Radioactive

I made these videos on the 29th, sorry I've been slow. I had my consultation already and I'll try to post the results of how that went. I'm not the happiest, but I'm going to still try to be hopeful. So let's get to the post I had planned for the 29th. Let me give you some info on the radioactive isotope.

It's also called a SPECT scan. This radioactive isotope gets injected while you are in a seizure. After you get injected, they take you down for an MRI, then the next day you go down for another MRI. The SPECT MRI shows hot spots in your brain. Then, they compare your regular MRI to the SPECT MRI to see if there's a place that is more focal then another.

Brain Spect

Warning: You're about to see a seizure

Warning: I'm going to show you another seizure

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So...You're Telling Me I'm Crazy?

In 2016, I received a letter that Dr. Barken was moving to another state to continue her practice. Are you keeping track? We're about to reach doctor number six. I met Dr. Borlot during one of my VNS appointments. I felt he was competent and very educated as an Epileptologist. I requested him as my new Epileptologist. Our first official appointment was in May of 2017. He spent a lot of time answering questions and concerns He had earned my trust in him as my doctor. 

I was going to have another VEEG monitoring, my fourth. The appointment and all appointments prior to him listed a bilateral frontal diagnosis. The goal was to try and figure out a better way to treat my epilepsy and perhaps find a focal location to have the brain surgery to remove it. We never discussed the RNS device. This seemed to be the end of the road for me. 

He did need me to have a grand mal of course. It was the day before I would be admitted, and they had me staying at one of their hotels. The day I arrived, I called my old Priest, Father Andrew. He was there for us also during Nana's last rights and funeral. He is at the top of our family's list for people we trust. I asked if he could meet me and my mom at the hotel and give me a blessing to have a seizure during my VEEG. Father Andrew was a bit confused, "You want a blessing to HAVE a seizure?" Well the good man he is, he gave me that blessing.

I did some drinking that night at a little diner outside the hotel. I drank some energy drinks that are bad news for seizures. Once I was admitted into the hospital, my clusters started. I pushed the button like I was supposed to, to mark my absence seizures. Borlot would come in the next day and let me know there was nothing on the EEG. The absence seizures were getting stronger and longer the next day. I would mark them, and had to so often that the EEG techs told me that after marking an absence seizure seven times, they would come in and check on me.

Borlot came in the following morning and said there was nothing showing on the EEG. I was so frustrated and so angry. It didn't make sense that what I was seeing looked exactly what Dr. Barken had seen to put this VNS in my chest. Alyssa came up to the hospital to work on her finals for her bachelors. She's a very book smart girl. She finished her degree within four years like most people typically do. She planned to keep me up for 24 hours. I kept up with her, only because she made sure I did.

The next morning I was on the phone with Joel, and it happened. I had my grand mal. I was so relieved! I thought for sure we would have some answers. We got them.

Dr. Borlot agreed that I had grand mal seizures. He talked about pseudoseizures.

What the hell is that? Let me summarize it as well as he did. There were all these medical terms, then the big point, it was just all in my head. Yes, 25 years of treatments and diagnosis and he had made the ultimate discovery! It was all in my head!! No shit it's in my head that's where the flipping problem is.  Oh wait, you're not saying that I just have an issue in my head like epilepsy?

No, he was telling me that my absence seizures were not seizures at all. That I only had grand mal seizures and now they were going to be generalized. WTF just happened?? So now I'm just crazy and all of these seizures that have effected the majority of my life and every doctor in the last 25 years was wrong? 

Let me tell you how this doctor, patient relationship ended. With a big mother effing peace out!! Dr. Constantino I'm on my way back to you!!

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Here's Your New ID

I forgot to mention, I can no longer drive. Haven't been able to since 2015. It was my most difficult thing to give up. I had been driving for 20 years, and that was my biggest source of independence. I wasn't going down without a fight though. I would try to make situations difficult for Joel to get me to an appointment so that I could drop him off at work and then drive to them myself. Then, I would have the rest of the day to use it and I would have to go pick him up.

Was it irresponsible? Was it dangerous to others? Yes. It was the biggest drug I had, more addicting than any of my medications. There were a lot. I couldn't let it go, I couldn't handle the withdraw of driving. It's a real thing.


In 2017, my license expired. Yes that one. My actual DRIVER'S LICENSE. You know, the one that gave me the right to drive?? The right to drive as long as I wasn't busted for a suspended license. There wasn't a doctor in the world that would sign me off to drive anymore. Damn. If there was ever a photo I wish I could have kept on my license it's that one!




Since I was 16, I never smiled in a driver's license picture. This one, it just read pissed off bitch. I was finally losing my right to any independence. When you're under the age of 18 your driver's license is vertical. That 16 year old me could drive though. Totally hate her. I went in to get my Identification Card. Otherwise known as the no right to drive card. I already hate going to the DMV, but it was about to give me the ultimate defeat. It was official, my driving days were done.

Joel's hope out of this RNS surgery is for me to start driving again. He hates driving, I love it and was one of the best drivers I knew. what sick irony. I was more enthused about having kids, but sure we can make driving the biggest celebration.

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Like My New Watch??

Everyone was worried about me all of the time. Joel would call me on each of his breaks to make sure I was alive. My mom would text me until Joel was home to make sure I was okay. It was exhausting for everyone. I wasn't allowed to shower without someone being home. I was lucky to be able to eat, among other restrictions. I was trapped in my own home.

One of the things I learned after the VNS implant was this thing called SUDEP. It sounded like a disease. So I asked what the hell that was. It stands for Sudden Unexpected Death in an Epileptic Person. AWESOME! I was better off not knowing about this. Let's add paranoia to the package. I was afraid to go to bed or take a nap. 

Every year approximately 600 people die from SUDEP. Yep, 600 out of about 3 million people who have seizures. I know, the odds sound rare. Those numbers give each of us a 2% chance of falling victim to SUDEP. Yes, it's low but anyone can be in that 2%.

My mom did some research to help all of us worry a bit less. She found the Danny Did Foundation. This foundation was started by the Stanton family in Chicago. They're goal is to provide more awareness after their son passed away from SUDEP. Absolutely heartbreaking! This family took their tragedy and began to help others.

