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.