Thursday, February 26, 2015

NY Daily News Article

I couldn't be happier to have seen my surgeon for these photos. 

An easy read article for just about anyone. I'm very satisfied that the author was able to put my story with the RNS in simple terms so everyone can learn in a brief read. 

No need to take out your thinking cap.  Just sit back, relax, and enjoy!

Wednesday, February 25, 2015

Spreading the Knowledge

A friend of my parents had been aware of what was going on with me, having frequent seizures but not the "regular seizures," meaning grand mal. She told my mother that one of her friend's children in high school has been "zoning out." She passed on my mother's phone number to talk about what seems to be similar to what happens to me.

On the phone the girl's mother said that she has been zoning out or not paying attention sometimes and then just goes back to normal. She had visited her regular doctor who said nothing is wrong. When I heard that, I understood. How can you put such strange feelings into words?

My mother explained what happens to me when I have a seizure using the descriptions I have picked up over time. The deja vu, the day dream feeling, seeing what is going on but not comprehending it, recalling old feelings, dreams, and scents. These were not all occurring when it came to this high school girl, but enough to sense a similarity.

I recommended that she should see my neurologist at NYU. She got an appointment where she was asked to come in for a video EEG to get direct answers immediately.

Answer: Epilepsy.

We were sent a very positive and grateful message thanking us for sharing our information, our thoughts, and suggestions. I consider it a success. Pay it forward.

Today, My Birthday, 2/23/15

I had a fantastic weekend. For my birthday my boyfriend took me to the museum of natural history and then I got to dress up for a nice dinner and show. If you haven't seen Avenue Q and you are over 18 with an open sense of humor and can handle some inappropriate jokes, I definitely recommend it. It was a nice little escape from the regular day to day living.

I also got a great gift from my parents. Despite the new watch and beautiful bracelet, what I appreciated most was them giving me a children's book that was a great analogy of where I am at in life. It was a way to show their support and share that they are proud of what I've gone through and support me with my many decisions to come. 

I stopped in the Epilepsy Center for what I thought would be a brief time for a few photos; boy was I wrong. I was thrilled to see my surgeon. I hadn't seen him since my post surgery check up. He never ceases (or seizes in this case?! :)) to amaze me. He asked how I've been doing, and I explained my decision of really focusing on my health now rather than laying off of it and coming back in a year or two. It was comforting to know I had his support along with others.

Who knew I was also going to see the nurse, my neurologist and my RNS neurologist. I just wanted to ask for a team meeting while everyone was there! 

I got hit by a proud moment when leaving. My surgeon told me that though he's not my doctor anymore, I can still contact him if I need help or have a question. I replied, "you will always be my doctor. You are the one who started me off on a new foot and are just as much a part of the team as the others. I can't thank you enough for all you've done."

His response (something along the lines of): "you are the one who is at the top. You took the chance and went through with all of this and I am grateful for having you as a patient. It is not about what I did for you, it is about what you do for yourself to improve"

Today's status:
6 days seizure free, thankful for a birthday full of love and caring

Hopes for the Future:
Bring a recording device every time I go to see my surgeon. His humble explanations are amazing. 

Thursday, February 19, 2015

Today, 2/19/15

Perfect fortune for me. Simple reminders like this keep my head up with a bit of a push to move forward towards success. 

Today I was able to spend some time with friends. I got to catch up with them about how I've been doing, but more importantly we just had casual conversation and talked about plans for the near future. We talked about taking a trip together, wedding plans, and birthday celebrations. It felt good to go back to my normal self in talking about fun things to do rather than how I'm not sure if I'll be healed or recovered by then.

When that started before the surgery, my social life quickly faded. It's hard to keep a steady social life when your friends are ready to head to the bar or have a big gathering and you have nervous thoughts about what is to come during or after the surgery. As my surgery was getting closer I had two nights where I really decided to have fun and be me, not knowing what the future would bring. I'm glad I did that, but it was definitely difficult going from fun party mode to a lack of social time. Luckily I have some great friends who I was able to keep in touch with and visit with, and now that I'm slowly but surely coming back, I'm even thrilled to go out to dinner with friends. 

