2026 A year late. Living with high hopes

It was hard and it still is. After finally feeling freedom for the first time and having it torn from you will break you. You had a life long dream came true and then it gets ripped away from you so suddenly. That's what happened to me.

I have gone through a lot in life. Good and bad but that seizure broke me in ways that nothing else ever had. I was more suicidal after that seizure than I ever was. Knowing the brain surgery didn't permanently heal me made me realize I will never be 100% "fixed". It is taking a VERY long time to accept that. I am still working on that. Regardless, I am still going.

I am determined to get things under control and stay positive, Not only do I have endless support and love, I also have a phenomenal counselor and great doctors. It has now been a year, 6 monthes, and 11 days since my last seizure. While I don't believe I will be truly happy again until after I hit that 4 year mark, I will have high hopes for it. 

I don't know if my faith in freedom will return like it was before but I will fight for it. I have been going on a journey to find myself again and get back in the grove I was in before. 

Good luck for everyone and remember, Live for Today, Plan for Tomorrow, And Learn from Yesterday. We've got this!

Day 10 Being Seizure-Free

      As you can tell the Epilepsy and seizures are back. While I have only had 4 seizures since the brain surgery, I am having them again. It is heart breaking that they are happening. Most of them have had some sort of explanation, at least it seems like it to me. However, this last one does not. Until I learned about the PTSD seizures. While mine are originally Epileptical, I believe this last one could have been from PTSD given the time of year it is and some of the trauma I have gone through around now. 

    According to my counselor, I have PTSD rather than depression which I was diagnosed with at a very young age. That is very likely in all honesty. Most of the time I am in a good mood and am a very happy person, however, there are random events or random times of the year when my emotions go out of whack. So it makes a lot more sense for me. Plus, to go along with all of that, my family doctor that originally diagnosed me with depression back in the day, we learned, didn't give a shit about his patients let alone set them up with the right kind of meds. That was also many years ago so we didn't have the technology or knowledge that we have now. I want to believe that it was due to lack of those things but, I do question the passion though.

    Either way the main thing I keep in mind now is that I am having WAY less seizures and only having them at night. They are also less severe. This last one I had, I didn't bite my tongue or rip into my hands with my nails. So all in all, this is still better than it was before. And as long as we can keep them only happening at night while sleeping, I'll be good. 

Day 39 (Would've been year 4)

 Today should've been 4 years seizure free. December 18th, 2021 I had a grand mal seizure. It destroyed me for around 4 days. The damage was bad, bit off part my tongue, my muscles were very sore, destroyed my bed (trust me there was no saving it), and we can't even talk about the finances for the ER visit. Medical costs in America are horrifying. I was in the hospital for 3 days and had many test run on me. I am going to be getting treated for sleep apnea and figuring out the cause. Even though this all seems horrible, there have been positive things that has come from this. 

Not only did I learn about more about my physical and medical issues, I also realized that I am smarter than I give myself credit for. When I got home from the hospital I was in such a deep depression that I actually considered suicide. I haven't done that for years. After 2 days of hell in my head, I just kept thinking and had an epiphany. I sat and thought about what could actually be the cause of my epilepsy. Now, I thought it was the scar tissue but that didn't make complete sense. Then it hit me, why after almost 4 years I have a seizure. 

A piece of information you didn't know about me - I got a Mirena around 4 years ago. I had been on birth control for years to regulate my period. I was on the pill up until I got the brain surgery. After the surgery, I started bleeding and having irregular periods again. We tried resetting the pill and tried different pills but no luck. So I got an IUD (Mirena). It got rid of my periods and helped sooo much with the cramps. Well, it also helped with the epilepsy. 

There is a thing called catamenial epilepsy. It is due to a major hormonal imbalance from heavy periods. And after having my IUD for almost 4 years, it started making sense. They have to be changed every 5 years. I had no idea that my hormones had that big of an impact on my epilepsy. About a month after the seizure, I went to see Dr Alexopoulos, asked him about it and he explained it to me. He said that is part of the reason for it. The other reasons is sleep apnea and weight. Which makes sense. The amount of stress it all puts on my brain is wild. So we now have plans. 

So from this, we have not only learned more of my issues but have a plan to get things fixed. It explains why I have such an issue with weight loss, why I can't sleep, depression, and more. There are many appointments and tests to come but, we got this! 

