The Snarfblat

Hello Readers!

It’s been a while. October was a long month and I knew if I wrote it would be a “Moaning Myrtle” post- which I vowed to you from the beginning- to try and avoid.

First of all, thanks for reading! Every time I see someone and you comment on the blog and thank me for writing or that you enjoy it, it means a lot! I’m very flattered and humbled to know that so many of you are learning from, or at least enjoying, reading about This Epi(lepti)c Life.

Since it’s been a while since the last update, let’s do a quick recap.

·        8/30/16- Dixie Chicks Concert- AKA Best. Night. Ever!

·        8/31/16- Stressful Board meeting interrupted by Clarissa’s grand mal seizure- AKA worst. Night. Ever.

·        8/31-9/2/16: Hospital stay at Stormont Vail consisting of many tests, all of which came back normal.

·        9/5(ish)/16- follow-up with Dr. Sides- offers to prescribe Clarissa anti-seizure med. I decline because I’m fiiiine (did you hear that denial in my voice?)

·        10/26/16- Clarissa has petit mal seizure while at KSRE annual conference in Manhattan. Anti-seizure meds are no longer optional at this point. I am prescribed Keppra until I can see Dr. Welch (neurologist in Topeka) on December 4.

Ok, now that we’re all caught up- let’s dive right into Neuro day! 12/4/16

I’d looked forward to this day for a few months now, and was excited to meet this neurologist that Dr. Sides had recommended. Matt and I had both taken half of the day off work for the occasion, and my parents were driving 2 ½ hours one way from McPherson to be there, so it’s kind of a big deal.

One thing we can all agree on- doctors’ offices are SLOW. Today seems especially slow. Maybe it’s the sense of anticipation that makes time seemingly stand still, but it really seems like an unusually long time before the doctor comes in. There’s four of us crowded into this tiny room waiting for him to come in. Dad is busy looking at each of the posters that describe the different kinds of seizures, discuss meds, list state driving laws, etc. I look at some of the funny-looking instruments on the counter, asking the others what they think each of the tools does. Check out this tool à

Some of you may know what this is, but I was very perplexed as to what it was! Read on to find out!

Dr. Welch finally comes in. He’s a pretty friendly guy. We exchange pleasantries, he reviews my medications and then does a neurological exam. I can’t remember exactly what was involved, but I had to get up and walk across the room, follow his finger, push against his arm with both hands, stuff like that. Then we get to the fun part! I set on the exam table and he takes the funny looking hammer to test my knee reflex (funny how doctors always make sure to stand to the side when they do this). Then, he picks up the funny looking snarfblat! Aha! My mystery shall be solved! He smacks the round head with the heel of his hand so that they vibrate, then puts it down against my big toe and asks if I can feel it. I giggle. It tickles! Turns out, it’s a tuning fork, not a snarfblat. Sorry to disappoint the rest of you Little Mermaid fans.

Sigh. Now He asks about the first seizure. He asks about the aura, or warning signs/sensations, I experienced shortly before the seizure. “Any unusual smells, temperature changes, emotions?” Uhhhhhh. This is the first time I’ve really been asked so many detailed questions about it. Gosh, I don’t even know what it was or how to describe it. Warm panic, maybe? Fear? Nausea? I don’t know, it’s just hard to put into words, especially when I’m on the spot like this.

Fortunately we are able to answer most of the questions about timing (how long was the seizure, how long before you regained consciousness, how long before you went to the ER) since the board members took such good care to remember those details.

We go through the same drill regarding the October seizure, and move onto next steps.

“I’d like to keep you on the Keppra,” he says, “That’s a good drug”. Ok, cool, whatever. “And I’d also like to schedule a sleep-deprived EEG sometime in the next couple of months. Does that sound ok?”

I ask, “Does it seem odd to you that both seizures occurred at the same time during my menstrual cycle? Could that play a role? Maybe we should schedule the EEG during that time just to see?”.

“That’s an interesting question you bring up”, he says. He chews on that for a moment and says that it may be interesting to have the EEG during the same time in my cycle. I’ll have to call and set that up later so we know exactly when it will be.

Dr. Welch starts inching his way towards the door and says “Well, unless you have any more questions, I will see you back again in three months.”

I’m a little taken aback that we didn’t discuss the EEG or my previous test results in more detail, but I’m still pretty new into this whole epilepsy thing (plus I’m…me… so I don’t really question doctors much) so I just say okay and we go on our merry way.

And just like that, it was over.

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Humble pie. Ah, the most bitter of fruits that I ever did taste.

At this point (about 3 months) into my newly discovered way of life, my calendar is still fully booked as if nothing happened. Which, really, it should. My disability should not affect my work because I’m still fully capable to do everything I could just as before, with the exception of driving and the occasional climbing of ladders (that’s another seizure precaution). The calendar situation just makes things interesting at work since I have to go to go places a lot. An essential duty of my job is presenting educational programs out in all of the communities of Coffey County. Many of these programs take place during the work day, but not always. Since I can no longer drive, this means I get to call ahead and arrange rides to and from everywhere. Check out this pretty fly spreadsheet I make to keep track of all my rides!

We are very fortunate here in Coffey County to have a rockin Public Transportation system. You just call and reserve a ride in advance- tell them where to pick you up, where you need to go, and if you need a ride back and when. To make things better- I get the disability rate which is half price of their already very reasonable rates!

Drawbacks of public transport- they are busy! If I forget to schedule a ride until the week of or if my other ride falls through at the last minute, I’m up a creek without a paddle. Also, they will occasionally have another passenger unexpectedly. I usually schedule my rides with the expectation that we go straight there. However, sometimes they’ll have to drop someone else off on the way there and it may take a few extra minutes. This can short me on program time if I don’t allow extra, so I had to learn that quick. Lastly, they only run during regular business hours. We as extension agents often do not run on regular business hours. If I have an evening program or after school program that ends after five, I’ll have to ask a volunteer or librarian to drive me.

I recently went to Manhattan for our Annual Conference and stayed at a friend’s house instead of a hotel. After learning that said friend would be unavailable to help transport me due to a vacation, I tried to book a room but it was too late. No room at the inn. I downloaded the uber app, and told myself it was no big deal. Kylie, who was driving me up to Manhattan, asked how I was getting to campus the next morning and I told her the whole story. She said something to the extent of “don’t be silly! I can come get you!”. So then it turned into Kylie taking me, or her coworker if she was tied up.

Then I was dealing with some other stuff during annual conference that took a lot of mental and emotional energy; so I just wasn’t even thinking about how to get back and forth. I know what some of you are thinking. Be responsible. Honestly, I don’t even have an excuse. I will just say transportation is one of those things that we often take for granted, just like food. Many of us in the middle-upper classes don’t have to stop and think about where our next meal is coming from, but we know we’ll have one. Similar situation here. Many of us often jump in a car and have the freedom to leave exactly when we want, go exactly where we want, and take the roads we want to take. How crazy is that. We don’t have to take 3 different trains or buses and go by their crazy routes/schedules. We go. However, for those of us who are “transportation insecure”, it requires a little more thinking. For me, someone who has been Miss Independent for the last 10+ years of having a driver’s license, this also bears some emotional weight as well.

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Next time on This Epi(lepti)c Life: It’s EEG Time! I’ll talk about the EEG that Dr. Welch ordered and how that went. Will we finally get some answers? Find out next time.