Happy Purple Day, Everyone! Today is a day we come together and wear purple to celebrate & promote Epilepsy Awareness and Research!

Where is Purple Day celebrated?

Internationally! Dozens of countries on every single continent wear purple in an effort to increase awareness about Epilepsy worldwide.

When was Purple Day started?

Cassidy Megan of Nova Scotia, Canada launched Purple Day in 2008! Since then, she and others with Epilepsy have encouraged supporters worldwide to support Epilepsy research. Cassidy’s goal was to increase communication regarding Epilepsy, in an effort to dispel myths surrounding the disorder and prove to those suffering from seizures that they are not alone.

Can I participate?

Of course! Whether or not you have Epilepsy, please wear purple on March 26 each year to help us promote Epilepsy Awareness. Share photos on social media of yourself and others wearing purple, and use hashtags such as #epilepsyawareness #purpleday #purplepride and #epilepsy .

The day is young and there’s still time to show your support! So go grab anything purple and start snapping some photos! Thank you for your continued support! Have a fantastic Purple Day and don’t forget to Seize The Day!

Happy Friday, everyone! It is officially the weekend!!!

Normally, I would be cracking open an ice cold can of Diet Coke right about now. I would be enjoying it’s crisp flavor, cool carbonation, and the hum of the caffeine easing its way through my system.

However, one month ago today I gave up Diet Coke.

Cold. Turkey.

That’s right! I said Goodbye to my delicious all-time favorite beverage, and Hello to better health!

So, why did I decide to give it up?

-I was sleeping terribly and heavily relying on sleep aids in order to get the rest that I need

-I was drinking around 7 servings of Diet Coke daily. (Honestly! 7 servings!)

-It became a habit, and something that I relied on

-Caffeine and Aspartame overuse have contributed to my seizures in the past, so it’s important for me to stay away from them as much as possible

-I didn’t think that I could give it up.

-Diet Coke has a LOT of artificial sweetener in it which tricks the body into thinking that it’s processing sugar. This can cause unsteady blood sugar; a contributing factor to many of my previous seizures.

Those factors all pointed to me having an addiction problem. I truly did not think that I could give it up… that told me that I definitely needed to! I feel that it is my responsibility to stay as healthy as possible, and a big part of that is taking care of my own nutrition. It’s important for me to do this not only for myself, but for my family as well. They have gone out of their way for years to help make my living with Epilepsy easier on me. What kind of Thank You would I be giving them if I continue to neglect my health by overindulging in Diet Coke?

A few people have asked me why I don’t just have 1 per day or 1 per week and draw the line there?

Well… unfortunately I have tried that before and I wasn’t successful with it. I know that I will be able to handle those limits for about 2 weeks, and then I will lose total control over it. I’ll be right back where I started.

So, cold turkey it was! And you know what? It was actually really easy! I only had 1 headache after kicking the habit. Only ONE!!

And so, I’m going to keep going strong. My plan was to give it up for one month in order to prove to myself that I could live without it. Now that I’ve accomplished my goal, I’m going to continue on without it! I’m feeling great, sleeping much better, and still haven’t had any seizures!

Is there anything that you’ve been overindulging in but are struggling to give up? I hope that this post has been inspirational for you. Feel free to contact me with any questions or if you’d like to share your story!

Thank you again for tuning in and don’t forget to Seize The Day!

Happy Sunday Everyone!

Today I’d like to share an article that was posted by My Epilepsy Team.

The article, 9 Ways To A Safer Home With Epilepsy, outlines 9 main ways to make your home safer while living with Epilepsy. I found it to be very instructive and applicable for a wide variety of homes/lifestyles!

The ideas are all very easy to incorporate into your daily lifestyle. None of them require a large overhaul of your home. It’s really just small changes to keep in mind, that could make a world of difference when a seizure occurs!

I’ve also added 4 of my own tips that I personally use. These are listed below, after the 9 outlined in the article.

Enjoy!

