What a loooooooong strange trip it’s been.
When I was about 21 years old, I started having these strange episodes. We’ve all had deja vú, right? Well I would start to get deja vú, but instead of snapping right out of it, as one normally does, they would last anywhere between 10 seconds and a few mins. I would feel like everything that was happening around me and everything that was being said was something I had experienced before. I thought maybe it was reminding me of a movie I had seen before and I would try SO hard to figure out where I knew it from. Until the deja vú ended, I wouldn’t be able to speak. I had no clue why these things were happening to me and I actually thought I was going crazy. So much so that I didn’t tell anyone. For two years. I know I know!! It’s awful. But I was scared to admit these weird things were going on!! FINALLY, I asked my dad if anything like this had ever happened to him. He looked at me like a deer in headlights and said, “NO! We’re going to the doctor TOMORROW!!!”
We had no clue where to start so we went to the ER. They had no clue what it was but they referred me to a neurologist. He actually didn’t think anything was wrong with me and thought I was making these things up. Just to pretend like he was doing his job, he ordered a CT and an MRI scan of my brain. CT showed nothing. MRI showed.... something. The radiologist diagnosed it as a possible ganglioma (tumor). I didn’t hear this until my follow up appointment with the neurologist who read this off of a paper the same way you would tell someone they have an ingrown toenail. He didn’t even make eye contact with me!!!! I immediately started to cry and told him that he may deal with brain tumors everyday but I DON’T!!!! He handed me a box of tissues and said, “Do you have any questions?” UGH! I remember walking out of the hospital from his office feeling like my world had just been turned upside down. I had no idea how to live with a brain tumor!!! I didn’t know what to do next. I just sat on the curb outside and cried before calling my family with the news.
We were referred to a neurosurgeon who confirmed that these strange deja vú with the inability to speak were actually seizures that were caused by the tumor. He also said he wasn’t exactly sure WHAT the thing in my head was. It didn’t exactly look like a tumor normally does and he thought we should just keep an eye on it and start seizure meds to try to get everything under control before approaching surgery to remove it.
THAT was 10 years ago.
SINCE THEN, I’ve seen 5 neurologists, been tried on 6 different medications with countless dosage changes. One of the meds I tried made me a psychotic rage machine, one made me so foggy in my brain that I couldn’t finish a sentence because I kept losing the word I wanted to say. I’ve had MRI’s every 6 months and the “thing” hasn’t grown at all but my seizures have also constantly managed to break through. I had just learned to deal with the occasional weird seizure now and then because I don’t lose consciousness at all and I can continue on like normal. I just can’t really understand words very well when people speak to me and I can’t get the words out that I want to say. Even my friends and family understood that occasionally, I would hold up 1 finger and that was my signal to pause the conversation.
Then, as I was getting ready for church in spring of 2016, I felt a normal seizure coming on. I was sitting at my vanity putting my make up on and I remember just laying my head in my hands waiting for it to blow over. THEN I woke up on the floor about 5 feet away from the chair I was sitting in. I saw my right leg and arm shaking and I also saw that I had barely missed the sharp edge of my dresser that would have definitely cracked my head open!!! I had NO IDEA what had just happened! I stood up and noticed my left ankle was stiff and a little sore. After going to urgent care, it was determined that I had thrown myself over during the seizure with such force that it caused a spiral fracture in my left ankle.
That’s when my neurologist said it was time to take another look into surgery to remove the “thing”. (By the way, the thing will be referred to as Horatio from now on as that is the name it was given from my best friend)
Since then, life has been pretty bonkers. I have been pushed to the limits mentally and emotionally, poked and prodded, scanned and stabbed, cooked and nuke’d and somehow I’ve only cried twice. Hooray! Here’s a quick list of all of the procedures I had to do before being presented to the board of neurosurgeons at UAB to see if I was a candidate for brain surgery
-7 day stay in UAB with eeg wires on my head to observe seizures. This included several rounds of sleep deprivation, hyperventilation, removal of my meds and ultimately ended in me having another grand mal seizure because my body just caved under the pressure
-3 hour long test of nothing but the most difficult brain teasers you’ve ever heard of
-psychological evaluation (they probably ran away screaming after I left)
-WADA test which entails running a catheter from my carotid in my groin to my brain while putting one side of my brain to sleep at a time and then asking me a bunch of questions to see how dominant my left/right side is when it comes to speech and memory.
The last procedure is intracranial EEG monitoring. I am scheduled to go in on April 4th and they will take me into surgery, remove the part of my skull over my temporal lobe (that’s where Horatio lives), place a grid with wires directly on my brain and then sew me back up, wake me up, then try to see more seizures to help them narrow it down to see exactly what tissue they can safely remove to help me have a (hopefully) seizure free life. Then I will spend another 5-7 days this way doing the same things I had to do in the First hospital stay. After they’ve seen what they need, I’ll go back into another surgery to remove the grid/wires and remove Horatio!
THEN I’m out of work for 6-8 weeks.
SO. Here’s where I need you.
My insurance has an incredibly low deductible of $750. However, I have an out of pocket maximum of $6,000. So let’s do the math here. My deductible has of course been met already this year. This surgery will be covered at 80% by my insurance. So that leaves me with 20%. This surgery will cost anywhere from 80-150 THOUSAND DOLLARS. I will immediately hit that out of pocket maximum of 6k.
Here’s another hiccup as if I needed another one.
I’m a contract worker and that means I don’t get vacation time or sick leave and I don’t build up any personal time off. So that’s 2 months of me making zero money.
Oh and did I mention that I already have a mountain of debt that I owe UAB from the procedures that were done last year? Where is the wine?!
Anyone who knows me, knows I do not ask for help. I hate it. I would rather sleep in the dark and freezing cold in my house with no power for a few days until I can pay my power bill than ask for money. I’m not going to say I’ve never had anyone help me before. They have. I have a wonderful support system. But usually, if I have received help, it’s because they told me to shut up, stop saying I can handle it on my own, they were doing it whether I accepted it or not, you get the picture.
But I’ve found the end of my rope. Anything would be greatly appreciated and I love you all!