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!!

DON'T FORGET TO CLICK FOLLOW TO GET UPDATES ON NEW POSTS!

FOLLOW

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.

DON'T FORGET TO CLICK FOLLOW TO GET UPDATES ON NEW POSTS!

FOLLOW