keep on hand in your mini fridge, slap it on your forehead and get into fetal position on the bed!” Not only do I get to do that, but I also am gifted a pounding headache that I always describe as feeling like “I got hit by a truck.” I don’t know what that actually feels like luckily, but I still compare it because I would like to believe it’s similar.

I have been lying in bed with the ice pack on the side of my face. I swiped the magnet I have for my Vagus Nerve Stimulator (VNS) implant and then I took a Lorazepam which I call my “seizure stopper.” I use it in case the seizures aren’t stopping completely with the magnet. Or if I’m really desperate.

Seizures are so frustrating, for a myriad of reasons. One of which is the “out of body feeling.” It’s what it sounds like. It’s as if you’re watching yourself, and not actually in your body. It’s a scary feeling, to be honest. Normally I get them when I have grand mal seizures. That’s if I miss a full day of medications. I’ll be in the seizure, and I feel like I’m watching myself. Now. I don’t have it that severe when I have my normal simple partial seizures, but I still get it every so often. My brain shifts into overdrive. Now, I’ll try to explain this next part the best way I can. One of the things I hate is being watched during a seizure. It’s so embarrassing and stressful. I don’t care if someone says not to be embarrassed because that doesn’t change anything! So, when I have the out of body feeling, my stomach will jump sometimes, the left side of my head will throb, and an “image” of me watching myself have the seizure pops up. However, it’s almost as if I’m picturing myself being in someone else’s shoes. I see myself but also what I would look like to someone walking in on me. Tonight, everyone is in bed. Nobody just walks in my room. But my brain will kick into that out of body feeling and think, “Look how weird I’m looking! I need to stop before someone walks in!” I’m not sure if that made sense to any of you but that’s the best way I can explain it.

I have described the seizures I have before, but I’m sure some of you have forgotten or haven’t read my other posts. I have Catamenial epilepsy and have simple partial seizures. I used to have complex partial and grand mals, but my medicine has kept them at bay. Catamenial epilepsy is hormone related. In general, epilepsy can affect hormones. Those people who have epilepsy and also a menstrual cycle, can experience increased seizure activity due to the hormones going up and down. However, sometimes people always have them at that time, and I’m one of them. There are several types. I am going to explain it and not sugarcoat it because periods are a taboo subject in todays society and they shouldn’t be. From what I have observed, I seem to get them at the beginning and end of my period. Another type would be when you ovulate, which I originally thought was the case until I kept better records.

“So, only once a month, then? Wow!” Well, no. I may have seizures at my time of the month but that’s not the only time. But I wish it was. Everyone has triggers when it comes to their seizures. Not everyone has the same ones. I believe I’ve discussed this before, but I will say them again. I get them when I’m stressed, when I’m anxious, dehydrated, haven’t slept enough and been sick. I also have to be careful with how much caffeine I have. Normally I can have a can of Dr. Pepper and be fine. So, you see, it’s not just one thing. I am not affected by flashing lights or sounds, though I know several people who are. I consider myself lucky in that aspect because I can go to concerts. There’s flashing lights everywhere at concerts.

My seizures look like I am staring off into space. If I’m talking to someone, I’ll either stop talking mid sentence, or I’ll repeat whatever I said. It’s usually the former. My left hand stops working and so if I’m texting, I can’t get my hand to work.

Well, the seizures have stopped, so I think I’ll stop writing now. Please go learn about seizure first aid! It’s incredibly important. I’ll give you a little bit of info on it, but please go inform yourself!

1.If a person is having a grand mal/tonic clonic seizure, make sure you are holding them safely on the floor. Do not let them hit their head. You can hold their head in your lap or use a pillow.

2.Turn them to their side so their tongue stays on the side. IT IS NOT POSSIBLE TO SWALLOW YOUR TONGUE! But you want them to have a clear airway to breathe. Loosen any tight collars.

3.Look for a medical bracelet, necklace, anklet, or even watch. If it says they have epilepsy or seizures, you don’t need to necessarily call 911 or your emergency number. If there is no identity, then call.

4.Time the seizure. Seizures should not last past three minutes! Any more and it can be fatal.

5.When the person wakes up, remain calm. They are okay! They don’t need water. Even when the person is awake, they’re still technically having seizure activity. It’ll take a little while for them to be fully comprehensive. This is normal! Hold their hand, smile, reassure them that they are okay. That they don’t need to be afraid.