As far as the brain surgery, I will never regret it. It was worth every minute. I have learned that regardless, I am strong, I am loving, I will be the person I want to be. Still got my tattoo worked on. And this seizure was a reminder of who matters in my life and that I am strong enough to fight it now. The Epilepsy will not win!

Three Years

Day 1,095 (January 26th, 2021)

Before the surgery, I went 2 years seizure free. I was never able to beat that, until now. Seizure free and still going! 

Year 2020 was a handful for everyone. It was overwhelming, emotional, and stressful in every way possible. With COVID so many people were held back. My heart goes out to everyone. 

Somehow though, I wasn't. I wasn't held back because I have finally learned that I can do anything I actually put my mind to. This year, I got a new job, got an even better job, got 4 stores to buy and sell my own merchandise and, started mastering the art of making dice. Yes, for D&D. 

First D20 handmade by Dicey Designer. 

I explored every option that was offered to me. I have been learning who I truly am and what I love. I am able to set goals and achieve them. I am no longer scared to express myself and push myself to new levels. Whenever the time comes, I will lay on my deathbed and be able to say, "yeah I did that." I never thought I would do a fraction of what I have done these last 3 years. And I have met some of the best people doing it! 

I love getting my hair done. I know an amazing woman that can work magic. I love being able to have a new story every time I see her. I love having her surprise me and use me as a canvas. She's great at what she does and I 100% recommend her! Thank you so much, Ashley! (Cost Cutters in Kent, Ohio) 

I love getting tattoos. It's like a diary on my body. The newest one, I'm getting it while I write this, is one for the anniversary of the surgery. This is part of my past. Which is why I have it on my back. This person is amazing at doing their art! And I will continue to visit them for many more pieces. If you want someone with love, care, and an amazing artist, they are it! Thank you Gray, for being outstanding and patient with me! Seize the Day, right? (Kustom Culture in Tallmadge, Ohio) 

I am in one of the strongest relationships that I feel exists on this world. 15 years and counting, I have the best husband anyone could ask for. And a beautiful woman that has changed my life only for the better. Justin and Amanda are perfect to me. Love you both! 

I have gotten closer to my family than I ever have been. Even with all this random shit happening. This includes my direct family and the in-laws. I wouldn't trade them for the world. 

And a final shout out to all my close friends that have made these last few days perfect. You all know who you are! 

I have to admit, if it wasn't for the surgery, I wouldn't be where I am today. I would still be at the shit job I had to start with. I would still try to hide and be worried about everyone's opinions. I wouldn't live life to the fullest. And I wouldn't have gotten the help I needed for my other medical issues (Depression, anxiety, and PTSD) Now, I am a new me, a better me. And NOTHING can hold me back. 

Two Years

 Day 730 (January 26th, 2020)

Two years ago I was terrified and lacked confidence. Today, I know I have more strength than I ever had. Before this surgery I had a phobia I never knew of. I was scared of myself. Growing up with a phobia can make it hard to realize it's there. You learn to live your life around it. I had a phobia of my seizures. No matter what it was, seeing a movie, going to a haunted house, walking alone, going to a job interview, sitting in class, riding in the car at night, I was scared of having a seizure. When I would have a seizure I would bite my tongue violently, claw at my own hands, and try to eat whatever I could get my hands on. Yes, even the non-food items. There were triggers that set the seizures off, flashing lights, over stress, lack of sleep, stressing my body at all. It drove me insane. I was too scared to walk out of my home without someone there. That's what I dealt with for 28 years. Today, I do what I want, when I want, however I want. I get to be independent and reliable for others. I have become more active. I can drive, never thought I'd be able to do that. I work 3 jobs. One of them is me owning and running my own business. I can push myself in ways I never thought I could. I love being busy now and dealing with the stress from that is like nothing to me. I love it. This surgery has changed my life for the good. I am free. I am seizure free.

One Year

 Day 365 (January 26th, 2019)

One year and one day ago, I had my last seizure. I have officially been seizure-free for one whole year. And the best part is that I’m not scared anymore. I know I can make a difference, and I know I can do anything I want to without this massive barrier in my way.

Now, I’m not going to lie: it was a battle. It was hard, but after getting the massive wall down, I will win the war.

