Lights, Camera, Action!

About a month ago, I was contacted by people from Intermountain Health Center, where I had my surgery. Each year they interview people who've benefited from the technology that Intermountain Health Center offers.  The stories are put onto the hospital's main web page, and it's also printed in a hard copy.  My neurologist threw my name into the pile of those who could be interviewed and they decided that my story was interesting enough to highlight.

This last Friday my apartment was turned into the set of a TV show!  There were about 3 cameras, a microphone, 2 different kinds of lights, and 4 people here who were all involved to interview little ol' me! It was crazy to see how much equipment was needed, and watching them decide where I should sit, what should be in the background (turns out it was my Star Wars plates!) and where the furniture should be moved to.  All of this to make sure what they filmed turned out the best way possible.

Nick took Brandon and ran errands.  If Brandon had stayed, the entire process would've become all about him!!  He LOVES to be the center of attention, and nothing would've been accomplished! My mom stuck around in the event that I had a seizure; that way someone who knew what they were doing could help, and she was also there to help fill in any gaps in my memory since they were asking questions regarding things that happened years ago.

Questions were asked about when my seizures started, how they've changed my life, how Nick and I met. Many different topics came up.  My surgery in July and hopes for the future, and the discrimination I've had to deal with throughout the last 20 years were also spoken about.

It was nerve-wracking sitting in front of the camera, not knowing if I was giving them what they needed.  I felt silly.  I've been on TV before, but it was in high school while I was doing parades with the band. During those performances your family is lucky to even see you since the camera shot is constantly changing, and you don't even know where the cameras are...there was no time to get nervous! Apparently the man who interviewed me will have his voice edited out, so I had to make sure that I restated the questions in my answers.  The teacher inside of me laughed when he said that to me!  Isn't that what we're always telling our student's THEY need to do?!?

Look at all the equipment they needed just to conduct a small interview!!

After the interview, they went outside looking for a place where they could take pictures of me. Pictures...ARE YOU SERIOUS?!?  I was uncomfortable enough while they were interviewing me.  Now they wanted me to actually pose for pictures?!?

While the pictures were being taken, I began to understand, if only just a little bit, how the girl's who SUCK on America's Next Top Model feel!  The nice man snapping the pictures kept asking for ways he wanted me to stand, or hold my head.  It was just unreal.

It was also during this time that I was asked to call Nick and have him come back.  They wanted to shoot footage of the three of us.  Turns out Brandon was going to be on camera after all! Brandon got out some homework and they filmed us working on it at the kitchen table.  We all sat at the table and were filmed playing Uno. Then the three of us went outside and a cheesy "walking hand in hand" shot was filmed.  I can already picture how THAT footage will appear in the final copy!

This new piece won't be featured until next April, so they want to check back in with me around February and see how I'm doing.  Great...more time to loose more weight!  They also want to film my neurologist and I interacting together, so I'll be doing that next month.

I now have an idea about how shows like Property Brothers are shot.  I know that TV shows are edited, but certain shows have a very "cut and paste" feel about them, like Property Brothers.  I have a feeling this piece will have that feel.  I picture my interview being a voice-over, with the footage they shot of us in the background of the piece. I could be wrong.

Brandon is pretty sure that this will make him famous!  I'm excited to see the finished product. It was an exciting afternoon.  Between brain surgery, and now this interview, this year has been full of "once in a lifetime" opportunities...if you consider brain surgery an opportunity!!

I'll be sure to post the video as soon as it comes out.  I'm very grateful to be able to provide more information for those who are struggling with this decision.  This has been a big leap of faith for me, especially since there isn't a lot of information available for those who are trying to decide if this is the right choice for them. I hope that through this interview, and my continued blog posts, that I can help others who have questions.

Since the surgery, I've had more seizures than usual, but I know that this is a process.  I believe that in the next year or two, I will have been able to go a good 6 months without having a seizure, and will be on my way to gaining my independence back.

NeuroPace RNS Surgery Recovery: 3 Months

Three months out from surgery and I'm completely healed.  I can sleep on my right side again, my hair is growing back, and my scar can't be seen by anyone.  I'm exercising, and am back at work, having fun.  All my coworkers were so excited to see me and hear about what had happened when school started.  I was stunned by how many people found out through word of mouth.  Everyone has been so kind, offering help in any way possible.

 

Look how fast my hair is growing back!  I have sideburns again!!

My scar, 3 months later

My RNS device has been "active" for about 2 months now.  Since that time there hasn't really been any decrease in the amount of my seizures, which has surprised us.  What has changed, however, is what happens to me while I'm having a seizure.

