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.