Status Epilepticus in June

This previous June, one of my worst nightmares came true, which was ending up in the Emergency Room because of status epilepticus.

Ever since I started having seizures back in 2009, I never had to worry about status epilepticus because as the seizures turned into seizure clusters (simple-partial seizures), I was prescribed a medication (a pill) to stop them, just in case, which I called my "seizure stopper." When I started seeing my current neurologist a couple of years ago, he told me he did not like that medication and instead prescribed me a nasal spray, Valtoco (diazepam), which takes effect almost immediately, plus you can use them during grand mal seizures since you don't have to swallow anything. I have been incredibly grateful for it because I have always had them on hand when I needed them, and when I use one, I am in awe of their "magic." Ask my mom. I always say, "Whoever invented these..." followed by me wishing I could hug that person or people. Yeah, I get weird whenever I come out of a seizure.

Well, as I said, this all changed in June. I had run out of the nasal sprays and was unable to refill them for a few more days. I called my pharmacist to see if he would be able to contact Medicaid and ask if they could approve it just a little earlier because that had happened with another medication in the past, and he said he probably would be able to push it through in a couple of days. He felt quite bad when I told him that I needed it and that I did not want to risk going to the ER in case I had a seizure cluster that would not stop, but he couldn't do anything about it. The only option would be to pay over $2,000 out of pocket, and as my parents would be the ones paying, that was a predicament. I tried to put it out of my mind, but of course, the following day...

I started having some seizures around noon. They were on and off, so I didn't think much of it, but they were not stopping, and my VNS magnet was not stopping them either. I probably should have done this earlier, but by seven in the evening, I was in a foggy state of mind and went to tell my mom. I asked if we should go to the ER and she said to wait a few minutes and see if they would stop, but I was doubtful. By that point I knew it needed to be then, so I said so and I went to get dressed since I was in my PJs. Unfortunately as I was attempting to do so, I started feeling even worse and did something I had never done during a seizure: Prance back and forth. Normally that would be funny, but it was not in this situation. I tried calling for my mom, but could not seem to yell very loud, and I felt like crying. Eventually she heard me and I told her what was going on and how I couldn't get dressed. She told me it was fine, to go in my PJs (which usually happens), and off to the hospital we went.

We walked into the ER and I told the guy at the counter what was happening, that I had epilepsy and the seizures were not stopping. He printed out a bracelet and put it on my wrist, then I went to sit down. There was a man in the waiting area and I knew he was staring at me, but at that point I didn't care. Luckily I didn't have to wait long anyway, and they called me back. Immediately I was hooked up to an IV and they were hooking up some wires and such because apparently they wanted to do some tests. However, they decided it wasn't needed since they learned I already had epilepsy. I tried to tell the doctor and nurses what was going on, but my mom had to fill them in because I could barely think, let alone talk. I was given diazepam, which is the same as the nasal spray, and the seizures stopped shortly after. I had a throbbing headache, so I was given a medication or two which made me feel wonderful. My mom recorded me, as I could not stop laughing, which was funny. One of the nurses apologized for the uncomfortable bed and I told her in my wonderful state of mind that it wasn't uncomfortable at all! She told me, "Yes it is, you're just on drugs." Touché.

In previous ER visits, which have been more than I would like, they have always been the "treat you and get out as quickly as possible so we can use your bed for someone else" people. This time, however, they let me stay as long as I needed to, and I did not feel at all pressured. I was able to leave when I felt I was ready.

What was frustrating, though, was that I had been told by my pharmacist that he would be able to push the medication through and that it would be ready the following day. I told the ER doctor that that was the case, and he said I should be fine until then because the drug would be in my system for a while, which made me feel better. Of course when I called the pharmacy the next day, because I had not yet been contacted, the medication was not ready, and he had failed to let me know that he was unable to push it through early. That meant the only option, besides paying over $2,000, was to see if my primary care doctor could give me something, as my neurologist was not open for a few more days.

At the doctor I had a few seizures while in the waiting room with my dad, and I was worried I would have to skip the appointment and go back to the hospital. Luckily I didn't, and the doctor sent in a prescription for some pills that would last for a while.

I really dislike my current neurologist and am in the process of getting a new one. When I saw him that Monday, I asked if it would be possible to have some of those pills on hand in case I ran out of the nasal spray again, and he said he did not like the pills, so basically... no. The only thing he did was up the dosage of one of my medications, because apparently I still had some room, and he turned up the settings on my VNS. When I got home I was freaked out that I would end up in the ER again, and that did not go away for a while.

It has been a few months now, and I haven't had to go back. In fact, my lame neurologist did something helpful for once by turning up the VNS settings and upping that dosage. You would think he would have upped it a long time ago instead of constantly telling me "there is nothing I can do for you," but you can't have everything you want, right?

Of course I still have seizures, but until the other day, they weren't to the point that I needed to use a spray. The reason I had to use it was because I was stupid and didn't trust my gut when I was on a walk which said I needed to go home, and that resulted in too much exertion. I have learned, though, that it doesn't matter if I am playing Pikmin Bloom on my phone and need more steps, I need to go home when my body says to.

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