Boy, did they help me! I received this snazzy SmartWatch from the Danny Did Foundation. Since I'm poor, they generously approved a grant for my watch and subscription. They asked me to take some pictures with my Smart-Monitor watch since I was a recipient. I was more than happy to.

Here's how my Smart-Monitor watch works. It's like a fit bit combined with a seizure alert. There are adjustable settings for duration and sensitivity. You can change it to fit your seizures. For example, if I set mine to go off after six minutes of an abnormal motion, then it will send a text notification to my eight contacts.

It also will give my location in the text. If I don't push the button to cancel the abnormal motion, then my mom gets an automatic call and if I'm not responsive, she calls 911.

I was able to have some independence back. I showered. I cut food. I went for walks. I rode my bike. It gave my loved ones peace of mind. That was the most important thing. I could only handle so many texts and calls in a day asking if I was alive or okay. I wanted to be able to chat about other things you know?

How about my watch accessories?? My mom's cousin DeDe (so my cousin) is a fabulous photographer and makes these awesome bracelets!

My lava stone is to make me grounded, calm, and stable. God knows I need those. The turquoise opens communication and gives a sense of wisdom when making decisions. She's so thoughtful and knows what this soul needs! Thank you DeDe! 💗

The Danny Did Foundation, really helped save my sanity. I hated feeling like a toddler. A life time of gratitude to the Stanton's and the foundation team. My mom makes donations as she can from the both of us. She's also made crochet items for their auctions to raise money for the foundation. If you can, donate. It's a very epilepsy necessary foundation. If you think you'd benefit from any of those devices they have, shoot them an email! They're such kind people. 

Thank you Mom and the Danny Did Foundation!

Epilepsy Society--SUDEP

Danny Did Foundation

Smart-Monitor

DeDe's Bracelets

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Pepper

April 2016, I had a new baby. Pepper. Peppers, the Baby, Mama's good girl. She was exactly what I needed. Our plan was to train her to be my service dog. I bought some books to try and start training her. Problem was she knew she was the baby and she started believing that she was a human baby instead.

I tried the beginning stages. She would look up at me with her cute little face and wanted mom to hold her. She would wrap her little paws around my legs and neck like an infant. It was the cutest thing ever. I had to rock her too when she was nervous. Joel thought it was ridiculous.


I had to focus on training her to go potty and stay in the yard. Training was a great way to stay busy instead of just sitting around and being depressed. She gave so much happiness. She still does. She's mommy's baby.


It had been a while since my last grand mal seizure. In the book it said that when you have an absence seizure to swab your mouth and then stick the q-tip in a baggie. I did that. She would smell it and then walk away. The personality on her is unreal, she's so damn smart. She'll let you know when she's interested in something and when she wants to participate.

Joel was home and we were working on some of her training. I laid on the floor acting like I would during a grand mal seizure. She paid attention, she came over, licked my face and was on her way. Excellent service dog.

She isn't, not even close. She does take care of her mom though. Unless she walks in front of you while you're walking and completely eat shit on the road. I was just trying to miss stepping on her. She gives kisses every time we walk by where mom got hurt though.


There was a time at our old house, when her and I were just watching some TV. I had an absence seizure, a pretty long one. Then she hopped up and licked my face. I was hopeful that she would turn into a service dog. She just turned into a bigger baby. I love that baby so much. She saved her mom too just by having her with me. I mean, I am the one who's home with her, yet when DADDY comes home it's all about him. When she gets in trouble, who does she run to? Her mommy :)

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Menthols And Boone's Farm

My mom said that the Take Me To Church post was deep. Well this one gets dark. If it's too much for you, I completely understand. I'm going to talk about the very scary thoughts and actions that your mind may spiral to.

People don't realize how the side effects of  medications and epilepsy can slowly start changing your perspective and train of thought. If you're struggling with similar issues, I hope this story will encourage those to reach out for help. I'm one of the most stubborn and prideful people I know. I needed the help and I got it. I'll give you some resources at the end.

I'm in no way condoning my actions, in fact, they were very selfish and impulsive. But, some of them were what I needed at that time. It doesn't make it right though, I hurt people that I love.

Let's go back to February 2016. Joel works ten hour days and I stay home on disability. It gives someone a lot of time to think. I would get the cleaning done, decide what to make for dinner, and watch a movie or something. That was my day. After we lost Nana, it seemed like I had too much time to think. Everything I did was so draining. There were days I was emotionally sensitive and days I was just numb.

I was already an impulsive person. I was still on Zoloft, Onfi, and other shit. Anti-depressants, in the past have caused me to be more impulsive. I was just slowly rolling deeper into my own mental state.


I was crying at any given time, day or night. I would sit on the couch and have some out of body experience. I was back at the cemetery looking at the casket over the hole she would be placed in. Looking down that hole to try and see Grandpa's. Then I would be back on my couch with tears rolling down. Joel had been trying to snap me out of it. I'd get our plates and head to the kitchen and cry over the dishes. This went on for months.

We would get into some arguments as couples do. I just didn't care what he was upset about. Then there were the very bad times. I had so many downers and my tolerance was so high that it would put an average person into a comma.

I was sick of it. All of it. The seizures. The pills. How I felt from the pill. The emptiness. The lack of purpose. Feeling like a burden. The arguments. The doctor appointments. My VNS not working. Feeling hopeless. It was a pretty endless list.

We would argue, I would cry, we'd yell, he'd go to bed, and I'd go sleep on the couch. I would look around in our house. It was just silent. In those moments, there wasn't anything to keep me here. I wanted to see Nana and Grandpa.

I'd get in my pharmacy. I'd take out my drowsy ones. Took way more than prescribed and just popped them. I'd go lay back on the couch, close my eyes, and just wait.

Then, I realized what the the F**K I was doing. I had a flash of all my family and friends at my funeral. I jumped up from the couch and started chugging water. Refill. Chug. Refill. Chug. Refill. Chug. Sleep. Wake up. Deep breath. Said, "Thank you" over and over, followed by, "I'm so sorry."