 

Here are the 9 tips from the article:

1. Cook in the microwave: Whenever possible, use the microwave as your main cooking method. It shuts itself off automatically and runs less of a risk of burning/scalding you when removing food. If the oven/stove is a MUST, then use oven mitts at all times and make use of the back burners of the stove. Also, have someone around whenever possible if you do not have a microwave and must use the oven or stove.
2. Use a food cart on wheels: Rather than carrying hot plates/pans/food trays from the kitchen over to the table. The cart on wheels will roll away if you fall during a seizure. Scalding dishes could shatter when dropped and not only cut you but also burn you severely.
3. Opt for carpeting: Wood and tile are very “in” right now, and easy to clean. However, carpet is much less slippery and will help cushion your fall during a seizure.
4. Use plastic containers rather than glass: In case of dropping a dish during a seizure, plastic containers won’t shatter and break. Glassware dishes will break and run the risk of cutting you if you happen to fall into the shards while seizing.
5. Install water temperature controls: These devices can be installed by a plumber and can keep you from getting burned if a seizure occurs while you’re in the shower. (I hadn’t ever heard of these devices before, but I’d like to look into one now!)
6. Do not lock your bathroom/bedroom doors: If someone needs to get to you during a seizure, an unlocked door will allow them to get to you more quickly. (My very first seizure occurred behind a locked bathroom door, and my dad & younger brother had to break the door lock open to get to me!)
7. Re-learn how to take a bath: If you take baths instead of showers, only fill the tub up with a few inches of water and then use the handheld sprayer to wash yourself. However, if you have frequent seizures, please be sure that someone is very nearby every time you bathe/shower.
8. Use padding: Special padding on the corners of tables/furniture/counters can greatly help protect you from injury in case of a fall during a seizure.
9. Avoid stairs: Living in a home or apartment without stairs eliminates the risk of stair injuries when falling during a seizure

I love how thorough and creative those tips are!

Now, here are 4 additional tips from my daily life that I’d like to add to the list:

1. Keep your phone close: I charge my phone at night and so it is attached to the wall. Arrange your room so that you can have an ottoman or night stand next to your bed. That way, if you feel a seizure aura coming on, you can call someone for help while still remaining in the safety of your bed.
2. Use a body pillow: Andy bought me a large body pillow and I use it as a bumper between myself and the edge of the bed. It’s the same concept as a baby bumper in a crib and honestly it really works! It doesn’t even let me roll over in my sleep so I feel more safe about not falling off the bed in case of a seizure.
3. Sit down: In addition to feeling exhausted most of the day, another reason to sit down frequently is to minimize the distance between yourself and the floor for when you do have a seizure. So, while you’re drying your hair, putting on makeup, brushing your teeth, talking on the phone, putting your shoes on, waiting for something to cook, etc… just sit down! It doesn’t take up any extra time and will help you in the long run.
4. Use emergency pulls while exercising: I don’t have a treadmill or anything at my home, but when I do use them I make sure to attach the emergency clip to my shirt. These clips are attached to the workout machines (usually by a magnet) and when the magnet is detached (from someone falling over or stepping off the machine) the motor will automatically stop. Give it a try next time you’re on one, you’ll be amazed at how quickly that little string can stop the entire machine!

Well, that’s all for today! If you have any other daily tips/tricks for a safer home and lifestyle while living with Epilepsy, please feel free to contact me and let me know! I’d love to hear what ways others have come up with to help safeguard themselves.

Thanks again for reading and don’t forget to Seize The Day!

Happy Saturday, Everyone! For many people, the weekend means spending time with family and loved ones. So, to pay homage to my wonderful family, I wanted to share with you an interview that I conducted with Andy and both of my parents.

Epilepsy, along with many other disorders, tends to bring everyone’s focus solely to the person that is diagnosed. How are they feeling? What are their side effects today? What were their most recent test results? Did they take their medication on time? How is their diagnosis affecting them socially/emotionally/spiritually? Are they happy? Are they depressed? How are their most recent injuries healing? If they lost their license, what time do they need to be dropped off/picked up?

The list goes on and on…

But what about how the caretakers are handling everything? How are THEY feeling? What do THEY need?

It took me quite a few years to realize that even though I don’t want it to, my Epilepsy DOES affect my family and those closest to me. I did my best to push people away so that I could “handle” everything on my own… but you can’t push people away that much when you rely on them to drive you everywhere.

Bottom line, I was pretty selfish. I honestly could not see how much my Epilepsy affected everyone else.

