The Graceful Boon

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THE DIFFICULTIES OF BEING EPILEPTIC AND PREGNANT

With the pregnancy and the health struggles I’d been going through recently, I’ve been writing a lot about the health care system a lot on here, specifically the Canadian healthcare system as I reside in Canada. I told you all about the time I was involved in a car accident when I was 18 weeks pregnant, as well as the time I suffered a grand mal seizure when I was 21 weeks pregnant. Since those two incidents occurred, I’ve been seeing so many articles about the failing healthcare system; not just in Canada, but worldwide as well. I recently had a conversation about it with OBGYN during a routine appointment, and she herself said the the healthcare system is complete crap.With so many healthcare providers shortages and emergency closures, it’s become a disaster.

When I was in the emergency room on both instances, I saw things that really blew me away. People that needed urgent medical attention had to wait for hours just to get noticed by the medical staff. Watching them suffer through their pain was heartbreaking. I wanted to help them so badly, even despite the fact of how much I was struggling myself through my own pain. When I was first called by a nurse, she told me there is an 11 hour wait time for a doctor conduct an ultrasound to check on my fetus. There was no way in hell that I’d ever wait for 11 hours to check on my unborn child. I have cerebral palsy and epilepsy. My child could be in danger. I could be in danger. I needed to be taken seriously.

Thankfully, I left the hospital unharmed both times with doctors telling me that baby and I were safe to go home. All I was told by the end of the night, or the start of the morning more like, was to see my regular neurologist as soon possible. My troubles were over after a few weeks of back-and-forth hospital visit. At least that’s what I thought anyway. But I was completely wrong. In fact, my troubles had just begun once I left the hospital the second time around.

When I started my IVF process last year, my neurologist referred me to another neurologist for that time being. He referred me to her because she was a specialist in women’s health, and the plan was for me to see her during the IVF process, as well as all throughout my pregnancy. My first appointment with her was right before my embryo transfer, which seemed to be fine. I was more or less happy with my new neurologist that I’d see for a limited time period. After doing blood work and confirming that my condition was good at the time while taking part in such a high-risk procedure, she told me to call her office to book an appointment once I was pregnant. When I asked her what would be the next steps once I did get pregnant, she told me she’d be seeing me every month throughout the pregnancy to check in on my progress, my health, and my well-being throughout the pregnancy.

I didn’t end up getting pregnant through IVF, but rather naturally a few months later. By the time it was confirmed I was indeed pregnant, I was already almost two months along. I immediately called the neurologist and got myself an appointment a few days later. During the phone call, I spoke to the nurse, which was fine with me considering it was a such a last minute appointment. But then…. the red flags started kicking in. The nurse ordered me to have an EEG done, which was unnecessary considering I already had 5 of them done in my lifetime. Pregnancy wouldn’t change the results. I communicated that, but I wasn’t listened to.

I agreed to have an EEG conducted despite the fact that it’d be a complete waste of my time. Once the results were ready, the nurse called me again to tell me that there wee no changes. All was good up until she told me that my next appointment would be in SIX months, which would’ve been after my due date. It was absolutely unacceptable, so she changed it to three months. It was still unacceptable. Luckily, I had an appointment with my regular neurologist a couple of weeks later. I told him I only wanted to see him throughout the pregnancy, but again, I wasn’t listened to.

I did as I was told by the hospital staff after I had the seizure. I called my regular neurologist to ask for appointment, but all I was told by his receptionist was that he was all booked up and that I should call the other neurologist, or as she put it, ‘the specialist’. When I called the other neurologist’s office, there was no answer and no one was getting back to me. It took me leaving 5 angry voicemails for someone to get back to me. Again, I was talking to the nurse. I didn’t get much of anything from that phone call. In fact, I got nothing. I was told to come to the neurologist’s office to see her in person on August 23rd, which is would be my appointment that was already booked from before. At that point I was absolutely furious. August 23rd would mark 8 weeks since the seizure happened.

A few weeks later, I had my regular appointment with my initial neurologist. I told him what my experience had been like with the neurologist that he referred me to. I only directly communicated with her once, which was before I was pregnant. I was told I’d be treated one way, but I wasn’t treated at all throughout the pregnancy. Not only that, but I constantly had to remind the nurse that I was pregnant in the first place. We both agreed that it was unacceptable and that he’d be the only one to see me as a patient from that moment forward. Immediately during the phone call, he gave me a step-by-step process of what I’d be doing next to make sure I’d have a safe and seizure-free pregnancy. It was a sigh of relief.

It’s absolutely absurd what’s happening right now in the healthcare system. But it shows us one thing and one thing only: At the end of the day, you’re all on your own. No one actually cares about you except yourself. You are the one responsible for your own body. No one will provide you the care for you unless you demand it.

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