I did this twice. I was letting the meds take over. My twisted way of thinking would just take hold.


My nose surgery gave me some much needed distraction. The pain and pain meds brought me out of it a little. Once I was healed up, I had to figure out how to get out of this slump. I went back to smoking herb. I was using it probably four days a week. No it's not a gateway drug, sorry. Pills are closer to a gateway drug.

I needed to add something. I started drinking. I had drank quite a bit in my college days. I hadn't drank in a very long time. Especially not on so many pills and having so many more seizures. I didn't care though. I needed to feel care free.

I couldn't handle shots anymore, it had just been too long to start that up again. I was a fan of Boone's Farm. I'd go down to the gas station, get a few of those bottles, and whatever bitch beer I felt like. Then I'd drink them with Joel. He didn't like that I was drinking, but he wasn't going to be able to stop me.

I needed something during the day to relax me a little. I started smoking menthol's. I started out slow. Maybe a pack a week. Then a pack every few days. A full pack when I was drinking.Then, I was just chain smoking.

I stopped drinking and smoking about four months later. Keaton had come outside while I was smoking on the porch. I was having a grand mal. He had to see it. That was it for me.

I went to a psychiatrist, very different than a psychologist. My psychiatrist, Dr. Hazle, really did save me. I was able to vomit all of my thoughts. He was very kind and never made me feel crazy.

He was very empathetic to my epilepsy and recent loss. He also helped me understand that I had been suffering from traumatic brain injury, concussions, and PTSD for many years.

Turns out that people with epilepsy are recommended to get a psychiatrist or cognitive behavioral therapist, because of the trauma and medications. If you do not have either one of these, get one!!! No joke. It was a breath of fresh air!

If you or someone you know are having thoughts that need to be addressed NOW, please look at these sites and get immediate help. You're not alone I promise. Then see your doctor for something more long term. 

Suicide prevention lifeline

American Foundation for Suicide Prevention

Here's some more information on how depression and mood are effected by epilepsy. 

In-depth cognitive behavioral therapy

Psychiatric disorders associated with epilepsy

Epilepsy and depression connection

Epilepsy foundation mood and epilepsy

Links between epilepsy and mood 

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A Nose Is A Nose

Or is it?? Not if your nose was broken at fourteen without your knowledge. June 2016, I was having some serious allergy issues. I went to the ear, nose, and throat doctor. Dr. Bennion. He's one of my favorite doctors too. 

I went in to discuss my allergies, nothing was working for me. My medications and the VNS were making it difficult to breath. As soon as he sat down he said, "You have a fracture line down your nose." All I could say was, "Really?" Remember the post of the seizure where I face planted into the table? It was from that.

We started discussing the procedure. Now, I thought that nose surgery just meant nose surgery. I was really excited to finally get the nose I was always supposed to have!! YESSSSS!!!

Wait, we're not changing the physical appearance of my nose?? Medicaid doesn't cover that?? We're just making my jacked up nose straight? The rest will still be jacked up? Can we just shave the sides of my bridge and trim the end of my nose??????

June 29th, Joel drove me down to the hospital for my surgery. We had to be there around 6 am. My surgery didn't happen until 8 am. Joel was so tired, I was too but I was going to be having a pretty long nap soon. He said he was going to go home and just get another hour of sleep. The nurses told him they would call when I was coming out from anesthesia. As he was walking out the door, he turned around and jokingly said, "Don't die on me."

The shocked look on the nurses' faces...classic! I looked at them and said, "He's just kidding, that's how we talk to each other." They still seemed concerned. Like they were about to bring in Social Services. Damn are we the only relationship with highly sarcastic tones? 

The anesthesiologist came in. We went over the usual questions and explanation. He told me that when I come out of anesthesia, he would be pulling the tube out of my throat that sucks up the blood. He also said that I might be conscious when he does that and not to panic. Um, excuse me but if I am conscious as someone pulls a tube out of my throat, I'm going to karate chop you in the jugular.

Fortunately, he didn't get hit that day. I wasn't conscious. I was being rolled back to the recovery room, Joel was there. Him and the nurses had this very concerned expression on their faces. Joel said to me, "I was just joking when I said not to die on me!" I looked at him all doped up said, "What the hell are you talking about? I'm alive." Apparently, my color was giving mixed signals. Joel was telling me that they might have over drugged me. Whatever, I was feeling great. 

The nurses didn't leave the room. At all. If one did have to leave, another stayed. I didn't know what the fuh the big deal was. I heard some mumbling and then, "We may want to get her on morphine." WTF!!! Was I dying for real???? I said hell no to the morphine. Given the situation with Nana, I related morphine to keeping a person comfortable while passing away. Hell NO! 

I was so drugged on whatever was in that magic concoction of anesthesia, I just wanted to sleep. Joel was right at the end of my bed and kept tickling my feet as soon as I'd close my eyes. I was SO pissed. I looked at him, well half way looked at him, and said, "Leave my ffffeet allllloooonnneee. I jusss wahnnna sllll" and....I'm asleep. We did this for about two hours. He would tickle my feet, I would get mad and try to talk. Finally, he said, "The nurses need you to stay awake, you stop breathing when you close your eyes. They're a little freaked out."

Irrelevant!! I wanted to close my damn eyes. I felt I was breathing just fine so let me sleep! 

Then, I got a horrible taste in my mouth. I popped up from my near comma and started gagging. I was reaching out with the 'give me something' gesture. They gave me this miniature shopping bag looking thing. Then it happened. The sickest shit I've ever felt. Pure blood up the esophagus, into the miniature bag. Filled that baby right up. Ya I know it's sick, I was there! I lived it!

Joel does not do well with blood. At all. So he had to keep looking away while making sure I wasn't missing the bag. I was able to leave at about 3 pm. I thought the fun was over for sure. No one can puke up that much blood more than once and live.

Boy was I wrong. It was awful. My nose became beautifully straightened, but still not the nose I felt was owed to me. 

I looked like I had been standing between Mike Tyson and Evander Holyfield, but dodged the whole ear cannibalism thing. I mean, holy shit look at my face! HA HA!