In the past, my seizures have caused me to completely "zone out" and not be aware of what's going on around me.  When the seizure was over, I'd have no idea what had happened during the seizure and would need those around me to fill in the blanks.  During the 8 weeks since the device has been turned on, I am now aware of what is going on around me during a seizure.  I can't quite continue having a conversation, but I don't need anyone to fill me in on what happened.  One day I was showing a bunch of girls at school pictures of my nail manicures.  I was aware I was in a seizure, and I was able to continue showing the girls the pictures.  I remember realizing I was having a seizure, actually thinking to myself, "Wow, you're in a seizure and you're still scrolling through pictures on your phone!  And you are able to have this conversation in your head!!"  It was very surreal.  Unfortunately, I still have the "old seizures", but they are few and far between, which is FABULOUS!  The fact that I'm aware they are happening, and can maintain control of what I'm doing has made this surgery completely worth it!  Another change I've noticed is that when I have one of the "new type" of seizures, I no longer have three.  In the past, if I have one seizure, it's a guarantee that before the day is over, I will have at least 3.  We have no idea why, it has just become my pattern.  This has been a welcomed change.

Next week my device will be adjusted, since the number of seizures hasn't decreased, but has increased.  It's taken a few weeks to get this appointment put together, since people from Neuropace have to fly out to Utah from California and make the adjustment.  This is still such a new procedure that even my neurologist continues to learn how this all works!  I'm excited to see what new changes the adjustment will bring.  I'm hoping that the amount of seizures will decrease.  We will have to wait and see.

I've had many people ask me how the process of getting information to the computer and then having the device respond to me works.  I still don't know all of the details, and I'm hoping to understand more of this when I have the device adjusted this week.  I have pictures to show you regarding what I do with the computer.

Here is the wand that I use.  This wand goes on top of my head where the device is placed.

Each time I begin, I test the wand strength, making sure that I have it in the correct place, directly over my device.

Once I know it is in the correct place, it begins transferring the data from the device to the Neuropace system.

I do this every few days, and especially on the days when I have a seizure.  Like I said before, I don't understand how this exactly works, but I look forward to getting more information about this as Neuropace receives more data from me.

Finishing on a fun note, the hospital that I had my surgery in, Intermountain Healthcare, does an annual report, highlighting the new technology the hospital offers.  They pick a few people who have been helped by this technology and produce this report in both a digital and paper copy. I've been asked to be interviewed for this annual report.  People will be coming to our house to conduct the interview.  Apparently this will take a good 2 to 3 hours.  I'm told that this is because they need to set up lighting and sound equipment.  It's like a TV show being filmed in my house!!  Hopefully I won't come off looking stupid...I've never done this before!

I'm excited to be able to help others decide if this surgery is for them.  There isn't a lot of information about it, and I've sent my blog posts to my neurologist so that she can give them to others with questions, concerns, and fears.  I hope that these posts are able to help those looking for information about this procedure.

I'll post all about the experience once it's completed!

Salt Lake Comic Con 2016

I've never been to Comic Con before.  I know, surprising, considering how much of a Star Wars freak I am. It's just something that I was either never able to do, or I wasn't interested enough in the people who were going to be there to purchase a ticket.  It can get very expensive depending on the package you want to buy.

Well, this time around they managed to book Mark Hamill, the actor who plays Luke Skywalker!  He was scheduled to do a panel (talk to the crowd) today.  To get into this panel, you had to purchase a ticket and were then placed into a lottery.  I didn't purchase a ticket since it wasn't a sure thing that I'd get to see him. Well, the people of Utah spoke because not only did they move him to the Vivint Smart Arena where the Utah Jazz play, and seats 20,000 people, but they also took the lottery system away.  All you needed was a $20 ticket and you could go to his panel.  I was still hesitant to go, since it was scheduled on a Thursday, and I didn't know what I would do since I worked that day.  I was bummed.  How often does LUKE SKYWALKER come to Utah?!?

Last Sunday, as I was wishing I could go, Nick told me to just purchase the tickets and be done with it. Holding my breath and shaking with excitement, I did just that. Since I'm a teacher, I received a discount on the ticket price (NICE!) and with the help of my mom and sister, we put a plan together, and I was set to go. I was going to see LUKE SKYWALKER on Thursday. I was excited; and I mean really excited!