I have a medical bracelet and have had one for years and years. It says my name on the back and epilepsy on the front. If I happen to have a grand mal seizure in public, I hope someone sees the bracelet and knows that they don’t have to call 911. In fact, a lot of people with epilepsy get frustrated because people automatically resort to 911 without even checking. It’s inconvenient, too. And expensive! The only reason I’d ever need one would be if the seizure was lasting longer than three minutes. That would then be status epilepticus. Serial seizures.

You never know who among you in your life has seizures, and it’s important to be prepared if they need your help! Inform the world! There’s so many with epilepsy out there, though so many people don’t know what it is.

Mental Health and Such

I believe this is my fifth draft I have tried to write since my last post. It’s been so long that I’m going to give a list of the things that have happened.

1. I had my VNS replaced in November 2020. Surgery went great.

2. My neurologist left without warning so I am now seeing someone else. It’s been over a year and I finally had a virtual appointment with my new one last March. I don’t know how I feel about her yet.

3. I got kicked off my parents insurance so I’m on Medicaid now.

Life has taken a real hard turn (which is saying something) the past year and I haven’t had the will to post or any ideas as what to say. But someone told me to write again because it is nice to read?

I’m going to be real with you all. My mental health and health in general has taken a hard turn since January of 2021. My anxiety has skyrocketed and my depression has been bad. That’s another reason I haven’t written. But it’s been so long I guess that’s not really the main reason. I’ve had a lot happen that really has messed up my mental state.

The thing is, my mental health is connected to my physical health. It is for everyone. So since my mental health is bad, it’s caused my epilepsy to get worse. Which honestly I’m really tired of. I have insomnia so I don’t sleep til 5 AM a lot of the time. Sometimes later. Like today.

I’m on Medicaid now. I tried to stay on my parents insurance but the insurance didn’t approve it, so I was forced off. I was worried that Medicaid wouldn’t cover one of my medications because it’s ridiculously expensive but they did! I am so grateful for it. I hate taking four medications that don’t even completely stop the seizures but the fact that I even have them is something I’m grateful for. If I didn’t have them I would be having grand mal seizures (tonic clonic) everyday.

I had to switch pharmacies because the one I used doesn’t take Medicaid, but it turns out that was another blessing. The one I use now is incredible and they’ve helped me so much. When I needed a medication filled but they didn’t have enough that day for a full refill, they gave me what they had. The people are so kind and I’ve never had a bad experience. My old pharmacy was none of those things.

This post isn’t organized well but I’m so tired physically and emotionally that I’m just going to go with this anyway. Hopefully I’ll get one out sometime that’s organized and possibly on a specific subject. Sometimes this seems to read like a journal.

I Need A New Battery For My VNS

My fertility endocrinologist got up and left her job without telling me, as I found out by calling to make an appointment with her. Evidently she left at the beginning of February, and not only left her office but the entire university. Luckily I was planning on stopping the hormone therapy I am currently on, so I don't need to worry about someone refilling the medications, but the fact that nobody told me that my doctor was quitting? I found out from a random guy who was just a scheduler. He didn't actually work for anyone. The conversation: "Yeah, I need to make an appointment with Dr. ____" I told the random guy who answered. "Okay, let me check her schedule and see when she has openings." I waited. "I can't seem to find her schedule. Maybe she hasn't updated it yet." "Uh..." I didn't know what to say to that. "Let me look some more." I waited, thinking how ridiculous it was that they didn't have an actual nurse talking to me. "Okay, it looks like Dr. _____ left her job on February 3rd. She left the university completely." SHOCKED. "Okay.... uh...." The man went on to ask me if I wanted him to find another doctor to replace her. I told him I would think about it. Here's the thing, though. I didn't seek this doctor out. She reached out to me through my neurologist and wanted to look at my case being that she deals with hormones and catamenial epilepsy is the type of epilepsy I have. I'll have to depend on my neurologist from now on. No more shots, no more wearing patches, and possibly no progesterone. Who knows what will happen! I am nervous, but that's nothing new for me.