I can’t believe this is real. Still no seizures. I can finally make my way to success. In work I have been promoted and trained in multiple fields. I am a cashier at Walmart. I was recognized as "Associate of the Month" today for helping customers the way I do. I now have been moved up to Customer Service, I have been trained in Self Check Out, and I am determined to be moved up to a CSM, or Customer Service Manager. Now that’s a hard field, but I will make it there. They get roughly 10 miles worth of steps in every day. I did that once on an insanely busy day, and I’m not going to lie: that hurt. But I will keep doing it and make my way to where walking that much is manageable. I couldn’t even walk a mile before.

I went on a trip a few months after the surgery and had a hard time walking. It was depressing, and I became determined to make a difference in my life. My goal was to walk a mile without breathing heavily within 5 months. I walked every day that I didn’t work. I would walk a little bit more every time. I set some basic goals for myself. “Go to that next tree.” “Go to the next sign.” “Go to Chipotle.” I made it there and got to eat out, on my own, for the first time. “Go downtown. Now go to Chipotle and downtown.” I managed to make it to 6 miles within that time frame, and I will keep going. The step count at work is easy for me now. I don’t have to come home with my feet killing me to the point where I can’t even comfortably make it to the bedroom. It’s wonderful, and I will keep on going. That is only one thing I have pushed myself to do without fear. It also helps that I have changed my diet to help give me the energy to do the things I want to do. It’s crazy how big of an effect your diet has on you every single day. It’s a lifelong change that I will do forever.

I can also pick up on learning new things faster. With the different positions in work come different situations to learn. I love to learn. So I always ask questions. It comes in handy. I also pick up on new signs that I may not have learned and ask my Deaf friends about it. I have been able to pick up some new hobbies and finally stop being scared of screwing it up or eating something that I am working with. I make jewelry and drill dice to do it, even started selling it online. DiceyDesigner on Etsy if you want to see my work. Nothing like starting a small business of my own! It’s nice to be able to relax while doing laundry and know (well, 95% know) that I won’t suffocate from falling face first into the basket (the daughter of my mom’s friend did that.) While I still don’t care to cook, I’m at least happy that I don’t have to fear burning myself from having a seizure and trying to grab the pot or sticking my hand on the hot stove.

I got my first tattoo ever, and now I’m hooked. I already got another one, and I have one more planned out. I went in, and one of the questions they ask is if you are epileptic. That is a completely understandable reason to deny someone service for that. If they were to have a seizure while getting a tattoo, horrible things could happen. That is a safety risk for the workers just as much as it is for the customers. When I went in for the first time ever, I saw that on the paperwork. I went and spoke with the manager and explained my situation. She was so understanding and believed things would be ok. She said, “Yeah, as long as you truly feel like you won’t have a seizure and have been seizure free for awhile, let’s go for it.” I got my first one done, and I will always go there for the love and support they were willing to give me. I left a very generous tip, and I won’t go anywhere else. The tattoo is a 3-eyed cat with dots around it. It’s a new look on life, and the amount of dots is how many times I got poked with a needle for the surgery itself. This one reminds me every day that I can make it through the pain, I can push myself, I can see the world however I want to see it, and I can make the best out of any situation.

I dyed my hair for the first time ever! My hair is a huge part of me. I am very uncomfortable with my appearance. One of the two things I have been proud of is my hair. I loved my color and how thick it is. I was scared that if I change my color it will ruin my hair. But after the surgery I learned that it will grow back. But who needs it, too? I never got it cut any shorter than my shoulders. Now, I get my head shaved regularly, where the scar is, to show my battle wounds from the surgery. That is part of me. I’m proud of that.

Now, the craziest thing is that I never thought I would do any of this. I thought I would be stuck at home, scared of dieing everyday, nervous that I would screw something up or hurt someone and not even realize it. I thought I couldn’t succeed, but look at me now!

One Year Later (I get my hair cut regularly)

One Year

One Year

Craniotomy

Getting this done was to help with the epilepsy and get rid of the seizures as much as possible. I had to plan about meals ahead and make sure we have stuff ready before the surgery.

I knew things were going to be hard, and that the pain afterward was going to be intense, but I didn’t expect it to happen the way it did.

The surgery went really well, don’t get me wrong. I just know that for some reason, stuff was a little off. PS- I just need to put this down somewhere.

