Since my epilepsy diagnosis in May 2016, I’d sometimes read how people who live with chronic illnesses live healthy lives while treating themselves naturally and/or holistically. Each time I read a story like that, I wholeheartedly cringed. I just thought it was all bullsh*t and lies; that it was all just a promotion of a certain lifestyle that wasn’t even realistic to begin with. It seemed impossible to imagine that a chronic illness could be managed, or as they say cured, without in-taking any medication. I wouldn’t say I had a good experience when it comes down to the medical system, but I at least thought that those that were considered to be ‘the best of the best’ knew what they were doing and knew how to treat a patient.
As the years went by, though, I realized that the medical system was just a business, and I, as a patient, was a customer that they could toss aside at any moment. That type of treatment started just as soon as I was diagnosed with epilepsy. He seemed to only care about my financial situation rather than what was actually happening to me medically. He prescribed me the cheapest drugs and made sure I was taking the highest dosage. When one brand of pills didn’t work, he’d prescribe me a different set of cheap medication with the highest dosage.
That went on for years until, at one point, my condition worsened and took a turn for the worst. I’d gotten to the point where I had 50 seizures a day everyday. Most days, I wasn’t able to function or even do the basic daily chores. Not to mention the fact that I wasn’t able to work. Most days, I’d worked maybe an hour a day whereas full-time employees work 8 hours a day, and entrepreneurs work even more. I was too tired to do anything throughout the day and my body was failing me. It was no way to live. If my husband and I didn’t live with my parents at the time, I don’t how we’d survive; if we’d survive in the first place.
In April 2018, I decided to get proper testing and treatment done in Israel, my homeland. After weeks of daily testing, hospital visits, and doctor’s appointments, questions were finally answered as to why nothing ever worked and why my condition wasn’t getting any better. With that being said, new medication was prescribed to me and I found myself a new neurologist who specifically specializes in epilepsy and pregnancy.
All seemed fine until October 2019. All of a sudden, I fell and couldn’t control any part of my body. I had a seizure; a grand-mal seizure. It was something I hadn’t experienced before. I thought the worst part of my epilepsy diagnosis was over, but yet again, I was at square one. For the next few years, all I knew was was living a life where I had a grand-mal seizure, recovering from the seizure for a month, and then having another grand-mal seizure just as I recovered from the previous seizure. It was exhausting. I even had grand-mal seizures in my sleep, which is the worst things that could happen to someone with epilepsy as something such as this could cause death. Luckily, I wok up each time I had a seizure in my sleep.
I felt absolutely helpless. I didn’t know what I was supposed to do anymore. I did everything I was told to do by doctors. Nothing worked. It only had gotten worse. And partially because of that, I wasn’t able to get pregnant as I planned to all these years. By some sort of miracle, I got pregnant naturally at the beginning of 2022, and I was able to get through the pregnancy full-term. But it wasn’t without any hiccups of course. Throughout my pregnancy with my son, I had two grand-mal seizures. They could’ve been a serious life-threat to both me and the baby, but it didn’t affect us at all. He was fine. He IS fine.
But these two seizures made me realize a thing or to about my health. I had an epiphany. And that was that doctors really don’t know sh*t. Television TV personality, Maria Menounos, recently said, “You have to be the CEO of your health. You have to understand what’s going on with you and you have to do the research to figure out what’s your solution for you.” I resonated so much with this quote. Menounos recently went through a health crisis herself when she was diagnosed with breast cancer, so she’d know exactly what she was talking about. After all, she went through it. Regardless of what the health crisis is, it’s still a health crisis and there are still doctors involved.
With all of that being said, once my son was born, I decided to take matters into my own hands. I was tired of relying on other people to dictate how to manage my health when they really knew nothing about it; when they saw me as just their customer instead of a human being. After I had my first grand-mal seizure during pregnancy at 18 weeks and I called my neurologist for an appointment, he simply told his secretary to tell me he didn’t have time for me. It was just careless. For some odd reason, he’d sent me to another neurologist as soon as I found out I was pregnant. He told me that it was in order for me to get a woman’s perspective, but that’s not even a thing. I had a few appointments with the second neurologist, and it was easy for me to understand that she was just horrible. I only spoke to her once, and the rest of the time that I was her patient, I only spoke to the nurse. At each appointment, I had to remind the nurse that I was pregnant. Mind you, the only reason why I saw this neurologist was because I was pregnant.
I was fighting a battle that I couldn’t win. There was no way of winning if I were to do everything that I was told to do when it came down to my health. I decided to take matters into my own hands and make my health my main priority. I stopped taking my medication completely and started to really get to know my body. I began treating my body as if it was the most important person in the world to me; a treasure. Why wouldn’t it be a treasure? I began learning what triggers my body. I treated this like a science project. There were several major aspects that had an effect on my body:
- Alcohol intake
- Food intake
It’s been 8 months since my last pill intake, and I’ve never felt better. When I was taking my pills post-treatment, I started feeling less of a person and felt more like a vegetable. I was depressed and the worst part of it all was that I still had seizures. I can’t be that vegetable anymore. I have a son. I have to be present for HIM. Otherwise, this illness will affect his life in a negative way, and I just can’t let that happen. I want him to watch me succeed – my health journey included.
The truth of the matter is that no one will ever be there fore you more than you yourself. No one actually cares about your well-being more than yourself. Therefore, you have to fight for you. Doctors don’t know much of anything, and they don’t care to know much of anything. They’re not in your shoes and they don’t see what you go through every single day to get through the day. They don’t care about you. They don’t care whether you live or die. They get new patients every day. Managing a chronic illness without the guidance of a doctor and without medication isn’t for everyone. But it IS possible. What you need to do in order to get that point is spend YEARS getting to know your body and the new you. With that being said, I didn’t cure my epilepsy condition. I manage it. I hope you do too. I hope that one day, you’ll get to the healthiest you, because you deserve it.