Now talking about these plans for future dates, I can't predict what stage I will be at, but I've come to have hope that I will be able to have a social life full of fun and enjoy myself again like I used to. 

Today's Status:
2 days seizure free and smiling!

Hopes for the Future:
Continue to keep moving forward. "It is a rough road that leads to the heights of greatness."

Tuesday, February 17, 2015

My Interview with

It is truly amazing to have the opportunity to spread the knowledge of life with epilepsy along with the new technology to prevent seizures. I am looking forward to continue spreading awareness!

CyborgRx: How Smart Implants Could Change Medicine

Sunday, February 15, 2015

Today, 2/15/15

I realized today that while appreciating other people's advice and opinions, sometimes all I want is the advice of someone similar to myself. Someone who has gone through what I have and is experiencing or has experienced my way of life. I need to keep reminding myself that I am the one walking in my shoes, and I need to continue to be strong and make decisions to benefit myself.

Today's Status:
1 seizure in the morning, very tired all day, and rather nauseous

Hopes for the Future:
Stay strong and carry on.

Friday, February 13, 2015

Today, 2/13/15

Friday the 13th and I got an empty fortune cookie. Perhaps 2 negatives make a positive?

It's a good thing I still am feeling positive. I had the opportunity to speak to someone interested in the surgery and RNS. Whenever I tell my story and my possibilities for the future, I get a thrill talking about it. I love telling about my past, but even more so I love talking about what my goals are and why I made the choice to go through the tests, surgery, and RNS implant.

Looking back at my past, the memories are so clear when it comes to living a life with epilepsy while growing up from a teenager to an adult. The difficulties I've gone through and the roller coaster of experiences is something that I want to make others aware of. I want people to be aware of what some people with epilepsy go through and this is why we need the research. I also want doctors and those interested in the technology to use me as one who is willing to go through changes and studies in order to prevent others in the future from living a similar life that I did.

Many efforts have been put in to see what changes can be made to give me a seizure free life. There have been a series of positives and negatives, yet I do not regret anything I have gone through because it has shared knowledge with those who make a difference.

In having a goal of a seizure free life, there is unfortunately a possibility that I may continue to have seizures for the rest of my life. That does not mean my goal was not reached. My goal of a seizure free life is not only for myself, but for everyone else who goes through it as well. Take the studies, reactions, and all other information learned from my experiences and spread the knowledge to help others live their lives seizure free. If that happens to take a step towards a cure for the future, I consider my goal reached.

Today's Status:
2 seizures, and an increased dose in medication. I feel my stress slowly fading as my decision is becoming more clear.

Hopes for the Future:
Help relieve others from the experiences I've been through.

Thursday, February 12, 2015

Today, 2/12/15

With the big choice I have in my lap waiting for my decision to be made, I've been thinking who I can ask for their thoughts. The doctors, my family, my boyfriend. It is helpful in that I am able to consider some things that I haven't thought of that others bring up as a point of interest. The doctors share their intelligence, my parents talk about how the seizures and changes affect my daily life, and my boyfriend talks about my hopes and goals for the future. All of which I have found important.

But, I have realized that there are some things I need to take into my own hands and make the decision on my own. I am one to listen to others waiting for them to share what they think my decision should be and go with it. But there comes a time when it is about me and what I want for myself. I needed someone to tell me that, and I got that today. I learned that from my boyfriend. He reminded me today about reaching my personal hopes and goals, yet he added something important: only I can accomplish doing that.

While I am glad I asked others for their thoughts, as it helped me think about things that didn't come to mind on my own, I noticed that it is my time to make a decision on my own. Nobody else will be standing in my shoes to live through the results of the choice made.

To focus on my present life being able to return to work with minimal seizures or to focus on a future life seizure free with the ability to have my own children while hindering my present . That is my question.

Today's Status:
Nervous. 2 seizures today- most likely caused by my stress of making a choice on my own.

Hopes for the Future:
Reaching my personal hopes and goals using my own strength and decisions.

