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Monday, March 2, 2015

A Reminder and a Boost

“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You're on your own. And you know what you know. And YOU are the one who'll decide where to go...” 
― Dr. SeussOh, The Places You'll Go!

I needed to read that today... Perhaps every day to continue to stay strong, confident, and positive. 

Sunday, March 1, 2015

Today, 3/1/15

Tonight will be my first night sleeping in an empty home. Part of me is embracing the independence, yet part of me feels lonely and a bit helpless. By helpless, I don't mean I can't do anything on my own, but I know I'm stuck here in my apartment and can't get myself anywhere and if there were to be a problem, nobody is in the house to help me... Welcome back to real life. 

As much as I've been longing for independence, I have now realized how much more grateful I am to be with those who are always there to help me. I've been grateful for them since the beginning, but the big change makes it stand out even more. 

Independence for someone in my shoes is different in some ways from an "everyday person"... Though really, there is no such thing as a person like that. Anyhow, in the morning when I wake up I'm going to make myself breakfast- pancakes in fact, just like the "every day person". In this scenario, the difference being in my shoes? When I forget that I don't have any syrup, I can't get myself to the store and everyone is at work that lives within a short distance of me. So instead I'll just stick with having eggs. I whip out every thing to make my omelet, cut up the veggies, take out the pan and put it on the stove. Stop right there- the example the doctor gave me about living independently was, "what if you're cooking on the stove and a seizure is coming with the flame going and you attempt to turn it off or forget to before the aura is over and the seizure comes?" I put the pan away with that thought in the back of my head. 

Tomorrow's exciting breakfast on my own? Cereal.

But hey, I'm one step further towards becoming one of these non-existent "everyday people"... I slept overnight in an empty house. For me, every step counts :-)

Today's Status:
No seizures and independent overnight. 

Hopes for the Future:
Cook myself some pancakes over the stove, drive to the store to grab some syrup, and enjoy my breakfast- alone in my home.

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 NBCNews.com

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. (http://spectrum.ieee.org/biomedical/bionics/life-as-a-bionic-woman) 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.

Saturday, January 10, 2015

#curechelsey14

Yesterday I was leaving the hotel to go out with my mother during the day. We walked out the front door and I held the door for a man that was coming in with his suitcase. He walked in and I let go of the door, he stopped, caught the door, turned around and said, "Chelsey?"

I have never seen this man before. My father is having a conference here at the hotel, so my first thought was that I may have met him once before, but I don't recognize him. I glanced at my mother who looked as though her claws were out in case this man was after me.

I nodded my head gently. He seemed to notice that encounter was a bit strange. "Sorry, I work with your father. I've read all about your story going through brain surgery from what he had posted online. I recognized you from the pictures."

"Minus the gauze wrap around my head," I said smiling.

"That's right. You are very strong and courageous for going through that and I hope all is going well. I hope to talk to you when I run into you later."

I thanked him. I thought to myself, wow I am popular!... But more seriously, the thought of others thinking about me as strong and courageous makes me realize how life changing the whole experience was.

To read a few of my father's Facebook updates on my surgery, search #curechelsey14 on Facebook.

Wednesday, January 7, 2015

Back to Reality- Traveling

Today I took a flight for the first time since the surgery. I am mostly looking forward to relaxing in the warm weather of Florida instead of being freezing cold stepping outside in New Jersey. I am feeling like a real person more and more. Traveling is a big part of my life, as it is by far my #1 hobby. I'm waiting until the day I step out of the country again. 

Being in the warm weather will give me the freedom to do things that I haven't done since the big change. They may seem small and unimportant to most, but they make me feel like I am really getting back to being myself. Spending time outside is what I need most. I just want to go for a long walk on the beach bending over to pick up shells and taking a dip in the ocean. Exercise is something I've been craving. I know I'm not ready to run or play soccer yet, but going for a long walk outside will feel amazing. Coming home from the hospital, I was excited to walk up and down the driveway, a week later I was excited to walk around the small block with a dead end, and each day I went for a walk I would stretch it a bit further. But it being freezing cold out is not enjoyable when wanting to walk for a few miles, especially with the thought of slipping on ice. 