Not so funny, I had to be set up with in home oxygen from the surgery and my lack of breathing at night from the meds. Jesus, just put me in a home already.

Oh ya my allergies. Well, I wasn't allergic to any food. Not surprising, I'm Italian. I am allergic to basically everything in the air! So, I started getting injections. That sucked too. Not as bad as using an EpiPen on yourself for the first time. 

Fun story time! I had some herbal essence earlier. Joel and I went to his dad's and Joel's best friend was there. That fool had no shirt on and was bit pretty damn bad. I was on a different level, I didn't notice the mosquitoes colonizing on my body. When we got home, Joel had fallen asleep with Keaton upstairs. 

I was digging into my skin just itching and itching. I grabbed my emergency EpiPen. My first mistake was looking at the needle. My second mistake was pulling the pen out before the medicine went in because it freaked me out. I had to wake Joel up. I made him hold my hand. I can let others stab me but I just can't stab myself! I finally did it, I was so proud. The bites were so bad though, I had to do it again, later in the day. I was just stabbing myself that day.

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Don't Cry

Okay, the goal is not to cry while writing this one. It's still pretty fresh and I'm still pretty tender. You, however, cry that river of tears! Everyone needs a good cry now and then. This might help you to let it all out!


I had this strange feeling. Like Nana needed to know that Joel and I would get married sooner than later. I bet you thought we were married huh? We're in this almost a decade, might as well be? So, I ordered this CZ ring that was very pretty. Nana let me try on her wedding ring a few times, I love that ring. It arrived. It was still very pretty. I did a video call to Nana and Aunt Maine. I told Nana that Joel and I were engaged. No he didn't ask. Nana was so happy for the news! I actually wish I would have kept her waiting.

I still was having 100+ absence seizures a day. So, I started to experiment with the CBD oils and I was smoking dope too. This wasn't my first time, but the way it worked with my brain was different now. My hope was that it would keep my absence seizures down. Which it did, when I was high. When I would come down, they escalated very quickly. Which meant, in order for my absence seizures to be maintained, I would have to be using herb all the time. That's not a cheap treatment and not good on the lungs I'm sure. I cared at that time.

February 2016, just before Valentine's Day, Joel gave me a real ring. With a real marry me someday. It was the kind of proposal that fit us. We had been together for this long that some giant gesture wasn't necessary. I was so excited though. We took it in to get sized for my bony finger. This lady brings out this perfectly matched band that they would be merged with my ring. I had to. Joel said, "So you just turned your ring into a wedding ring?" YUP!


I couldn't wait to tell the family and show them, especially Nana. Valentine's day, I get a call from my mom. Her and my dad were at Maine's. I thought they were just there visiting. Then I could hear it. The sniffles and the quiver in her voice. Then my dad got on the phone. I told him I wanted to say hi to Nana. He put the phone on speaker and I talked to her like I would any other call. I asked my dad if she said anything, I couldn't hear her. He got choked up and simply said no. I looked at Joel and just poured out tears. I told my mom I needed to call her back. Joel just held me.

She was still alive she had stopped eating and drinking and it was only a matter of days. I don't know how he understood what I was saying, I had tears mixed with snot. He told me I needed to go down there right now. I felt so bad because it was Valentine's, but I needed to be there.

My mom drove up to get me. The whole time waiting for her, I kept pacing back and forth saying,"I'm not ready for this, I can't do this." I said it over and over again. I wasn't going to be able to keep my shit together sober. I had to get very very very high. I did. That, plus my Xanax were keeping me at a numb level. One that kept me from breaking down on the floor as soon as I got there.

I just knelt by her. The tears were streaming but I was silent. Maine asked if I wanted to paint Nana's nails. I knew it was going to be the last time I would get to. I did something awful though as I was painting. Something I can't forgive myself for. I kept saying in my head, "Nana wake up! Open your eyes and look at me! Say something! Anything!" I was angry and I had no right to be. She was on morphine just to be comfortable while waiting for the right time to let go, and I was mad.

The next day, I called the Priest I had growing up. He was Nana's favorite too. He was kind of another member of the family. I left a message to call me back it was urgent. I knew Nana was going to need her last rights. I didn't want to accept that, but I was grown up now and wanted to be more helpful than a mess. I thought my dad would be mad, but when I got to Maine's he was looking up Father Andrew's number too. Maine asked if we would go find a dress for Nana. It was just motions. Asked to do something, go get it done. My mom, my cousin Georgia, and I found a Nana dress. On the way back Maine called that Nana's breathing was getting slower and deeper.


I called Father Andrew again, told him we needed her last rights, that she was just barely hanging on. He got there shortly after we had pulled in. He gave her last rights. Suddenly a room of silence turned into heavy crying all at once. Maine's hand had not left Nana's. Not even when I was painting her nails. Maine just switched hands when I was done with one of them.

Later, the current Priest at the church I grew up in arrived. He was going to give her last rights. He didn't know that she had already had them. But Nana is so special that she gets two last rights.We couldn't even cry this time we were cried out. My cousin Autumn hadn't been there earlier and was the only one crying. We explained to her after he left, that this was the second time. She was so relieved she thought the whole family was suddenly heartless.

I couldn't sleep. I had to take a sleeping pill just to get tired. Before I did that though, I looked out the window of my parents' room where I was staying. With all the strength I had left and all the love in my heart, I said in a whisper, "It's okay Nan, we'll be okay, you can let go now."

The next morning, I was looking out the window again when Justice came in the room crying. I knew, I honestly knew that night after I said it. I truly believed in something again, it was different but it was real. She gave faith back to me at that moment.

Side note-Right now, I'm listening to the 90s and Celine Dion's Because You Loved Me is on. Not a coincidence. Now is going to make it even harder to finish this.

Back to the story. Justice came up to me and grabbed onto me bawling. At that moment, I knew my role this time wasn't to breakdown like a kid again, but to hold my siblings that were breaking down. I let them know it was okay and she wasn't going to be hurting anymore. It was February 16, 2016. Nana was 94.

My dad and I wrote the obituary, met at the funeral home with my Aunts and Uncles, then I went back home later that night. I wrote my eulogy on behalf of the grand-kids. I knew what they needed from me. They needed my sense of humor.