Wednesday, February 11, 2015

Today, 2/11/15

I was flying out of Newark to go to Chicago, as my parents will be moving there full time this year. When I get to the front of the line when they check your ID and ticket, I make sure I show the security guard my NeuroPace card which states that I am not able to have MRIs, any magnetic devices, etc. This is time number 4 going through security and they glance at my card cluelessly.

I get the “what’s this?”

I understand the confusion, it’s new, but all you have to do is read the 2 sentences on the card. I have already tried to explain on my previous times going through security that I have an RNS implant and am not able to go through their security machines. The typical responses consists of a repeat, “What’s that?” or an “umm” or just a crooked stare. Again, it’s relatively new, I understand. But just read the card! 

My past responses to their confused reactions? “I have a metal implant in my head to reduce seizures. It is not safe for me to go through the security machines because of the magnetics and again, IT’S METAL.”

The “understanding” reply from every security guard checking my ID: “Oh, you have a pacemaker? Go wait for a pat-down.”

REALLY? When did I say I have a pacemaker in my chest? I tend to shake my head and walk towards the pat down.

Today, again I got the “What’s this?” 

 My response? “I have a pacemaker,” and walked to the area for a pat-down.

Today’s Status:
1 seizure today and working on my big decision from yesterday.

Hopes for the Future:
Spread awareness and, more importantly, knowledge of epilepsy, the technology, and potential options for a seizure-free life.

Tuesday, February 10, 2015

Today, 2/10/15

What a day. I've always wondered what the cause of my seizures are, and it seemed to always be related to a stressful time, though it can't be medically proven. Today was one of those days.

Yesterday I hit day 10 seizure free. Some people may think, "wow, that's it?" but others more like myself may feel amazed. I went from having at least one a day to going 10 days without one. This to me is a new lifestyle.

However, I do have a goal that my doctors and I have set. My number 1 goal is to be seizure free. My next goal is to be seizure free without the medication that has negative side effects. I've been relying a lot on my great doctors. Sending them my brainwaves twice daily for them to analyze, calling them with numerous questions looking for a direct answer, reporting to them if frequent seizures are occurring, and taking their brilliant advice to get me to the next step towards success. Today there was a change. I need to make a decision on my own. I have heard the ups and downs from my doctors, but the decision is in my hands.

I am a teacher of very young children. Because of my frequent seizures and possibility of surgery, I needed to go on a disability leave starting in mid October. After learning my surgeries were in mid November, I learned that the recovery time is about 4-6 weeks. My thoughts, I'd be back to work come January. Where I got this idea? No clue. Sure my headache was gone week 5 and I was able to walk around and be myself week 6. That's what "recovery time" is. It is not 4-6 weeks and you are seizure free. It takes time to figure things out and for your brain to settle down. Especially with this new RNS technology implant. They are still learning about it.

I went 25 days without a seizure, cut my dose of the bad medicine in half, had a seizure with the change, and just hit 10 days seizure free yesterday. I contacted my doctor asking what my next step is. Can I go back to work? Is it time to drop the medicine? What's my next step? She reminded me of our goal, but we need to play it safe. Knowing this can take more time than I expected is hard to accept. I'm anxious to go back to work, but more importantly I'm anxious to be seizure free. My doctor put the decision of returning to work in my hands and will support me with the choice I make. All I wanted was a straight answer, but she is not me. She doesn't know my work situation. She doesn't know others' reactions to a seizure where I work. The thoughts in my head started brewing. I thanked her for her help and told her I need to take a bit of time to think about this.

I hung up, explained it to my mom and my stress level of making such a big decision started to increase. A minute later, the aura comes on as we are getting out of the car. The next thing I know I am upstairs on my sister's bed.

It's time to make a decision.

Today's Status:
1 seizure.

Hopes for the Future:
Meet my goal.

Monday, February 9, 2015

Today, 2/9/15

Today was a calm, quiet day. The weather made it necessary to stay indoors- icy and cold! As much as I love sitting on the couch under a blanket with my boyfriend and dogs, I'm excited for the warmer weather when Spring rolls around. I enjoy being active outside. I have about 3 more months until I can run again, but nothing beats a walk outside. Time to listen to music, think about possibilities for the future, and reflecting on the past. Tonight I'll be walking on the treadmill for a bit, but it's not as enjoyable as walking outside. I don't enjoy just running for exercise- I love doing engaging things where I don't even feel like I'm exercising.