Today, I have a bigger perspective and am incredibly thankful that my parents were willing to stick with me while I grew up and grew out of my attitude.

I do not have children of my own yet, but I have come to realize that many times my Epilepsy diagnosis was probably harder on my parents than it was on me! They have held on to me during seizures, tended to my wounds, helped me unwind insurance puzzles, sat with me in the Emergency Room, driven me EVERYWHERE, reminded me to get back on track when I was eating/drinking things that I shouldn’t be, comforted me when I felt that I didn’t want to live like this anymore, and SO much more! They couldn’t just put their lives on hold when I was diagnosed, so instead they just figured out a way to carry the weight of my diagnosis while still continuing on with their own lives.

Andy joined our lives after I had been living with Epilepsy for about 8 years. Unbeknownst to me, he already knew I had Epilepsy when we went on our first date! I was worried that my diagnosis would be a deal breaker in the world of dating (and for some people, it was a deal breaker), but Andy accepted me unconditionally. He is the most positive person that I know, and he always finds a way to turn my road bumps with Epilepsy into something positive.

There are not enough Thank You’s in the world to show Andy and my parents the appreciation that they deserve. So instead, all I can do is take excellent care of myself and share my story to make someone else’s life with Epilepsy easier and more positive.

To gain an even better perspective on how Andy and my parents feel about my Epilepsy diagnosis, I decided to ask them all a series of questions and then share their answers with you! I hope you learn as much from them as I did! Please feel free to contact me with any questions that you may have.

Thanks again for tuning in and don’t forget to Seize The Day!

 

Below is the interview Q & A. Answers are separated for each interviewee; A = Andy, D = Dad, M = Mom

1. How did you feel/what were your initial thoughts when you found out that I have Epilepsy?

A: I really think anything of it. I tried to do a little research on it once I knew, but to me, it makes you no different than anyone else.

D: I was thinking What? How? I knew about Epilepsy but didn’t really know details so I was afraid for you.

M: I was so afraid for you and sad for you. After your first seizure, when the neurologist you saw said it was probably just an isolated instance because they couldn’t find any reason for it, I started researching causes of seizures, and of course in researching seizures you see the word Epilepsy a lot. I prayed it wouldn’t happen again, I didn’t want you to have it. It seemed too big, too scary, and I didn’t want you to have to face that right at the time when typically young people are becoming independent.

2. In your opinion, what is the worst part about Epilepsy being a part of our lives?

A: I think not really knowing when the next episode might hit. I know that when a seizure may happen, it can be really scary not knowing when and where, we just do our best to take the necessary precautions to be as prepared as we can be.

D: In the beginning, trying to balance your meds and not knowing how/if we could control it.

M: For me, the worst part is the unknown and not knowing when the next one will come, and if you will be hurt, and with each seizure the sadness I’ve seen as you realize what happened. When you had your first seizure, that is when I started having my cell phone with me at all times, I still do. Each time the phone rings with a number I’m not familiar with, it could be a hospital or ambulance telling me ‘we have Bailey here, she’s ok, but she’s had a seizure’.

3. In your opinion, what is the most positive thing about having Epilepsy as part of our lives?

A: That you have started this blog as a resource for others who are affected by epilepsy so they can read about your experiences and reach out for support. A lot of the time, the medical community in my opinion tries their best to relate, but inherently falls short because they don’t always have personal life experience with it. You have a history with it and experiences no one else has that you’re willing to share.

D: Any time people share pain together or go through something together, you grow closer. And I got to drive you around a lot which was good time spent together.

M: Because we know first hand some of the obstacles in place for those living with Epilepsy or any disease/chronic condition, we have compassion and acceptance and understanding for others and don’t take for granted many of the things that we know can be gone in an instant. I think we have a good sense of gratitude, and want to help others to the best of our ability.

4. How has my Epilepsy disorder most directly affected you?

A: It’s made me more aware of triggers and because of that hopefully a better partner. I try to be a good protector and learning what can cause or help prevent a seizure has helped me to hopefully be that better partner for you.

D: Watching your own child go through something is really rough, but it makes me so happy watching you rise above it.

