Hello Readers! This blog post is coming to you from a very large nest of pillows & blankets on my living room couch! Today I’d like to share some of my experiences with calling in sick to work when I have felt a seizure aura. I’d also like to touch on how much information is appropriate to divulge in these cases? As an employee, we want to be looked at with trust; that we are able to do our job well and make responsible decisions with our time off. As someone with Epilepsy, we want our employer to be understanding of our condition & to allow us the time off we need.

So, where do we draw the line? How much information about our disorder to we divulge to our employer? Is it ‘ok’ for our employer to ask us to stay at work, even though we feel an aura?

To start with, I’ll explain how my morning went. I woke up at 5:00am this morning. While getting ready, it is not uncommon for me to feel an occasional “twitch” as I call them. This is an unconscious movement of some of the muscles in my body or a sort of “tick” or “blip” in my head. With my diagnosis of Idiopathic Generalized Epilepsy with tonic-clonic (grand mal) seizues, this can happen during the times I am just waking up and just falling asleep. This morning however, I was paying close attention to my twitches since I had my flu shot yesterday. A few times in the past, my flu shot has given me a seizure aura. Because of this, I chose to get my flu shot yesterday; a day that I was not scheduled to work. Yesterday I felt completely normal, and was hoping that this year my flu shot would not affect me. I drove my car to work & clocked in at 6:30am. At around 6:50am my seizure aura became more aggressive, and since I was still the only person at work, I called home. I let Andy know my plan: I was experiencing a seizure aura, my two co-workers would be in at 7:15 and 8:00am. Since two employees need to be at work in order to treat any patients, I needed to hold on until 8:00am before heading home. Could Andy pick me up at work at 8:00?

When my supervisor arrived at 7:15 I informed her that I needed to take a sick day after our other co-worker arrived at 8:00. I told her that I had received my flu shot the day before (the flu shot is required for my job) in the hopes that any adverse affects would happen while I was at home, instead of at work. However, things did not go as planned and I needed to head home as soon as possible to rest. (In my case, I do not have a seizure every time I experience the aura. If I am able to rest, sleep, and avoid visual/audio stimulation, there is a good chance that I will not have a grand mal seizure).

My supervisor respected my plan & was very supportive during the next 45 minutes while we awaited the arrival of our co-worker. She even asked me if there was anything she could do to help! (Not every supervisor or co-worker will act this way. Even if they don’t, please encourage yourself that you are doing the right thing by going home to rest! Your health is your #1 responsibility, and even if someone acts stressed out or frustrated because of your decision, it does not mean that you made the wrong decision).

My other co-worker arrived a little before 8:00am. I confirmed with my supervisor that I was leaving, and to expect me back at work tomorrow. I clocked out & went to meet Andy, who drove me home and got me situated in the very large couch nest that I am now writing to you from!

In a situation such as this, I would recommend calling your neurologist and leaving a voice mail with him/her. If you do not have a neurologist that you are comfortable with and you are in the Twin Cities area, I would highly recommend Dr. Teresa Tran-Lim MD at Methodist Hospital in St. Louis Park, MN. Having an ongoing proactive partnership with a neurologist such as Dr. Tran is important; they will listen to your voice mail & make sure you receive a call back. Part of empowering ourselves is being able to verbally communicate what our situation is, what our plan of attack is, and also asking for feedback from our health care providers.

I will also share with you that even though I have been diagnosed with Epilepsy for over 11 years, I have not always been able to handle a seizure aura with calm composure. It is still very nerve wracking for me, thinking that I may have a seizure. And it is still embarrassing for me, admitting that I need to go home. However, experience has shown me that I have no need to feel embarrassed about who I am. Having Epilepsy has helped form me into the person I am, and it will continue to shape me for the rest of my life. Experience has also helped me realize that if I do happen to have another seizure, I will be sad but my life will be far from over. It may be the end of a long seizure-free streak for me, but it will not be the end of the world.

So my advice to you is this: be honest with your employer. You do not need to divulge every single aspect of your Epilepsy (or any other disorder you have) and you do not need to explain to your employer how you feel about it. Stick to the facts and stay calm; explain the situation and explain your plan of action. I would be very surprised if an employer did not look at you with respect and appreciation in that situation. I also want to remind you that legally, your employer cannot force you to stay at work. They also cannot discriminate against you because of your diagnosis. If, when you are not experiencing an aura, you perform your job to the fullest, then no one can fault you for acting responsibly when you do eventually feel one coming on.