I started playing soccer again last year. I was no good, but I enjoyed it so much. I noticed that I started getting seizures during the game. When I was close to the team's sideline, I was able to say "sub" and wave another girl on. When I was on the other side of the field, I just let the seizure come while play continued. No idea what happened during the 30-60 seconds, nor do I know what I did during it. I wondered if I kept running around or whether I just stopped in place. I can't even ask anyone because they wouldn't recognize the difference of when I was having one vs when I was playing my best... that's how bad I am at soccer. But again, I enjoy it.

When I was in the hospital for my video EEG, they asked me when I usually get seizures. I don't really have a specific answer for them. They happen here and there and I never noticed a trend. I told them that every time I play soccer I have one during the game. They decided to see if hyperventilating gave me seizures. They did a breathing test with me. The nice man gave me directions to close my eyes and told me when to breathe and how big of a breath to take. He said it'll be around 5 minutes. About 2 minutes into it, I had a seizure. Strange. I never knew it'd be possible to make me have a seizure on command.

I've been interested in joining the soccer league again, but I know that I run a risk in every game since my RNS and medicine aren't completely figured out. The thing that makes me question whether or not I can do it at all is that I'd be a wimp not to do a header when the ball is on the way towards me in the air. I mean, I have this metal thing touching my brain and skull. What if it moved? I am not sure if it's a risk or even possible for that to happen, but perhaps I'll stick to a kickball league instead :-)

Today's Status:
Day 10 seizure free! And close your eyes if you're easily grossed out... [the biggest scab on my head came off today!]

Hopes for the Future:
I'd love to play soccer again, but even more so I look forward to the day when I am able to run again.

Friday, February 6, 2015

Today, 2/6/15

I've watched a couple episodes of Shark Tank today. I love this show. A ton. Seeing the people come on with their creations or ideas and putting everything in to be successful and reach their goals shows great commitment. Yes, they are on the show looking for support from the experienced sharks, but support from someone with experience creates motivation to take it further. 

This reminds me of things going on in my life- minus the idea of money. I have my own goal. I'm focused on this goal. Changing my lifestyle to reach this goal. Taking the risks to reach this goal. Doing research to reach this goal. Spreading awareness to reach this goal. But most importantly, I have the support necessary to accomplish this goal. Doctors with experience and knowledge of the brain, family and friends with experience and knowledge of emotions and changes, and others with epilepsy with experience and knowledge of options and effects.

My goal is a seizure free life. My motivation comes from all my support. 

Today's Status: 
Day 7 seizure free!

Today's Hopes for the Future:
Accomplish my goal.

Thursday, February 5, 2015

Today, 2/5/15

Today was a calm day; days like this, I need. Though it is not medically proven, I believe one thing that may perk seizures in me is stress. Stress from working, stress from emotions, stress from too many commitments, etc.

Taking the disability leave from work in mid October was my best option while having daily seizures and counting down the days until my surgery... or so I thought. Being a teacher of young children, they are used to routine. In my classroom we had simple basic rules- yet we stuck to them tightly, we had a schedule that we followed daily so the children never had to ask when lunch time is, and most importantly we had a close-knit warm environment. When I left, I frequently heard about how my classroom was going in different directions with a new teacher in the classroom. Poor behavior, changes in attitudes, lack of a bond any longer. My stress level increased because I was not able to be there to hold my classroom together.

Luckily, the paraprofessional I work closely with in my classroom was still there and continues to stay in the classroom. I am thankful that as the substitute teacher frequently changes, she is there so my students have someone to help them feel comfort at school. I keep in touch with her frequently. We talk about our students, talk about how I am doing, and decided to keep our conversations calm to relieve stress for both of us.

Today's Status:
Day 6 seizure free! Let's try to drop off the new medication soon!