Before I could give my eulogy, we had to say goodbye before they closed the casket. The engagement ring I had shown Nana, I wanted it to stay with her. So it did, it was on her finger before it was closed. I gave my eulogy. I didn't have an absence seizure during the eulogy or the burial. Before and after that they were still there 100+

It all hit me at the cemetery. Like a brick. I lost it. My mind, my strength to stand, and every tear I had. Everything in those few days just broke at once. Joel was holding me up the best he could. He wasn't going to be able to hold me up for the depression that would follow. My reaction to Grandpa's death was nothing like what was coming.

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Take Me To Church

I have to get into this before the next post. I really don't want to but it will make more sense. Like most Italians, I was born Catholic. Fellow Catholic? Peace be with you, and also with you! Non Catholic? Peace be with you too!

I believed it all, I loved going to church, and I loved being Catholic. I was a good little Catholic girl. I participated in everything I could and it made me very happy. Praise Jesus!

After Grandpa died, something changed in me. Yes, I was depressed. Very depressed. That turned to anger and I needed a sign. I still believed in God, but my prayers were very different. They became long angry conversations. I just started going through the motions of what I used to do and I wasn't participating in the things I used to love.


The big finale was coming up. Confirmation. After that, I was ready to just silently rebel. I didn't tell Nana, but she could tell I wasn't the way I used to be in church. Nana was a devout Catholic, I couldn't break her heart. So, I kept going to church.

I stopped getting communion. Once it became more difficult for Nana to physically go to church, I went less. The priest would go to Nana's for her communion and she would watch mass on TV. That's when I started going to church only a few times a month. I was hoping to see my crush more than anything

I went to college. I didn't go to church at all. I still considered myself to be Catholic when asked but, I wasn't acting like one by any means. Then I decided I was an Atheist. It just didn't make sense. None of it. Plus, with all the bull shit going on, I kept asking why. Why me? Why this? Why? Why? WHY? I wasn't getting any answers. I was just lost and buried in sadness.

Then, I really started thinking deeper. How did this whole concept even make sense? We just float our way to heaven and we are reunited with family in some fluffy kingdom? It started driving me nuts. So I stopped trying to make sense of everything and went on to believe something more realistic. Like my body just decomposing into the Earth and coming back as a tree.

During a semester, I took a Religious Studies course. It covered the evolution of religions throughout the world. A lot of them made way more sense than what I was raised on. I was really into the thought of reincarnation. I wasn't going to keep changing the name of my religious association. I thought that was stupid.

Eventually, when asked what religion I was part of (which is really nobodies damn business), my answer was Non-Denominational Christian. ND Christian? NDC? There needs to be a shorter term. You have to take a deep breath before saying it and that is just to  damn long. My dad was very disappointed. It wasn't like I didn't believe in a higher power anymore, I got back to that place. He should have celebrated!


Alyssa decided in college that she was also Non-Denominational Christian. My dad said, "I'm getting sick of my kids going to college and becoming this Non-Denominational shit!" Then added, "And getting TATTOOS!" Eyes on me. I had already been warned that if another one of his kids got a tattoo he was going to kick my ass. Then I took Alyssa to get hers. HA! Ass not kicked.

Focus! I no longer believed that I had to go to church in order for God to love me. I could believe what I wanted to, where I wanted to. There were so many things in my life that couldn't just be a coincidence anymore. I needed to believe in something to get through everything that had happened and was going to happen. I felt like someone was watching over me. I knew who it was. The next post you'll see who reinforced that in a big way.

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A Finger For Dinner?

January 2016. I just had another VNS follow up. I was having problems breathing at night from the VNS so Dr. Combie didn't increase it at all. My other medications stayed the same as well, except for Onfi. Now it would be 25 mg in the morning and 20 mg at night.

Something was very wrong with how I was feeling. I stayed on the bed until Joel got home. I hurried to him and for the first time I told him, "My magnet is on the left side of my pants if anything happens." Screw the "How was your day honey?' let's go with "Hey, I'm probably going to seize." Poor guy.

We sat on the couch for dinner to watch a movie. Ten minutes later, I was taking a bite of my sweet potato. Why is Joel on the phone and I'm on the floor? Who is he talking to?? What about me going to my parents?????

I did it again. I gave him fair warning! God damn it he's about to break up with me! Shit, I'm hyperventilating! EFF why does my tongue hurt so bad???


He didn't break up with me. I almost bit his finger off though. I went into my grand mal just after I put that sweet potato bite in and pulled out the fork. I didn't get to enjoy my sweet potato!! Joel got me on the ground, on my left side. Now standard seizure response is, don't put anything in their mouth.

Something was already in there though. Joel didn't have much choice. I suffocate and he loses me, or he potentially loses a finger. Tough decision. He got the sweet potato out of my mouth. In the process of him losing some skin off his finger, I bit the hell out of my tongue.

He was able to try the magnet with my VNS while I was seizing. It didn't really have that much of an impact.
He saved me. Again.

Look how weird my tongue bruised. Yuck! It's like I ate a popsicle on one side of my tongue. So weird. I was talking pretty funny for about a week. I had to ice that baby for several days.

My taste buds still work. Joel is no longer a fan of sweet potatoes.

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Raptor Attack!

November 2015, I just had my VNS follow up appointment. Dr. Combie had increased the strength and frequency of the VNS. I was on 25 mg of Onfi twice a day, 50 mg of Zoloft, 1 mg of Ativan every eight hours, 50 mg of Tramadol every six hours, and 10 mg of cyclobenzaprine twice a day. This is nothing by the way.

Later on that month, Joel's cousin was coming up to our place for dinner. Joel was in the shower, I was in our room folding laundry and straightening up while dinner was cooking. Joel and I were making some jokes through the non-soundproof wall. Then the jokes became one sided. I was on the floor, looking up at Joel in his boxers. He was on the phone with my mom. I was trying to get up and he kept yelling "Just lay down!" I looked at my leg.

"Hey, my leg..."

"Lay down!!"