And so readers, good luck in your work endeavors! If you have an experience you’d like to share, please comment below so that we can all benefit from each other’s advice. Have a wonderful afternoon, and remember to Seize the Day!

Good Morning readers! Today’s blog post is coming to you from what many people consider the “Happiest Place on Earth”… Disney World!

When preparing for our trip here, my biggest concern was Will I overheat at Disney, after being on an airplane, and after walking around all day, in the sun, in 100 degree weather, at a different altitude than my body is used to in Minnesota?

After some diligent Google searching, I found that Minnesota is 2,301 feet above sea level and that Florida is only 345 feet above sea level. Luckily, people with Epilepsy have on average a significantly lower number of seizures at lower elevations, and so the higher elevation they climb the more likely they would be to have a seizure.

Finding that statistic greatly reduced my anxiety regarding an elevation-induced seizure. But there was still the heat, the sun, and the exhaustion to consider. In the past, while taking Topamax, my body would overheat simply from climbing up a small staircase. Today, I am no longer taking Topamax and have switched to Lamotrigine. In addition to warding off seizures and helping to improve my overall health, the Lamotrigine greatly reduced the frequency of times I find myself overheating. However, it does still happen occasionally, and I wanted to be over prepared in this area before heading to the Happiest Place on Earth!

After much deliberating at home and plenty of Google searching, here are the 4 main steps that I took to help stay cool and seizure free at Disney:

1. Meal Plan strategy for consistent nutrition and hydration

Many Disney hotels offer a Meal Plan dining option with your room package. We are staying at All Star Music & decided to include the meal plan into our package. This allows us to eat essentially for free at over 100 different restaurants/café’s all around the Disney parks & property (this includes inside other hotels and at Disney Springs shopping center!). One main benefit of this meal plan is the healthy options they offer; this includes whole grain muffins, fruits, vegetables, milk, gluten free options, and many others. These foods that our bodies crave in order to stay seizure free are many times not available at theme parks and other attractions. The meal plan dining option allows you to pick your entrée and then add a snack. So for example if you picked scrambled eggs with whole grain toast, you could include a banana as a snack to throw in your backpack and bring with you to the park. VERY convenient! (And yes, at bag check when entering the park, you are allowed to bring snacks inside). The other benefit of this meal plan is that every member of your party gets a re-fillable Disney mug (this can be filled at any of the 100+ dining plan locations). After using our mugs, we have been filling them with ice so that we have cold water to help ward off any potential overheating while walking around the parks.

2. Sun protection for your head!

The second way I am staying cool in Disney is by wearing a sun hat! The one I am wearing was found in the clearance bin at Target; it hardly cost anything but it works wonders! An excess amount of sun on our scalp, face, shoulders, and neck can be a major contributor to overheating. So I would highly recommend finding an inexpensive baseball hat or sun hat to help keep you cool under the Florida sun! Here is a photo of me, with my backpack & sun hat, ready to take on the Disney Parks

3. Plan your walking route to allow alternate inside/outside while not missing any attractions!

Another way to stay cool at the Disney parks is to take time to plan your walking route. Almost every single restaurant, café, candy shop, and gift shop in the parks has air conditioning turned on; and many of them all connect to each other inside. So plan to walk outside for a bit, then head into the A.C. and take your time cooling off while you shop for souvenirs. Many of the ride queues also have air conditioning, so if you want to hop on It’s A Small World, you can soak up some A.C. and not have to worry about getting on a ride that will jostle you around or potentially hit your head. I have been on at least 10 different rides so far, and all of them were Epilepsy-friendly.

4. Cooling Towels

The fourth and final way that we are staying cool at Disney is by using Cool Towels. We found ours on Amazon for around $6. They come in many colors and are very easy to use! A tip we received when purchasing them was to be sure you pre-wash them before ever using them. I put a color guard sheet in our washer to see how much of the color comes out during that pre-wash and was very glad I did! The color guard sheet was completely green (our towels are lime green & yellow). Once you have pre-washed your Cool Towel, hang or lay it flat to dry. After that it is ready to use; simply get it wet, wring out the water, and snap the towel between your two hands (like a whip). It will stay wet & keep its current temperature. So that as you get warmer and warmer, the cool wet towel will help keep you from overheating. We wear ours around our necks & from time to time wipe our face with them. Trust me, you want one of these! Here is a photo of Andy modeling both his Mickey Hands & his Cool Towel

If you have any other suggestions on staying cool at Disney or anywhere else, please comment below! Thanks for reading and remember to Seize the Day!