2 days before the surgery- There was tests among tests. It’s already rough being in the hospital for at least 8 hours (not an exaggeration), but having to do that without being able to drive (due to seizures) or easily take care of myself in the process really made the day hard. So all of the tests were hard to handle, and I was given an extra puffer on top of the normal meds I had to take, too, just because I seemed like I was worse off than I normally am. I decided not to look into extra information about the surgery so I didn’t make myself and other friends/family really scared and worked up.

Finally, I made it home and looked into paperwork and other things that needed to be completed, and I gave my husband a big hug. He seemed very positive and excited about all of this. We bought a camera so we can get photos of the surgery because, why not?

I decided to sleep basically until the surgery because we found out that we needed to be there at 5am-ish?

Surgery Times

Day 1- Brother, Mother, and Husband are all coming to be in the hospital for the surgery for me. We park and get ready to head inside with only a couple of bags. We decided we will leave the rest of the bags and belongings in the car since Husband will have to move the car anyway. After the surgery, he will bring our stuff in to the relaxing room that I will be staying in until I get sent home. I will have the surgery, recover for an hour or so, then get put into a room to myself for me and the family, right?

They went ahead and let my mother, brother, and husband visit me (I don’t remember too much because of everything I was taking at the time) but, my husband was allowed to stay with me.

Later that evening- “We still don’t have enough room for you to have your own room for you to heal up, so we have to keep you here. At least until we get a room open for you.”  I was in a tiny area, not even a whole room to myself, trying to recover some how. Don’t get me wrong, the nurses were nice and cared about me. I don’t remember having issues directly with the nurses themselves but, people didn’t know how the hell to organize me to get into a room. When I somewhat became awake and knew what was going on later that night/next morning, I was in so much pain from the bottom of my back. No idea why.

The pain in my head makes sense given the giant cut above my ear for the craniotomy. But the pain in my lower right back, making it hard to sit let alone move, confused the heck out of me. I never expected this at all.

Day 2-

Woke up getting asked so many questions that I don’t know the answer too. I don’t even remember the questions that I was asked again and again. I just remember that I kept getting more meds and that I had a (PEE HELPER)catheter make me constantly feel like I had to pee more. Every couple/few hours I would get asked sometime, I couldn’t answer all the times. Or maybe I could hear the question and just couldn’t think of the work right away. So I would get given more meds. Right after I have meds, I would be so tired right away that I would fall asleep for I don’t know how long. And every time I would start to lay down, everything hurts, whatever the pain was from on my back.

I started to get a little bit of time that I was coming out of the crazy feeling though. I can remember people asking me some stuff and I was answering some questions. I was still in pain and was able to tell them what was happening, even though people thought I was nuts about it. I also realized there is food there and I should eat it. I really didn’t want to. Husband helped encourage me to eat some small stuff that was there but I mostly told him to eat it because I wasn’t going to. My head, mouth, tongue, back, butt, and even my sanity hurt so badly that I didn’t have the stamina needed to eat to survive.

Day 3

More pain and more sleep. Some stuff happen that I can’t remember at the time. I think around then is when I finally got the catheter removed and I learned how to walk a tiny bit.

Day 4

I actually remember some stuff happening. Either my body started getting somewhat used to having all of those meds or I just didn’t take as many as I was on day 1. Either way, my body was in pain and my brain was exastited. I couldn’t remember everything I needed to say all the time and I couldn’t even walk properly to be able to get to the car to go home. Luckily my husband helped me get into the car and get me home. I slept most of the time at home and was still unable to eat. I felt like crap. I was trying to take everything they gave me, even though I didn’t want to- thank you husband for helping me! My head just kept thrawping over and over again. And my back was still so bad that my poor husband had to walk into the bathroom with me. He took really good care of me, have I said that yet?.... All I can honestly remember at this time is that I would sleep, hurt, take pills, and feel sick because I refused to eat enough food for myself.

Day 5-8

I am home and mostly been sleeping, watching some random stuff, taking more pills from my husband and friends. A lot of the time I sleep, hardly eat anything except for one meal here and there. But with all of the help going to the bathroom and laying down I’m finally getting myself back together. I have slowly been learning tiny things on how to walk and wipe myself. One of those days my best friend called the hospital to get better meds to help with weird pains. And stuff slowly got better. VERY slowly but it is progressing.