Jesus, take it down a notch. He was walking into the kitchen after he got off the phone with my mom. He called his cousin and told him I had just had a seizure and that he probably didn't want to come up for dinner. Well, he was just pulling into the driveway. While Joel was distracted, I checked out my leg and started to get up. His cousin saw me in the bedroom and said, "How are you even walking??" Damn it! Joel came right in.


"Why aren't you laying down??"

"Because I can walk!"

"Go lay on the couch at least."

"Fine!"

That didn't last too long I was up checking on the food.

"Babe, get on that couch"

Eye roll. I went back to the damn couch. Then I was served dinner. That's a perk, right? But look at my leg, tell me that doesn't look like I was in Jurassic Park and one of the raptors attacked my ass!

Oh my goodness, of course I will tell you the what did we miss part! Joel. Shower. Jokes. Silence. Panic. Joel hopped out of the shower, no towel. I had fallen backwards and hit my leg on the end of bed frame. You know that metal part? Joel was standing over my face making sure I hadn't hit my head. Well......as he was dripping water all over, I had looked up and looked at him like he had violated me. So he hurried and grabbed some boxers. Those I remember.

As he's telling me this part of the story, holy shit I was DYING!!! I hadn't laughed so hard in a long ass time. I mean, the my chest hurts I can't breathe laugh!

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Did Nana See?

In March 2015, I was being tapered off of Depakote and onto Onfi...it was okay. I was also taking Meloxicam for pre-arthritis, Ativan for my cluster seizures, and Tramadol for my straight up pain. As time goes by, those medications take a toll on your body. I was 30, and I moved as if I was in my 80s. But that's another part of the package.

My VNS was being increased. I was sounding like the Christian Bale batman when my VNS would go off. There was a definite strain on my vocals and what I felt. It was so frustrating and sometimes I would end up with a hoarse voice or not one at all the next day.

My absence seizures were worse than they had ever been. I was having 100+ absence seizures a day. Laundry was even hard labor. I was so frustrated and annoyed. But there was one person I could never ever be annoyed with. Nana.


My Aunt Maine (Saint Maine), was Nana's caretaker. Maine is my paternal Aunt. Nana had been living there for a while. My Aunt and Uncle made sure Nana was fully comfortable and had everything she needed. They put in this wheel chair elevator thing on the back porch to get Nana out of the house when she would go on visits. I had fun using that elevator.

Maine had called to see if I wanted to spend some time with Nana while she and my Uncle went out of town. I absolutely wanted to! I missed my Nana!

It was August 2015, I had my appointment with Dr. Combie (P.A.) to adjust my VNS and my medications a few weeks before. Do you see where this is about to go?

Saint Maine and I. I was so excited she actually let me
take a picture of her with me. She doesn't do pictures

After the surgery, I just hadn't been the same. My brain, believe it or not was just worse off. I knew it was going to take time but holy shit did it take a major left turn.

Here we go. August it's just me and Nana. We had just had some ice cream together. She was ready for bed. For whatever reason, Nana was having such a difficult time getting out of her chair and I was very concerned about the fact she was struggling like that. Yes I was helping her move, she was 93. She kept saying "I'm sorry Lovey." It was my special name from her. Another favorite.

She was finally able to get the strength to get out of the chair. We made our way to her room. We went through her bedtime regiments. She told me goodnight and how much she loved me. Gave Nana a big smooch goodnight and went back to the living room not far from Nana's room. As in I could hear her just fine from where I was. I didn't sleep well. I kept checking in on Nana and just wanted to make sure nothing odd was going on. Well, wrong person to worry about, my absence seizures were letting me know I didn't get enough sleep.

The next morning, Nana and I had breakfast. Her nurse, Monica, was scheduled to come in for Nana's bath so we just kicked it in our pj's. Something wasn't right though. My absence seizures were going crazy and the length of them was getting longer. I was stalling big time. I called Joel. I told him what was going on and he told me I needed to call my mom to have be there with me.

My Aunt Marg and me. It was our family reunion,
the tag isn't so I can remember her name

My parents are about fifteen minutes from both of my Aunts. My Aunt Margaret was supposed to be coming by to get a list for some groceries. My mom gets there. My Aunt Marg gets there. Monica gets there for Nana. Lucky me! I mean that seriously.

I was bitching about my absence seizures and how bad they were. I sat down and grabbed my crochet stuff (Yep, I'm one of those people) and started to crochet with my mom next to me. Well...Hi paramedics! I was better at figuring out what had happened. I just thought oh shit. I looked to my mom and said, "Did Nana See?" The answer was no. I was so relieved. Then here she comes around the corner in her wheelchair with Monica. She was just smiling at me. I smiled back at here like nothing had happened. The paramedics are just some of my friends here to visit, they forgot to change their clothes.

Here is the what we missed part. I made that horrible sound, my mom looked over and got me down on the ground. First off, my mom has one of the worse backs. But, when that adrenaline kicks in, she can move 190 tensed up pounds to the ground like it's nothing. Also, why is it that every time I have a grand mal I'm in some dangerous situation?? Driving, scissors, crochet sticks.

My mom had my Aunt Marg call 911. Now Marg has seizures at night and is controlled, but she's also never seen one. So this was new to her. The 911 operator was confirming the address, Marg was getting frantic, something like yes that's the address can we get some damn paramedics here?? Something along those lines. Monica, grabbed Nana's oxygen tank and put the oxygen on me. Very chaotic.

I had to go to my parent's after that. Nana time was over. She called to check on me a lot that day.

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The VNS

I've been leaving you in suspense, waiting to get to the real intense shit. Well, let's start shall we?

In 2014, our department at work made some changes. I was now a Student Success Coach. It was like being an adviser at a University. It was incredible. I loved my job even more! I had been there for a year and even had a few awards!

Some upsetting things happened though. I had over a thousand students that were just mine, to plan their classes to graduation and get them registered. It was hard to keep up.

Then the Phoenix gave up on me. I was making excellent money, the most I ever had in my life! But that was not the time to have to trade in the Phoenix for a new car payment. I had Storm now. My newly used silver Toyota Camry. So grown up. She was great on gas mileage, but she wasn't the Phoenix.

