Category: Epilepsy

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Epilepsy Awareness Month, Day 8: Wedding plans

I know, it’s been a few days since I’ve written something. But here’s a little story to go with it.

This summer, I spent two days helping at Camp Oz, a week-long camp created for kids with epilepsy. Because, you know, having an unexpected seizure while playing capture the flag at a regular summer camp can get a little awkward.

When I talked about volunteering there, someone told me about another adult helper a while back who was talking to one of the kids. The kid was lamenting the fact that because he had epilepsy, he was never going to get married. As it turned out, the volunteer (who also had epilepsy) was married, so he got to console the kid. Having epilepsy doesn’t mean you’re doomed to suffer a life of loneliness and isolation.

Why is this relevant? Because as soon as Teresa gets home, we’ll be putting wedding invitations into envelopes so they can be mailed out to people on our guest list. Stuff like this can get tedious at times, but it also shows that one more person with epilepsy can and will be getting married in a few months. You’re welcome, kid.

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Epilepsy Awareness Month, Day 2: What are my seizures like?

When you hear “epileptic seizure”, what’s the first thing that pops into your mind? For a lot of people, it’s an image of someone losing consciousness, falling to the floor and thrashing around violently. It’s understandable. But that’s only one kind of seizure. What many people don’t realize is that there are over 40 different types.

This morning, I brought the dogs outside for a quick walk before work. I usually let Sophie do her business, bring her back inside, then Berkley and I go back out for a longer walk. My head felt a little weird when we left the house the first time, but it wasn’t until Berkley and I headed down the block that stuff definitely started happening.

I think the most unusual part is that in the past, when I’ve had seizures and strange things popped into my head like this, they were there and then gone. “Now you see me, now you don’t!” Whatever it was that I was thinking… poof! Don’t need to worry about that thought process ever again.

But this one image during our walk stayed. I was able to cling to it, remember it, and I kept thinking about it until we got home. I had recently started keeping a seizure journal on my phone just to get an idea of how often they’ve been happening recently, but I was also including other details: what happened, how long it lasted, how it felt, etc. The fact that I was able to remember that image, that thought process from the walk… I wanted to jot down some notes about my seizure as soon as we got back.

So this happened:

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Gratitudes 2018, Day 22

Sorry, no pictures this time, but I’ve got another theme that I can use to put together my list of gratitudes today.

  1. Epilepsy Foundation of Minnesota. When I was job hunting last spring, I felt inspired to look into volunteering for some kind of epilepsy-based organization. Maybe I’d get a job out of it, maybe I wouldn’t, but trust me on the sunscreen. Wait… that’s not right… Maybe yes, maybe no, but I wanted to try and volunteer. After all, it’s something that’s been close to my heart for a long time. And my head. Definitely close to my head.
  2. Tammy Sammon. When I looked at their website, I could choose up to three groups to potentially volunteer for, one of which was the creative arts program. Tammy is the coordinator for that group and… well, it took a while to connect. After waiting a while to hear back, I finally got a response. However, she was preparing for Camp Oz, a week-long camp for kids with epilepsy. Next, she was at Camp Oz. After that, she needed to recover from Camp Oz. So it might have been a couple months overall before I was finally able to start volunteering with EFMN.
  3. Camp Oz. I took two days off from work this summer to volunteer at the camp. I tagged along with a group of 11- and 12-year-olds as they went through their daily activities and even got to participate a few times. I helped gather wood for a fire so they could do some cooking, I offered suggestions as they prepared a skit for the campfire on Thursday night and I even got to do a little archery. I managed to hit the second yellow ring on the target with my second arrow (there are three yellow rings, the smallest of which is the bullseye). So I set a really high standard for myself that I was never able to match. Just ask the arrows that ended up in the ground in front of the target.
  4. Archery. We had a really small compound bow at home when I was a kid, which is why I knew I should prompt the camp counselor about having the odd-colored feather pointing to the outside instead of the inside (having it rub against the bow when you shoot would send the arrow… I’m not sure what direction it would go, but definitely not straight).
  5. The EFMN Adult Support Group. It meets once a month and the meeting was tonight. I usually go to provide support as opposed to needing it—I came to terms with having epilepsy many years ago, but being able to tell people about my experiences and making them feel more comfortable is a good feeling for me, too.
  6. Anti-seizure medications. I want to express a great deal of gratitude for the meds that kept me seizure-free for about 15 years. Sure, it’s unfortunate that I have to refer to them in the past tense, but even with the stuff I’m taking now, the fact that I can function well instead of being stuck having blackouts or major convulsions… I’m definitely grateful that they exist and that I’ve had access to effective ones.