M: I think the dynamics between moms and daughters – especially at the time in life you were diagnosed – is already a difficult one as moms have to learn to let go and let their daughters forge their own way, and for a time, even in the best circumstances, lines are crossed while we transition into and figure out our new roles. When you were diagnosed during that time, even though I did all I could to help, I made a lot of mistakes in my quest to help you ‘fix’ it, or to make things easier. But we muscled through and I learned a lot about letting you own this, and how to support you better without taking over. And you learned how to let me help without assuming I was taking over. Another way it affected me directly, is that I have been committed to doing what I can to be available to help you. And since I was going through a job change and also caretaking my parents, I made the decision to change careers and learning something new that would allow me the flexibility to work from home and during hours I could control so that I could assist when and where needed.

5. What do you wish you could tell other people about Epilepsy?

A: That it may initially feel very overwhelming and you’ll have trials and tribulations ahead of you, but it’s manageable and can even be a blessing. You’re turning your diagnosis into a way to help others which I think is one of the best things you could have done. When life gives you lemons, you start a blog!

D: Epilepsy is like a puzzle. Be patient, work through it, and you will overcome it.

M: That it can strike anyone, at any time, and when it does, the person diagnosed is still the same beautiful, smart, loving, ambitious person they already were, but now they have some hurdles that many other people don’t have. I’m happy there are awareness campaigns, and I’d love to see more money funded for research, ultimately leading to cures or prevention possibilities. Before your diagnosis, I had no idea all of the various types of seizures people have. I had no idea about the many side effects of medication. I had no idea of the stigma some still place on those who have it. And for the type you have, I had no idea how scary it can be. People having a seizure need compassion, support, acceptance, not isolation and stereotyping.

6. Since being diagnosed with Epilepsy in 2006, what physical/emotional/intellectual/spiritual changes have you noticed in me?

A: Physically and emotionally I’ve seen that it can be draining, but you’ve always bounced back really quickly. You don’t really let it get you down, which I’ve noticed you’ve transitioned those feelings into your every day life. You take the lessons you learned from your epilepsy and turn them into every day victories.

D: I’ve liked watching you grow more and overcome your Epilepsy while you share about it with others.

M: So many… Physically, each time you have a seizure where you are injured, it leaves little victory badges… broken teeth that are fixed, a small scar above your lip, sore muscles, abrasions, bumps and bruises. You are strong and are doing a good job staying healthy and active and keeping your body in good condition, which I think helps to prevent even more serious injuries. You watch your sleep and fatigue, and you are mindful of how that affects you.

Emotionally – huge growth since you were diagnosed. There was a lot of anxiety over this, and you’ve taken proactive steps to not let the anxiety own and dominate you. In addition to your own anxiety and fear, you had to field the reactions and anxiety of others, well intended as it was. And you kept going – when you had the seizure at college out in public and were injured and people were gathered around you and some took photos… that was mean and cruel, even if they didn’t mean it to be. Someone else may have just decided they didn’t want to risk that again and leave. You held your head up and went back to class, went back to work, went back to life. That takes a lot of emotional strength. You’ve learned how to read yourself, how to handle yourself – things that each of us has to do at some point, but the load on your shoulders was made instantly so much heavier with the diagnosis. I’m proud of what you’ve done. You have become much more self aware.

Intellectually – You’ve always been very very smart, and organized. Booksmarts/facts versus wisdom aren’t always the same thing though, and you’ve become more wise since your diagnosis. Using facts and speculation along with self awareness and a broader view of things has been cool to watch. You’ve found ways to use your intelligence and combine it with your compassion to help others, to further yourself and continue learning, and I am confident that will continue.

Spiritually – You’ve absolutely grown spiritually. At at time when some would shun their higher power, you’ve accepted that God has a unique plan for you, even if you wish it didn’t include certain parts of his plan. You’ve accepted it, embraced it, and are using it for good.

7. Are there any ways that you wished I was able to handle my Epilepsy differently?

A: I think that you have handle your epilepsy extremely well since I’ve known you. There’s nothing that I would change about how you’ve handled your Epilepsy.

D: If I think you are not staying in balance the way I think you should, then I wish you would eat/sleep/diet better.