I had a different boss, an awesome boss who was very understanding and made sure that I had help keeping up. My team was great too, awesome peers. We all had each other's backs. My team took on their own students and mine too. Everyone now had to know I had epilepsy. I was so grateful but also disappointed in myself. I could feel that I was losing this battle for control.

I had to have another VEEG. This time, I had to take my FMLA. All of it. Ultimately, this was the end of my promising career

It was in November that I was checked for my second VEEG. I stayed longer this time. I still didn't have a grand mal, but Dr. Barken felt we had enough information from the EEG to present my case to the surgical board.

I was scheduled to have the VNS implant in January 2015. This was my first surgery, I was surprisingly calm. The nurse started asking me to talk about myself, I think...then I was all done. So that's how being put under works! I was super loopy but felt faaaabulous!

Dr. House said that most people didn't need to take the pain meds after the surgery. I'm guessing they were super heroes? I was in SO much pain!

I was laid up for about a week. The VNS wouldn't be activated for another month. Activated, so weird like I'm a robot. It was clear that I wasn't going back to work. Joel and I moved back in together. I filed for disability, six months later I was officially disabled. Didn't see that in my future...ever.

In February 2015, I was activated. They let me know that it would take some time to make adjustments. I had been on Depakote for six months now. I had gained fifty pounds during that time. Depakote was no longer Jekyll, it was Hyde. Hyde on steroids. Ready to start some fun? Let's go.

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Sparky

It turned out that Dr. Barken had reached out to my mom a while back to try researching me and my siblings. I wasn't having that. Then she would turn out to be my new doctor. I was still on Topamax, and I had starting a new job. I LOVED my job. I was working for an online school for adults, and I was in the financial aid department. I was a very sparky co-worker, I made the office lively and entertaining! I was also such a smart ass. Everyone thought I was hilarious. Let's be honest, I'm pretty funny.

I finally felt like I was serving the common good. Making sure that these students, even though they were adults, wouldn't make the same mistakes I did. There were A LOT of students that I would talk to in a day. There was one student I had talked to a few days in a row. I was trying to help with her financial aid. I had been told when I started that job, that I might cry. I laughed, I was much tougher than that. Or so I thought.

This student had called the next day and I talked to her again. This time, I didn't know what I was talking to her about and what I was talking to her the day before. I was trying to get more info from her, then she laid it on me. She started to get frustrated and then said, "Is there something wrong with your brain or what??" Oh damn. The issue we were trying to figure out for her had to be done with my manager anyway. So once I transferred her, I headed to the bathroom.

I wept like a baby. I mean WEPT. I looked in the mirror for a while and finally accepted that I couldn't keep pretending like nothing was wrong with my memory and my seizures. I went back to my desk. My boss could tell I was upset. I looked at her and said, "No I didn't break from the pressure, she asked if there was something wrong with my head and I have epilepsy." There it was, I finally let work know.

I had my first appointment with Dr. Barken. She is an incredibly brilliant doctor. Thank God she had a medical student with her. She would start speaking in this super high intelligent language and I would just look at the medical student to translate. The translation was that MY gene had mutated somehow. Since I had been on so many medications and not controlled, it was time for my first VEEG.


In the end of August through the first week of September I looked like this. Super hot right? The goal was to determined if I would be a candidate for the VNS (Vagus Nerve Simulator).

Here, you can read about it to get more depth:

VNS Info

In summary, it's a device that looks like a pacemaker. It goes in your chest, and these leads go to your vagus nerve, I just say my neck area. It's supposed to be very effective to those who do not respond to medications alone.

I was supposed to stay until I had a grand mal, but my brain wasn't stressed out enough. I was only having absence seizures like I had never felt before. I had been checked in for just under a week. My absence seizures were back, to back, to back. Eventually, I had a breakdown and was throwing up and crying. I was done, I was so done. So I got to go home. Going home meant a new medication. Depakote, round two.

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Boomerang

They call us the boomerang generation. The generation that moves back to live with their parents. In 2012 I boomeranged. The funny thing is that my parents, are the only ones I know who want their kids to move back in and stay FOREVER! It was a good thing though, I was able to spend some lost time with my family.


Some serious shit had gone down so I moved back. Every other weekend, I would drive up to see Joel and Keaton. For that reason alone, I needed to be able to have a valid drivers license. On the medical questionnaire, I only counted my grand mals for when my last seizure was. I was still having a shit ton of absence seizures. Dr. Al Sadat and I had to part since my insurance was changing. I had to find neurologist number five.

Bills had to be paid and I needed a job and quick. I found one. I was doing data entry. Probably the most mellow job I ever had. I was no longer in the world of customer service. It was amazing, I was able to chill to music while focusing on one thing. My brain needed that for a while. The absence seizures were very severe with all the time on the computer. Even with the extra breaks I was able to take because of my epilepsy.

I found Dr. Summerfield; close to work. Very nice guy. Once again, we had to make some changes. Dr. Summerfield and I agreed to work on increasing the Topamax. Finally we reached the max on Topamax. We had gone as high as we could. It obviously wasn't taking care of the absence seizures. He added a sister pill called Vimpat. Oh man, that made things very bad. My absence seizures were more of blackouts now. That makes it difficult to drive doesn't it? He took me off of the Vimpat after about a month. Around the same time, he broke the news that he was closing his practice. Damn it!! He referred me to an Epileptologist named Dr. Barken. Epileptologists specialize in guess what....EPILEPSY!!

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And...Switch

After the grand mal, Joel and I went to my neurologist. I told him I could not stay on that Keppra. Not only was I just...well a bitch, but it just wasn't helping my absence seizures at all. If anything they were worse and they weren't the same. They had jumped up to a new level. Dr. Williams' response to my request was to boost up my dose. I know it's common to increase the dose and see what happens, but I HAD to get off of this shit.

Next move. Different neurologist. We met with neurologist number four, Dr. Al Sadat. I do my research first. I need a four star rating or above. Doesn't leave much room for error does it? He's a great doctor, but some things happened that I had to leave him. I'm getting ahead of myself...again. He addressed all of my concerns and swapped out the Keppra for Topamax.


