As most of you know, I’ve had a whirlwind of a time over the past few years with doctor’s and testing because of my seizure in November of 2017. I wanted talk about something really important today, and please understand that this is just based on my personal experiences. I will not be held responsible if you decide to do something that can result in something bad happening to you because you took this post out of context. Ok, now that I got that disclaimer out, we can move on!
If you are new here, you probably don’t know that I have epilepsy. I was diagnosed in 2005, and it’s been pretty controlled since then. There were a few hiccups along the way because my seizures are caused by drinking too much, not getting enough sleep, and being way too stressed out. If you know me at all, you know I have trouble sleeping and am always a ball of stress.
My last seizure was slightly different from the rest. My neurologist saw me as a number and really didn’t do anything. He ran the usual tests, told me my results were the same, and that was it. He didn’t look into it further. I didn’t get anywhere with that doctor. In 2005, he was the best doctor, but I’ve noticed him change. He has stopped treating his patients like people, and started treating them like a number. Basically, he’s turned into your typical hot shot NYC doctor now.
Based on my experience, I wanted to talk about how I dealt with being treated like a number. Now, again, keep in mind this is not advice, this is just me speaking my opinion.
Ask the doctor questions
I’m shocked at how many people don’t ask their doctor questions and they just blindly do whatever the doctor says. I’ve seen my fair share of doctor’s and trust me, they are not all out to help you. Always make sure you ask questions. For example, my physician back in NJ sucked. I had bloodwork done, and I never got a call with my results. So I took it upon myself to call.
Apparently there was concern that I may have another issue. This doctor has seen me since I was in high school, and she knows my parents and all of their history, and it’s something that my mom has. However, she didn’t bother to call. I asked the nurse if I could come in and talk to the doctor. The nurse’s response was “well it’s nothing serious, but the doctor wants to keep an eye on it every 6 months.” I started asking if there is any way I could prevent it from getting worse with diet, exercise, or anything of that nature and the nurse said no. Just a simple no. No other information was given to me. Needless to say, I never went back.
Now, with the epilepsy, in 2005 when I was first diagnosed, there were so many questions. I wanted to fully understand what was going on with me. Even though anything that happens with a brain is a huge history to doctor’s, my neurologist took the time to answer every single question I had, no matter how minute it may have seemed.
Alternatives to heavy medication
Now, do not do anything on your own when it comes to medication! This is where I will not be held responsible for any stupid things you decide to do. When I did more research about medical marijuana, I asked my neurologist about testing it out. I had done extensive research, and was at a place in my life, where I was able to test out a new medication. Life wasn’t as crazy.
My neurologist however was not willing to test it out. He did not believe in medical marijuana. I don’t think this is fair. If a patient is asking if you can just simply test something out and you choose not to do it based on opinion, that’s stupid. Or the fact that he would lose thousands of dollars if I stopped taking my medication. Without insurance, my medication is almost 12,000 dollars a year. So you do the math.
This is your body
This kind of goes along with what I said previously. At the end of the day, this is your body. You make the final decisions on what happens to it. The doctor only has so much control over you, unless you’re wanting to kill yourself, or you are a danger to others. However, if you’re doctor says you are obese and you’re going to die of a heart attack, it’s up to you whether or not you want to live or die. If you are diagnosed with cancer, you have the power to choose to go through treatment or not.
Always get another opinion
When I was first diagnosed with epilepsy, we went to a few different doctors, countless hospital visits, so much testing, and it was so important to get another opinion. The neurologists that I did see diagnosed me with the same epilepsy, but they were different. One neurologist scared the shit out of my parents and me. He was saying that it’s hereditary and how my brother will also definitely have it if he doesn’t already. He was saying how I’ll never live a normal life again and how I’m handicap now. While the other doctor (the one that I mentioned earlier, but this is when he was a human being not just a hot shot doctor) assured us I can live a normal life.
I obviously have to be more careful, and there are certain things that I can’t do, but that my life would be as normal as it could. He also assured us that it is a possibility my brother can develop it because of the age he was at, however it still wasn’t 100% proven it was hereditary so he also might not. That’s why I stuck with this doctor (minus that one year where my insurance was so shitty it didn’t cover him) for so many years. However, recently I was not happy with him. Now that I’m in Florida I will be on the hunt for a new neurologist.
xoxo Monica
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