M: No, I believe you are doing great and have found a balance that allows you to prioritize self care and epilepsy management and advocating for yourself while still living a productive and successful life and now you are blogging, becoming more of an advocate, and I’m really in awe of how you handle it. I’m not sure I could do half as good.

8. What is the most difficult (stressful, frustrating, painful, confusing) part of being the caregiver for someone with Epilepsy?

A: It can be stressful when you’re potentially on the verge of a seizure, frustrating that we can only control some parts of it, painful to see that you’re worried about if/when the next one might come and confusing when trying to find a reason for why this happens, but that’s when we just have to trust in God that everything happens for a reason and work through it together.

D: Just the unknown. Are the meds working this time? When is the next seizure going to happen?

M: Not being able to take it away or prevent it from happening, not knowing when it will happen, watching you have a seizure is so very scary. Knowing others have been less than kind, or that discrimination has taken place, or that there aren’t sufficient laws in place to protect your ability to have all of the healthcare resources… all of those are difficult as a mom alone, but as a caregiver, it is hard too.

9. If you had the choice, would you change the fact that I have Epilepsy? Why?

A: I would love to take away your Epilepsy, but think that it’s a part of who you’ve become. I think that God makes each of us in his image and even though we don’t always know the reasons why, he has a reason for everything. I think that you taking the initiative to start this blog as a resource for others is possibly one of the best things that could happen from you having Epilepsy. I think if your Epilepsy was taken away, the Epilepsy community would be losing a strong warrior and advocate.

D: I’d take it away from you just to release you of the stress of the unknown.

M: Yes, if I had the choice, I would choose for you not to have it. The obstacles & circumstances it has placed in front of you – I would choose for you to not have had to experience them. I’m incredibly proud of how you rise up and navigate it and have determined to not let it hold you down. Several weeks ago, in the turmoil of our country’s political climate, Senator Elizabeth Warren was chastised and dismissed for her passion and desire to have her point understood. The phrase ‘nevertheless, she persisted’ was coined. The first time, and everytime, I hear that, I don’t think of Senator Warren, I think of you. You’ve had so much to handle, nevertheless, you persisted.

10. Is there anything else you’d like to share?

A: I think that you’re very brave for taking what others may deem a negative and turning it into a positive force. It can be easy to get down about anything and everything and it takes a strong person to see the silver lining and that’s what you’ve done. I’m super excited to see the person that you become and glad that I get to call you my partner in life.

D: Your sharing about it and informing people with your blog is very cool and a really good thing for someone who is just recently diagnosed or has had a seizure for the first time. It would be a good thing to hear from someone who has already gone through it and knows what to do / not to do.

M: I have so much to say, I don’t even know where to start. You are just the coolest person..

Hi Everyone and Happy Sunday! This beautiful warm weather here in Minnesota has inspired me to write a blog post about ways to lift your mood. There have been many times over the past 11 years living with Epilepsy that I have found myself in quite a funk.

Sometimes, I have been able to pinpoint why I’m upset. Maybe I just lost my drivers license again or maybe I am feeling like I’m a burden to others and I never get just one minute to myself.

Other times, I haven’t really been able to figure out why I’m upset, I just AM.

So, when these moods happen, it’s important for us to be able to pick ourselves back up and put ourselves in a better mood. Helping ourselves gain perspective and see the big picture can go a long way to feeling much better about our situation.

So, here is the list I came up with of 35 Ways to Lift Your Mood!

Write in a Journal

Bake cookies

Visit a friend or neighbor

Listen to music

Workout

Clean out a drawer or closet

Go to a movie

Spend some time with nature

Take a nap

Draw or paint

Go for a walk

Visit your local humane society

Plant some flowers or vegetables

Do some volunteer work

Donate to a good cause

Call a friend

Pray

Read a book

Take a bubble bath

Walk around the mall

Discover a new hobby

Write poetry

Rearrange your furniture

Feed some ducks

Paint your nails

Look through old photos

Plan a vacation

Go to a zoo or aquarium

Make a snowman or sandcastle

Try a new restaurant

Take a class

Try your hand at a new recipe

Wash your car

Get a haircut

Go for a swim

 

Do you have any other suggestions for ways that you lift your mood? I’d love to hear what you’ve come up with! Contact me with any suggestions you have and don’t forget to Seize The Day!