Today's Hope for the Future:
I look forward to returning to work. I love teaching, but after my whole experience that I have been through recently, my focus has turned toward motivation, positive thinking, and risk taking. I'd love to do something involving this whether it be motivational speaking, being a life coach, or something I have yet to discover. For now, I hope to return to my classroom to end the year on a high note, and I can sneak in my new focus along with the academics :-)

Wednesday, February 4, 2015

Today, 2/4/15

Today I met my goal of having a productive day. I've been going through my old stuff at my parents' house, weeding through getting rid of things I don't need and organizing the things I plan to keep.

Soon my parents will be putting their house up for sale and moving to Chicago. I'm currently staying at their house, and have been since I got home from the hospital. Others do not want me living alone until I'm seizure free. I'm so thankful for all the support but at the same time it does frustrate me. I'm lacking independence as an adult living with my parents, on a leave from work, and without a drivers license to get myself anywhere.

My family and friends are putting in so much effort for me, driving me here and there, making sure I'm safe. I am the luckiest person to have all of this. Yet, somehow I'm craving my independence back.

I decided instead of being bored sitting around not working that I need to use my time to be productive. This is a good time to go through things, help out my parents going through their things, and taking up some of my hobbies. I've always loved to be crafty and I love to cook, so I've been making use of my empty days to entertain myself and make me busy. I am used to a busy day, so getting back into the flow of a busy day is making me feel like I am really coming back to my "regular" lifestyle.

Today's Status:
Day 5 seizure free!

Today's Hope for the Future:
I want to drop an old medication that was added back onto my list of pills due to my post-surgery seizures. I want to attempt to rely on this RNS. I'm willing to give all the time necessary to see how well this RNS can function and help my seizures. I was told yesterday by a member of the NYU Epilepsy team, "take the process as a marathon, not a sprint." That is my goal.

Prediagnosis : What is this feeling?

Age: 15, day 1
Current Medication: None
Recent Illnesses: None
Occupation: High School student, soccer referee, babysitter

I was standing in the kitchen talking to my father. I got a strange, random dream feeling. He continues talking to me, but I hardly noticed and didn't understand him as I was experiencing a new state of mind. I remembered this dream I had from when I was about 5 years old. It repeated in my head. I sat on an enormous piece of macaroni and slid down it with my legs in the air. What a strange and random thought. I hadn't remembered that dream since I first had it. I got goosebumps on my arms, though I wasn't cold.  I said something to my dad, but I am not sure what. He walked away.

That strange feeling disappeared as my dad left the kitchen. I was left confused, lacking emotion. I looked down and noticed I was standing in a puddle of urine. My pajamas pants were wet. Heaven forbid my parents or siblings see that I just did that. I grabbed a bundle of paper towels, some wet with soap and some dry, and dropped to my knees to start cleaning it up. I didn't feel that happening when I was standing there during my dream nor did I feel the need to use the bathroom at any time since I had gone a couple hours ago. I put the paper towels in the garbage can and hid it under a pile of trash to make sure it wasn't found.

I walked quickly directly to my bedroom, stripped myself of the pajama pants and jumped in the shower. Standing in the shower, I knew I was not going to have to explain myself to anyone when I'm alone. I teared up a little bit, embarrassed. What if someone had seen me? What if I was in school and the other students started laughing at me? Did my dad think I was acting weird? Will I have to explain myself to him? What if my mom smells it on my pajamas when she does my laundry?

The continuous thought that kept running through my head was, "what happened to me?" I chose to keep it to myself; it's never happened before so it will never happen again.

Tuesday, February 3, 2015

The Most Important Side of My Story

For close to a month now, I stepped away from blogging. I wasn't sure what my next post should be about or in what direction I was headed. I saw the published IEEE Spectrum article I was interviewed for about the RNS implant. ( I was happy seeing it and it made me reflect on the interview I had in person.

I remember the thrill I had talking about my whole life experience with the kind and enjoyable author. We discussed everything from the day I had my first seizure to my thoughts about the future. The quoted portions of our long conversation were focused on the RNS, as that was the base of the article it was paired with. The people who have read the article are very interested in the newest technology to better someone's health- as am I. The technology is truly amazing, but to me, so is my life experience.

I decided to go back to the blogging to share what I believe is the most important side of my story as the now "Bionic Woman":  Living my life with epilepsy. My past, my present, and my motivation and hopes for the future.