I remember the first time walking outside when it was freezing after surgery. Granted, I was a bit overly cautious still learning about the RNS but when my head got cold, the first thought that came to my head was "I have metal in my head, can I be outside in the cold with that? Will it freeze quickly and ruin it?" Looking back, not my brightest questions; after all it's inside my warm 98.6 degree head. 

Exciting as well, I look forward to the pool and ocean. The only water I've been in so far is the shower. To me, slightly boring. Getting to swim a bit is definitely something that puts a smile on my face. I did promise my head would be covered while lounging in the sun. Don't want to disturb my still slightly scabbed, yet healing lines on my scalp. At least I get to wear my favorite oversized sun hat to come off as trying to be stylish!

Interesting side note at the airport. I had a feeling that it may be difficult to explain my reasoning of why I can't go through the metal detector. Who else has a metal mini iPod looking device in their brain or who has even heard about this RNS device? I surely hadn't known about it before it being discussed the week before surgery. I figured I was a bit strange. 

I got to the security woman checking IDs and plane tickets. I began to explain holding out the card Neuropace sent me, "I have a metal device in my head, and because of this I-" 

"Put your things on the belt like everyone else and when you get to the detector, tell them you cannot go through for medical reasons. Have a good flight," she said. I smiled knowing that I'm not too out of the ordinary having metal inside. I put my belongings on the belt and went over for my first pat down. 

Though I'm still experiencing seizures, I am looking forward to a warm, relaxing getaway and another step towards my real life.

Tuesday, January 6, 2015

New Looks: Post Surgery

Looking in the mirror after the second round of surgery, my eye looked a bit squinted like it was pulled too tight and then stapled. This didn't bother me an ounce, I was just happy I looked like a person and could see out of both eyes coming out of two rounds of surgery on the top, side, and back of my head. The doctor had told me at one point there is a bit of swelling which is natural while healing, but it will go down.

He was right. About 2-3 weeks later my eyes looked back to normal as I really began to feel normal in general.

About 6 weeks after surgery, I went to a musical in the city with my family. I decided to bring my glasses with me because sometimes I need them for details in the distance and I wanted to capture it all while watching. I realized this was my first time putting on my glasses since before surgery since I didn't want to poke the area that had the scar in front of my ear, and then once that area was healed I just hadn't needed them. I had just kept them in a hard case in my bedroom to make sure they would be fine and I didn't ruin them.

Quick flashback: When I bought my glasses about a year ago, I put them on and they were crooked. I have always had trouble with glasses looking crooked on me. Sunglasses, eyeglasses, cheap, expensive, always crooked. The person helping me in the store had to take them to the back at least 5 times to melt the part in the center and bend the glasses to at least appear straight on my crooked ears.

Back at the musical, I take my glasses out and put them on to watch the show. Completely crooked! They've been in a hard case and haven't been touched in over a month. How is this possible? I wore them anyways so I could see the show, took them off at intermission because the lights turned on, and popped them back on when the lights dimmed.

When we left the theater walking down the street, there was a little touristy market that had tents outside. I saw a ton of sunglasses and insisted on trying a few pairs on to see what is wrong with my ears now. I grabbed one pair, tried them on, perfect fit. Took another, tried them on, perfect fit. Never have I tried on glasses and had them sit straight without serious bending.

My ears are now perfectly straight. Thanks, Dr., for being a perfectionist stapling me up making sure my ears are symmetric. Went into surgery with the thought of coming out with possibly a few small strange changes in my looks, came out looking even better than before. Bonus outcome to brain surgery!

...I wonder if I will ever need surgery in my gums at some point. Maybe my crooked tooth will come out perfectly straight...

Thursday, January 1, 2015

Crazy Hair- Don’t Care: Post Surgery


So I’m at the Epilepsy Center getting a post-surgery checkup with my surgeon- the most amazing doctor I have ever encountered, and I am thrilled repeating that every time I mention him- and he tells me he will begin taking out my staples. I’m a bit on the edge because I have never had staples before, but one of my friends who is a nurse told me that getting staples out is not painful at all, so I can handle this.

Dr. D, the best of the best and genius of all geniuses, first told me, “usually A-name [the main nurse practitioner and Dr. D’s assistant, also an amazing person] takes the staples out but she’s very busy at the hospital today so I am just going to do it this time,” as I recall him digging through the drawers for the “regular pliers.” Clearly, not his usual routine. Has he even removed staples here before? What is going on?!

he comes over with the pliers and I flip my hair to its old natural part instead of how I changed it to hide the scars and Dr. D starts in the spot that has been a sore spot in general and my eyes start tearing up. This isn’t painful at all??? It hurts!!!