I will be seeing my neurologist in April. Unfortunately since this isn't just a follow up from a previous appointment, I have to wait quite a while to see her. When I do though, there are some things we need to talk about. You all know that I have a Vagal Nerve Stimulator (VNS) implanted in my chest and neck to help control my seizures. Well this last June, I was told that I had 50% of the battery left and that it would be about a year and a half until the battery was dead. If I wanted to get it replaced I would have to do so before it died completely, otherwise I would have to start the entire process over again. When I meet with her, it'll have been almost a year since my last appointment, when means that I will most likely need to schedule a time to have the replacement surgery. Am I nervous? Yes. Yes I am. I got my VNS implanted on September 23rd 2014 and it was painful afterwards. Any surgery is, right? This was particularly hard because it was my vagus nerve involved, and it was hard to breathe. This replacement surgery shouldn't be as bad as they are only taking out the battery in my chest, and leaving my neck alone. Even when people get a VNS removed permanently they always leave the lead (wire) in their neck because of the danger involved in moving around the vagus nerve. I worry a lot in general. I've been thinking about the first surgery and also the hospital that performed it. Being that I am no longer seeing the neurologist there, I will most likely be having the surgery up at the university. I know it'll be okay, but I really hate surgery. I overthink everything and it doesn't help that surgery in general is pretty intense.

Last August I moved out of my apartment and have been living at my parents house. It's been difficult because I cannot work and I have applied for disability. However, it's painful waiting for months while the government goes through my medical history and takes their time while I am not doing anything. I would love to have disability because having no job is awful and I have no income. Being 24 and having people drive you everywhere has been one of the more difficult things for me to face because I was 16 years old over eight years ago and should have been able to get my drivers license. I know I'm not the only one who doesn't drive, but it's not enjoyable to feel like a burden to others and not being able to do anything about it. I've had times where my mom would be exhausted and needed something at the store. I should have been able to say, "Hey, don't worry. I'll take the car and get it for you." Instead I say, "I wish I could. I would do it for you in a heartbeat."

For the first time in a while I am looking forward to meeting with my neurologist because I need some answers. I've been experiencing seizures on a more regular basis and I'm quite tired of it, mentally and physically. You don't need to have a grand mal (tonic clonic) seizure to be exhausted. Because my medications control the grand mal seizures, I only have simple partials. Whether it be a cluster of seizures like I normally have or just one or two, it's electricity in your brain. If that doesn't make you wiped out, I don't know what will.

Being A Vegan

As of May 1st I started the vegan life. Why, I'm sure you ask? It's mainly for my health. There are a couple diets that people who have epilepsy try: Ketogenic and Atkins. However, the vegan diet has proved to be extremely beneficial in many ways, not just for the epileptics in this world. The removal of animal products from your diet eliminates harmful hormones and other substances added to create "better products". For example, hormones are injected into a beef cows bloodstream to increase their size for the benefit of people. Think about it. What are those hormones made of? When we eat beef, we are also consuming whatever the cow has been injected with. Now, I'm not saying eating beef is a bad thing. I'm just stating the facts that I have learned. Another reason for my change to a vegan diet is for moral reasons. I don't like the way animals are treated in order for us to eat them.

It's only been a month since I started this drastic change in my life, but I will tell you that it has been more difficult than I would have imagined. The first week was the worst. It seemed like everything I had once ate was now "banned". I went to a barbecue with some friends and the only thing I could eat was grapes and one kind of chips. There were hot dogs and hamburgers that I would have LOVED to eat, but sadly, I chose not to. That's the key word: chose. I am not required to do this. I choose to for my benefit. The part of the barbecue that bothered me the most was when they handed out Creamies. You know, the delicious popsicles? Everybody was eating them and the people handing them out were asking if anyone hadn't received one. It took almost everything in me to keep quiet.

One of the things that has been hard for me with this change is how I feel my life got boring when I started. I am eating a lot healthier, but my change in diet has made it so I no longer eat the things I love. I used to be a hamburger lover. I loved bacon and Cheetos. Reeses Cups were my favorite thing ever. Those are either meat or animal products. I'm surprised by how much animal products are in everyday things. I am hoping to find variety in my new lifestyle so I can be happy with food again.

Epilepsy and Pregnancy

Where to begin...
No, seriously. Where do I start? I never know.

It's been almost two months since my last post, and in case you haven't noticed, I am not the best at keeping up on my blog.