Day 9-11

I am finally properly writing on here. I remember a lot of stuff that is finally happening and I can actually walk by myself sometimes. A friend of mine took me to the dollar store at some point. These 3 days have been so much better. I am in pain in my head and back but I can at least sit up and feel ok. My head pain is much much lower than it was in the past. Now it’s more of an annoyance than a lot of pain I suppose. And as for my back pain- it’s still sore but, I can handle it now. I can finally go to the restroom on my own for normal stuff and for showering. I can take a quick nap if I need to and I can actually do stuff if I need to. It’s a bit of a hassle to really cook but sometimes I can get away with making something in the microwave. Luckily one of the wonderful people that lives with us does the dishes, and my husband takes care of basics that I mention and ask him to do. Most of the time I can do very simple stuff now, I am so happy about that. I still can’t bend 90 degrees but I have taught myself to bend in easier ways that work from time to time.

In these days I had my first night without someone sleeping with me, and everything went well. I had to switch from the couch to the bed to the couch again but, hey progress is being made now. I slept in bed again and it worked this time. I also had a day where a friend of mine took me outside of the apartment and to a dollar store. Just to get out for a small amount and it was wonderful. My brain is still running a little slow but, it is getting better every day.

I am still moving slow but I am at least moving more. I am healing, I have spoken to some friends and managed to learn how to handle myself a little bit. I’m not taking as many or as crazy pills anymore and have a good schedule that works for me. So I’d say things are going a lot better by now. We have some more tests and doctors visits we have to go to soon but, I’m at least not scared of going to them now. Now that I understand what is happening I feel so much better. I now know what I have to do and know that I can control this, with the help of my wonderful Husband of course. I’m no longer scared to say something about this whole situation.

Day 18

Everyday up until now is around the same, a little bit of a heal and pain depending on what I’m doing. Today was a special day though- removal of the stitches. As dumb as that may seem, I was excited. I’m not going to lie, I was nervous. Let’s start with last night. First of all, I couldn’t sleep right. I had so many emotions going through me along with physical feelings. This is what my brain does in the middle of the night when I’m trying to sleep. Waking up either every 2 hours or 5 minutes all night know, I was tired by the time I needed to wake up. Because it’s time to wake up at 8:15am(but my body says “NO, YOU WILL GET UP AT 8am) and go get my head strings removed…… I’m not your average morning person if you can’t tell. Either way, I was still excited. So, wake up, get dressed, and get to the doctors office. Finally got there and got into the room, she comes in and says hello. People are amazed with the giant cut that looks like a “?” and I say thanks. She started removing the stitches and it hurt at first but just for the area that is around mu ear. After that, I couldn’t feel a thing while she was removing the rest and it felt GREAT when it was done. It took us about 5 minutes, if that, to get the stitches removed and it was amazing. These 5 minutes were wonderful, ok…. My head has already started feeling better just from getting those stitches removed and I love it.

I just wanted to let everyone know, this is about all that will be written about. I still have some speech therapy that I have to go to but, I am getting better with my talking. Everyday, I remember more words and then learn there are other words I have to focus on. Sometimes I stop and think, but I am remembering most of my words quickly. Sometimes my friends will finish sentences or fill in blanks for me to get the right words, but everyone is good about the issue. I think words and thoughts are coming back a little more every day, and my brain is coming back to the way it used to be. I’m starting to get comfortable with people again, and I am getting back to the old me, out in public and in general. I’ve learned that I like new things to eat and like old things, too. I also learned that my American Sign Language is still well-known (I got my Bachelor’s Degree a few years ago) and useful, and I can still do the simple things like making a puzzle. And the best thing about all of this is, I haven’t had a seizure yet!

A special thanks to:

My Epileptologist. You are seriously the most intelligent person in your field that I have ever met. And you have great resources.You’re my savior!

My Neurosurgeon and the others helping out. You are amazing with your hands and I will keep those photos forever.

My friends that have taken care of me and have pushed me through it all. You guys are truly inspirational and encouraging.

My Mom and Brother. You guys are who I needed and who I know, naturally, will always be there for me. Love you!

And my Husband. Thank you for everything. If it weren’t for you, I wouldn’t be able to walk, talk, and even be myself. You are the happiness in my smiles, the love in my heart, the support I need every single day. I love you, forever and always!

WARNING!!!!! Some photos are very graphic! Look at your own risk!

Scan After Surgery

Scan Before Surgery

First Day Home

Stitches Removed

Slow Healing Process

Surgery Team

Surgery Team

Scar Tissue

Skull Piece

Scar Tissue

My Head During Surgery