Then he asked if I felt pain after I shouted, “OOH! That one hurt!” What do you think my response was with tears forming in my eyes? “Eh, it pinched a bit right there in that spot,” as if I am a champ… I did just have my whole head opened up, my skull removed and put in the freezer for 5 days, my head closed up with a staple gun (that most people use on the wall at work) with wires coming out of my brain, my head opened again with an extra opening this time to put in the iPod sized technology implant, a piece of my brain removed, and then got closed up with about 60 staples to heal well… so no big deal. Just removing 60 tiny staples from my healing head today. I can handle this.

Dr. D said to me, “This spot is a bit sensitive on your head because we had to do the extra cut and all the openings come together at this one point, so it may be a bit more sensitive there.”
           
Ok, so it’s worse in that one spot, that’s good, so maybe it won’t hurt as much in the others… but a BIT more sensitive with 58 more staples to go?! Jokes, right? As he moves further away, the pain does die down extremely and I let out a few sighs of relief. The last part I have left is the 7 on my left sideburn line by my ear (attractive, I know). Before Dr. D, the brilliant man, begins right there he casually tells me, “just be aware I am doing the side here and the majority of people with this tell me this part is the most painful of the staple removal process.” MORE PAIN THAN BEFORE?! What was my nurse friend talking about this zero pain on staple removal?
            
I calmly replied, “Alright, let’s just get it over with.” I felt the chilly metal plier-like tools on my sideburn line and began gripping my thighs with my knuckles turning white. He took the pliers off my head and put them back on a bit underneath and repeated again and again.

Dr. D tapped the side of my face 3 more times. “Is this side painful at all with the removal?”

Whoa. Wait a second, “You removed the staples on the side? I didn’t feel a thing! I thought you were just trying to make sure the pliers were in the right spot!”

“Yes, they are all out. That is usually the most painful part. Glad you didn’t feel any pain!” says Dr. D, the neurosurgeon of the century, seeming a bit confused about how I felt nothing. At least he’s the most positive person ever, enthusiastic I didn’t feel it. “Well, let me tell you, you’re healing looks fantastic. There are still some scabs on the lines and they are still raised some, but this is part of the healing process. These scabs will be falling off regularly so make sure you are still washing your hair well and gently. The raising will go down eventually as well. Looking great though, I am very impressed.”

Well could that news be much greater? I look fantastic and impressed the doctor of all doctors! Sticking to the title of the Champ today. So my dad whips out his phone to continue his over the top documentation of everything that goes on during this surgery process. He asks me if I want to see, and of course I do! I can’t ever see the side, top, and back of my head!

He hands me the phone and my jaw dropped. “What?! I’m missing this much hair?!?!” I didn’t know this much got shaved off! I thought I had 3 thin lines missing and that’s why I switched my natural hair part to cover it up. Literally I have a patch about 4 by 4 inches shaved from the top of my head along with the thin shaved lines.

“We unfortunately had to remove more hair than originally planned because we decided to implant the RNS. We kept it as minimal as possible,” Dr. D explained.

I paused with my over the top instinct response once Dr. D said that to me. I remembered coming home from the hospital and the next day removing the gauze-like head wrap I was wearing so I could wash my hair. I remember the first thing I noticed when I took it off was this tiny thin perfectly braided bit of hair on my left side above my ear wrapped up tightly in a bright blue long rubber band. Dr. D had taken that extra time during surgery to care about saving that thin string of hair to help cover up the scars once surgery was over because he knew how much I wanted my hair. Here I am frantic about this glob of hair missing on top of my head, yet that memory of the braid had shortly slipped away. Dr. D would do anything possible during this process to keep me looking as much like myself and healthy after surgery. Reflecting on that little tiny braid and how kind and caring and particular this one of a kind doctor made sure his work was perfection, I immediately became absolutely careless about what my hair now looked like. I couldn’t be happier. 

I’m looking forward to the day my hair grows back about an inch just to stick straight up through my long hair. It’ll remind me again of the success of the surgery every day I try to keep that crazy hair under control getting ready to go out during the day with a smile on my face lacking the fear I’ll have my old regular daily seizures.