Topamax and I started a new relationship. Along with Xanax. There we were, the three amigo's getting to know each other. By this time, my medication tolerance was rather high. We had to start at a fairly high dose. The Topamax was a great start. It definitely helped bring those absence seizures down, or was it the Xanax? Who knows.

My mood drastically improved. See look how happy I was? I was also at the Dane Cook tour, so ya I was very happy in that photo. I was able to cope with shit better. I thought we were on our way to something beautiful.

My weight was normal again too. It was awesome through High School, even on the Depakote. Same with my Freshman and Sophomore year of college. I'm 5'7" and stayed at 120 lbs. My BMI (body mass index) was 15% and yes I was very proud of it. I busted my ass every day. My dad would joke about the "Freshman Fifteen." It's pretty common for some reason to gain fifteen pounds you're first year of college. So I lost 20.


Lamictal was kind to my body. Keppra HATED my body. Once I was on the Topamax, my weight went back down. Maybe it was the Xanax, I don't know. I'm kidding, the Xanax was helpful with my anxiety and such but it wasn't the only factor in this improvement. I was actually very happy with Topamax. We were in our honeymoon phase. Joel was happy too. Let's not forget about that relationship.

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Is The Car Okay??

Oh there she is, the Phoenix. She was my first car. Brand new from the show floor. I was so proud showing her off to everyone. I got her in 2007. Let's jump ahead now.

Back to the night of July 2009. My doctor was still signing me off to drive since I hadn't had a grand mal in so long. So, Joel and I are leaving his dad's house to go to my apartment. There's a large stretch of highway that goes from his dad's to where my apartment was.

We're on that stretch. This takes us from going 45 mph to 60 mph. We're going 60 mph on our way to my place, I went to change the channel on the radio....there's flashing lights and an officer next to Joel that asked me if I knew him. I started bawling and said he was my boyfriend, I finally had realized what had happened.

As always, my experience was not like the other's. Joel heard that exorcism howl. Then we started drifting into the oncoming lane (it was late there wasn't anyone on the road). He started shouting "babe?? Babe?? BABE!!!!" I was slouched onto the steering wheel. He reached over and started to try moving my foot. It took all the strength he had to move my foot off of the pedal. He finally did, he defeated my super human seizure strength. He had the steering wheel and now had his foot reached across on the brake.

There's a corner on that stretch next to this group of trailer home "show trailers." It had just been empty. Now it's an Instacare. Ironic isn't it? Okay let's rewind. Joel got us into that empty lot. He lifted my head back and saw the blood streaming down my mouth. My eye's were rolled back and I was blue in the face. Joel called 911 hysterical. He tells the 911 operator that his girlfriend is dying on him and that I might have had a seizure. They needed to know where we were so he had to run to any street sign he could find. He came back to the car to make sure I was breathing. I was starting to come out of the seizure and he asked me if I knew who he was. I guess I said no. I don't know, I wasn't aware of my surroundings yet. He thought I had brain damage and now I wouldn't remember him.


Every officer, fireman, and paramedic within a 10 mile radius was there. It must have been a slow night. They told me to get on the gurney. I told them no, I was fine I didn't need to get in the ambulance. They brought Joel over to tell me to get into the ambulance. I finally did. While they were loading me into the ambulance, the public servants were cracking some jokes at Joel asking him if he needed some toilet paper. Really?? He was just traumatized and you're going to pull the shit your pants joke?

Whatever. Joel had to follow the ambulance, he called his dad with some tears letting him know what happened. His dad helped to calm him down. Then Amber, I don't think she was too surprised. I mean she called it really. He called my friend/roommate, Kait, to let her know what happened. She met him at the hospital.

In the ambulance, I kept trying to figure out where the hell we were as we drove past every single thing on the road that I know. But, I didn't know them in the ambulance. I didn't know a lot of things. They asked me my age, I said I was 21. I was 23. They asked my medication, I said Lamictal. I was on Keppra. I was still so pissed that I couldn't figure out where the hell we were. We passed the Walmart, even then I couldn't place where we were. I knew the hospital though once we pulled in.

They took me into the emergency room, I finally noticed the blood. Didn't notice the taste in my mouth or down my throat the whole time. I had bit my tongue to hell and was extremely sore. Joel was in the room with me, and then Kait. She was crying and I smiled at her and said it was okay. Joel had been asking me if I wanted him to call my parents. I kept telling him no I'm fine and it's late. Then my logic started coming back. I looked at Joel and told him "Damn it, call my parents, they're gonna get an ambulance bill."

I don't even know what time it was, but late enough that you only call when something bad has happened. Joel gave 'em a ring. My mom answered, of course she already knew. There were limited options as to why he was calling. She was asking Joel some questions. So, my mom was asking mom questions. Then the critical question in the background, "Is the car okay??"

Awe good ol' dad. Joel hadn't met my parents yet. He turned around fairly slow with this puzzled look on his face. He said that my mom wanted to talk to me and as he handed me the phone he said quietly "You're dad just asked if the car was okay?" I rolled my eyes and said, "Yep, he would." I started talking to my mom, let her know I was okay and that I was going to let work know I wouldn't be in for a few days.

Don't get it wrong, my dad isn't some cold-hearted person. He shows his love....differently? You know he loves you, you might question it sometimes, but he's just a tough love kind of guy. Obviously I wasn't dead, he would have known from my mom's reaction. So, that meant he could quietly worry about me and address the next question. Was the car okay? It was a reasonable question, I just paid for the Phoenix it was actually in his name.

The Phoenix was fine, she didn't give up on me until years later. Joel finally met my parents. My dad never liked anyone I dated. In fact, he hated them. I was shocked though, and a little teary when my dad thanked Joel and shook his hand. It was fate. Joel and I were fate. He saved me, loved me, and my dad shook his hand.

The moral of this story is to tell whomever you are dating, that you have epilepsy and may seize on them unexpectedly and what they should do. Like I've said before, there's far more awareness and less judging. If they break it off once you tell them, then they're assholes and saved you from wasting your time. Odds are they'd probably be more likely to break it off after you have a seizure and find out that you knew you might. Just saying.

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