Getting Through It

Where have I been? No where, really. I went to Ohio a couple months ago, but other than that, I've stayed put. I have been meaning to write a post, but I guess I haven't known what to say. I'll start writing and see where it takes me.

This past month or so has been hard. My seizures haven't been getting better, in fact, I think they are getting worse; more frequent. This has made it so I can't work without having seizures the whole time. Sometimes I have to stay home because they just won't stop. In the past, at my old job, they were not as frequent, so it was fine and I got over it. Yes, it was beyond embarrassing, but these days they occur so close together that it seems they are completely taking over my life. And what was worse? My neurologist did not help at all. "Let's go up on this medication", was all she said. She wasn't even my neurologist. She was her assistant. Twice in the four years of "seeing" her, I saw her. Enough was enough.

Of course there are other neurologists out there , and I needed a new one. My mom made an appointment with one in SLC, and we got in fast. Let me tell you, this appointment was a special one. It was strange to be talking with someone who actually seemed to care about my situation, and truly wanted to help. My parents wanted to come along and we all talked for a long time, me telling my new neurologist my story, and answering the questions she had for me. It was convenient because the hospital already had some of my records from my short stay there at the age of 16. My other records were transferred over from my most recent neurologist. At the appointment, my new doctor increased some settings on my VNS (Vagal Nerve Stimulator) because I felt like it wasn't working anymore. Instead of it going off every three minutes for 30 seconds, it now goes off every 1.8 minutes.

I am unemployed. I no longer have a job. Why? You guessed it. Seizures. Now that they have increased, I am unable to work. I cannot stand or help people without having seizures. It's been tough, not having an income anymore, but I am lucky to have such amazing parents who support me when I need it.

Yesterday I was having some seizures at my sister's house. I knew I needed to swipe my magnet, but I was nervous because I wasn't sure if I would be able to feel it. I had stopped feeling it months ago. However, I decided to swipe it, and lo and behold, it worked. I went into a coughing fit for a minute and it was fantastic! I took one of my "seizure stopper" pills (Lorazepam), and they stopped. That was a little victory right there. I have learned to take any time without a seizure as a happy time. That is a good thing!

Pity. It is something I extremely dislike. When I have a seizure and someone gives me the, "Oh sweetie, I am so sorry!" look, or even when someone verbalizes it. That is something that bothers me because yes, I have epilepsy. I have seizures, but there is nothing I can do about it. I don't need someone feeling sorry for me. In fact, it brings out the insecurity that is already there from having to go through all this. I have to live with it everyday.

I have mentioned her before, but my best friend is amazing. She doesn't care that I have epilepsy. "Oh, Sara's having a seizure. It doesn't matter." That is what she thinks. Obviously she cares that I have seizures. It isn't something she is happy about, but she accepts me for who I am. She respects my wishes and doesn't stare at me while I am having a seizure. She keeps doing what she is doing. For example, last night we were getting into her car to go for a drive, and while I was talking, I stopped and had a seizure. She saw, and she just got into the car and waited. When I finished, I hopped in and we just laughed. It wasn't a big deal! I love that she makes me feel like I am not a freak and that I am a normal person who has her own trials to deal with.

As I go through this journey with epilepsy, I learn new things everyday, including things about myself. I have learned how strong I can really be.