An Unusual Post

Hello everybody. I have been wanting to write this post for a while, but I haven't got around to it. You know how everybody is different? They all have their own story and things about them that you may not know? For example, people don't just look at me and think, "I bet she has epilepsy. Yeah, she looks like she has seizures." That isn't how it works, and I think it's rather intriguing how different we all are. Someone who seems like they have nothing wrong with them on the outside, they have their own struggles. I have a point, I promise. I'll get to it.

Last post I talked about how I was going to be going to an endocrinologist to find out more about hormones and whether I should take progesterone for my seizures, because they occur on my menstrual cycle. On Wednesday I had my appointment. It went well, though I am sad that this doctor is leaving. She is incredible and made me feel so comfortable. It was interesting because she had never heard about seizures and hormones affecting each other. It was new to her, but she was kind and has been doing research on it. She's going to pass it on to the other person we will be meeting with. On Friday, I got my blood taken, and that was quite the adventure. I don't want to go into details because it was rather embarrassing, but let's just say that it didn't go as planned. However, it got done and now I am waiting for the results. They want to find out why I am always so fatigued and want to test some other things, as well. Overall, the appointment with the endocrinologist went well. I have another one in November.

Sometimes it seems like I am missing out on so much, due to my health condition. I've always thought, "Why me?" Really. Why me? Of course I have good and bad days, but that is the general question I have on my mind. I know everybody has something. I don't want to seem smug, but I don't understand why this happened to me. I meet people with conditions that are much worse than mine. But that is another thing. Are they really worse? Is one thing more terrible than another? I believe that they aren't "worse than the other". They're just trials. I don't know why I have seizures and why my family doesn't. However, they have things that I don't.

When my sister was 19, she was diagnosed with Spherocytosis. Woah. What's that? Well, it's an extremely rare disease that causes your red blood cells to be sphere-shaped, rather than "bi-concave". Because they are misshapen, the spleen doesn't recognize them, therefore destroying them. That is a brief summary.

My sister had been sick for a while. Little things that were normal to her, were not, but she didn't know anything was wrong for a long time. When she was 19, she almost died. I was nine and when my parents told me, I was terrified. When the doctors found out what was wrong after tests and more tests, she had her spleen and gallbladder removed. The rest of our family was tested for it to make sure we didn't have it, which was a relief when we tested negative. Though my sister had to go through all of that, she made it through, and she is doing great today. She has two kids and is married to a pretty chill guy. <--- Funny, right? No? Sorry.

I actually don't know what my point was supposed to be. Let's go with, "Nobody is alone."

The Next Step

Where have I been? Well, I've been living life. I haven't gone anywhere, but I've been working and haven't felt inspired to write. I write when I have something I feel I need to say. I don't believe in writing just for the sake of getting something posted.

Work has been great. I continue to learn new things everyday, and I love the people I work with. Some of those people have left, but I am grateful I had the chance to work with them. They're all quite different, and I enjoy getting to know each of them. I've been fortunate to start working more hours, as well.

A month or two ago, my mom and sister went to New Orleans to an Autism Conference, starring Temple Grandin, who in my opinion, is one of the most extraordinary people. If you don't know who she is, look her up! A movie has been made about her that I fully recommend. Anyways, I don't remember all of the details, but my mom met a man there who I believe was a pediatric neurologist or epileptologist. He and my mom got talking and she told him about my seizures and the story that goes with them. She made sure to tell him that I have seizures when I am on my period cycle every month. They occur before, during, or after. Oftentimes when I am ovulating. He told my mom that it sounds like I should get my progesterone levels looked at with an endocrinologist, that I would possibly be prescribed progesterone and that that may help with my seizures. It makes perfect sense to me. I read up on it, and I will attach the link to one of the websites. https://www.epilepsy.com/learn/professionals/refractory-seizures/potentially-remediable-causes/catamenial-epilepsy

On Wednesday, I have an appointment with an endocrinologist. The pediatric neurologist my mom met said that I would most likely have to get my blood taken five times this month or next, so they can monitor the hormones in the different stages of my cycle. I am a bit nervous being that I hate blood and I almost pass out each time I get it taken, but it'll be worth it.

Yesterday at work I had some seizures. The night before I had a couple, but they were barely there. Although, yesterday when I woke up, I knew I would have seizures. I had a feeling. Sure enough, later when I was called to the register, I had several in front of customers. I had different reactions, as usual. One lady was nice and made sure I was okay. Another was not cruel, but not kind. Her children were laughing along with her. I'm getting used to the reactions people give me. I have had to endure them since I was 13 years old. They don't affect me as bad, but nevertheless, I'm affected.

I worked today. I cashiered most of the time, and what do you know, it was seizure time! One of them I just told the customer that I was out of it. Another time I don't think anyone noticed, which was great. I have to think of the positive sides to all of this, but I can't seem to find any. I'm not trying to depress anyone, but it's really hard to be positive with epilepsy, you know? I think something positive could be that I could be getting closer to figuring all this out.