I've always wanted to be a mother. "I want to be a vet and a mom!", I would say as a child. Of course, the occupation always changed, but you get the point. It was when I was 17 years old that I started worrying about pregnancy and how I would even become a mother with having epilepsy. Would I be able to have kids? I knew I would have to change some of the medications I was on to reduce side effects to the baby, and that would probably mean I would have more seizures. But I'd done so much to decrease seizure frequency and if I had to change medications, it'll have been for nothing! I expressed my concerns to my mom but being that I was only 17, she told me that I had plenty of time to figure that out and not to worry about it yet. Of course, those thoughts of motherhood and epilepsy remained in the back of my mind and have never left.

A few months ago, those thoughts began to surface again. Something new was added to my list of fears, however. I am currently trying to work with my hormones to hopefully reduce my seizures. It's been a burden to think about. A few days ago, I went to the library and wanted to see if there were any books on epilepsy and medications. Of course I already knew there wasn't. The only books on epilepsy were one for beginners who know nothing about it, and some picture books for children that is about their friend who is "different". Instead, I opted to look at the pregnancy books. I figured there might be something helpful in those. Boy, was I right! Though epilepsy isn't much of a topic that people care about in this world, the two books I got had a few sections on medications and also on mothers with epilepsy. I've started reading one of them and it's been so helpful. I've learned about how to work with medications when you are wanting to get pregnant and also high risk pregnancies. I learned that a pregnancy where the mother has epilepsy is considered high risk. It just means that they need to monitor it more than a "normal pregnancy". I've always known that I would have to change a few of my medications in order to get pregnant so that the baby doesn't have any defects, but this book has given me more insight into what I need to do in order to start that process when the time comes.

Up until this last week, I was terrified at the thought of having epilepsy and getting pregnant. So many woman with epilepsy have perfectly normal babies, but I was nervous that I would not be able to figure out how to navigate around the difficult parts. Luckily, the main doctor I am seeing right now is a fertility specialist and endocrinologist. I know that I will be just fine.

New Possibilities

Hey everyone! It's been so long, I don't know where to begin. A lot has changed and I don't think I will be able to remember it all.

First, I've been seeing a reproductive and fertility endocrinologist. She told my neurologist that she was interested in my case because she deals with hormones and I have Catamenial Epilepsy. Therefore, my seizures occur when I am on my menstrual cycle, when my hormones are out of whack. She has been a huge blessing to me and gives me hope! I tried to go on a birth control called LoEstrin, but that caused more seizures. Too much estrogen. After that, she suggested I try three things, so I am currently taking progesterone (I took that a year or so ago, but by itself it caused more seizures), using a patch called Climara and getting a birth control injection once a month that is called Lupron. So far, things have been okay. I still have seizures, but they rarely come in clusters like they used to. I will have a couple but they aren't in a row. I will tell you, that has been nice. I've been on another anti-seizure medication called Acetazolamide. I think it has helped? Then again, I can't exactly tell what is helping anymore, unless it causes more seizures, then I know it is not working.

About a month ago my best friend whom I live with asked me what I would like her to do when I have a seizure. Now, let me explain. Years ago when we met, she asked the same question. I was particularly insecure about my seizures back then and I told her to just ignore me and continue talking and doing what she was doing. The reason why she recently asked me the same question was because she and I know each other so well now, and she wants to be able to help me if she can. I really appreciated her asking me because that made me realize that times have changed, and it's important to let her know how to help if possible. Luckily she can. If I happen to be having a cluster of seizures that won't seem to stop, I have what I call a "seizure stopper". I take it and it generally stops the seizures fairly quickly. I told her where the pills are, and that if I am having the seizures and not getting the pill myself for some reason, to get it for me. Sometimes when I'm having clusters of seizures I can't seem to accomplish what I am doing. In the past I have gotten up to get a pill but then turned around and sat down on my bed instead. Epilepsy is complicated.

I have a job. Not one in a store, no. I learned from that! In November I was lucky enough to get a job working for a family friend at her at-home business. It's perfect for me, I can work my own hours and since she knows me, she knows my situation. I really enjoy the work I do and I am honestly so grateful to have a source of income. I don't know what I would do without it. I'm lucky enough to have supportive parents who help me with money when I need it, but having any income to me is better than none. It gives independence in a world that prevents that from me.

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.

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.

https://m.youtube.com/watch?v=K4fylIRMA-Q

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.

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.

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!

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!

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."

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.

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.