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Seizures and bonus features

I was seizure-free for about 15 years. Now I’m definitely not anymore.

What’s strange is that even though I’m having them more frequently than in the past, they’ve been small ones. Simple partial seizures. I’ll see some random image in my head or be unable to put words together in a sentence because they get all scrambled up in my brain. Sometimes I just feel a surge that’s kinda like blood rushing into your ears. All very hard to explain, but all very minor compared to blackouts or full-blown grand mal seizures. In that sense, I’m extremely lucky.

After so many years, I finally needed to change my medication back in October, so the doctor and I decided to increase the dosage of one and leave the other. That hasn’t solved the problem: I had two more seizures over the weekend. Only the second one was noticeable because I was having a conversation and then all of the words kinda swirled away. Well, not all of the words—I was still able to sit there swearing under my breath.

So now it’s time for another change, but instead of only adjusting what I’m already taking, the doctor is prescribing Vimpat. I’d never heard of it before my last appointment, but… well, if the doc thinks it’ll work, I’m hoping he’s right. The part that’s a little bit concerning is that before starting this medication, I needed to get an EKG. (Regardless of what you may have heard from women in any of my prior relationships, I do in fact have a heart.)

I had the EKG done this morning and the doctor signed off on it, but the results showed an abnormality. No one elaborated, just said that I needed to make an appointment to come in later this week. Which thankfully means I’m probably not gonna drop dead from heart failure in the next few days.

More seizures and now possibly heart problems. But instead of panicking (which seems like a reasonable option at this point), I still feel very lucky. Things could be much worse. For one thing, I could drop dead from heart failure NOW! … Or maybe NOW! … How about NOW! Nope, still alive and still feeling very lucky.

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Day 30: Giving thanks

Well, I started the month like a lion and I’m ending the month like a much smaller lion.

roar.

We’re not far past Thanksgiving, so for this last day of Epilepsy Awareness Month, I thought I’d focus on giving thanks. Focusing on the bad parts of having epilepsy pulls my attention away from all of the blessings I have in my life and there are a bunch. I’m thankful for…

… My friends and family. I have an amazing support system that is willing to help me out as much as they can. If I have to leave a gathering early because I don’t have my medications, they understand. If I lose my driver’s license due to seizures, there are people who can drive me where I need to be.

… My driver’s license. There are plenty of “one in 26” people who have uncontrolled seizures. If you have an involuntary loss of consciousness, your license gets suspended for a couple months (and the time restarts after each seizure, so you may not be able to drive for a loooooong time). The length of the suspension was six months when it was happening to me, which sucks when you’re in your mid-20’s.

… Epilepsy treatments (medication, surgery, etc). They don’t always work, but if they didn’t exist at all, I’d be one of many with uncontrolled seizures (both in frequency and severity).

… My blog. Sometimes it feels like I’m shouting into the void when writing in here, but if one person reads one post and feels better afterward, it’s been worth it.

… Electricity. My computer would look exceptionally weird sitting on my lap and not doing anything.

… Sunsets. A few days ago, the sun reached a certain point on the horizon and there were fluffy clouds in the sky, so it was lit up in pink and purple and all sorts of colors. At that point, nothing else mattered on this list. I wasn’t using electricity for my laptop, I wasn’t worried about epilepsy and seizures, I was just watching something beautiful.

Yes, I have epilepsy. Yes, it affects me in ways both good and bad. It has not stopped my life. It has not stopped beauty. It has not stopped my ability to be thankful for everything around me.

So thanks to you, fair reader(s). I hope you’ve had a good Epilepsy Awareness Month, but whether you’ve learned anything or not, I hope you remember to be thankful.