Monday, Tuesday, and Wednesday seemed to take FOREVER to get through!  And then this morning, my sister and I left for Salt Lake at 5:30AM.  You could stand in line as early as 6:00AM.  I KNEW that there were going to be HUGE lines to get into the arena, and I wanted the best seats possible.  We arrived around 6:30AM and I was right; there were already many people in line.  We made a VERY fast walk to one of the lines, and ended up standing behind only 4 people!!

For the next 2 hours before the arena opened to the public at 9:00AM I was caught up in different conversations about Star Wars with those around us.  I need to give credit to my sister.  She doesn't know much about Star Wars, so I needed to "dumb down" what everyone was saying and then she got it.  I had told her earlier in the week that she was going to be introduced to my CRAZY world of Star Wars geek, and it had begun. When those around us realized she didn't know a whole lot about it, they were funny and told her they'd "forgive her", and "indoctrinate" her into our crazy world!  Through it all, she kept a smile on her face.

All of the people who had VERY expensive "super fan" tickets were able to go into the arena earlier than us. I wasn't concerned about them taking our seats because I knew we had general admission and they wouldn't be sitting near us. The doors FINALLY opened a little after 9:00AM and I FLEW inside to grab the best seats possible.  Getting to the arena as early as we did paid off again, as our seats were right behind those who paid hundreds of dollars!

Best hashtag EVER...and I don't even use Twitter!

After we secured our seats, I happened to discover there were "visitors" back on the main level of the arena. I went to investigate and found this...

 Hello, Kylo Ren!

The Empire...

I don't know where they found the guy in this suit, but he was really tall! 

And look who managed to get a picture with Darth Vader and the Emperor's Imperial Guards!! My life is now complete!

Sitting in the arena, I found myself getting more and more excited.  It was worse than a kid at Christmas!  It was like I was back in the theater last December waiting for The Force Awakens to begin!  There was an MC who kept the crowd excited, and screaming.  He told us that the largest Comic Con panel ever had 8,500 people in attendance. They were hoping that we could beat that.  Salt Lake and San Diego Comic Con have a MASSIVE dislike for each other.  San Diego founded Comic-Con, but Salt Lake has taken it to an ENTIRELY different level, and San Diego isn't happy about it at all!  Salt Lake was hoping to beat the record as further proof that theirs wasn't going away any time soon.

And then it happened:  Mark Hamill, the one and only LUKE SKYWALKER, came onto the stage and the ENTIRE arena, which was COMPLETELY filled, (and probably means we SMASHED the "panel record attendance") stood up and went into screaming hysterics for a good three or four minutes.  I did it right along with everyone else.  I'm loosing my voice, and I DON'T CARE!

This picture was taken by the media and posted online

These were from the jumbo tron, and taken by me

Our actual view from where we were sitting

Always grateful and hilarious, Mark let us know that we are his 20,000 new best friends.  He also reminded us that the one question he wasn't allowed to answer was because he was contractually obligated NOT to say anything and that we'd find out next December when the next Star Wars movie comes out!  

He talked about his voice acting, and spoke in his Joker voice quite a few times.  The crowd went wild, of course.  He told us that the choice to make Luke sound so whiny in A New Hope was because if there were sequels, he wanted the character to show growth.  That made me like him even more.  The "whiny" Luke is something that MANY people can't stand.

The best story was when he told us about how everyone came back together for The Force Awakens. Carrie Fisher (princess Leia) was quick to jump into it.  Mark was a little more hesitant and decided he'd only do it if Harrison Ford (Han Solo) would do it. Thinking that would NEVER happen, he figured he was in the clear!  Of course he was happy that he did come back to the franchise.

Mark Hamill is a very funny man.  The entire hour the crowd was laughing, screaming, and clapping. A person in the audience asked if he knew that Princess Leia would turn out to be Luke's sister.  He didn't, and told us how sad it was the the ONLY woman in the galaxy, who Luke and Han both had a crush on, would end up being related to Luke!

The hour went by VERY QUICKLY and before we knew it, the panel was over. Someone would walk around the stage with a sign letting him know when there were 10, 5, and 1 minute left. Then when the sign saying time was over came around, he picked it up and promised us that the next time he comes, it will be a 2 hour panel. Again, we screamed with excitement.

As he left the arena, everyone once again stood up and screamed.  He walked around the stage, shaking the hands of those who paid for the really good seats...I was jealous!  Then the MC came back out and told everyone that William Shatner (Captain Kirk) from Star Trek was coming out in 15 minutes.  The rumor is that he demanded to be moved from the Grand Ballroom into the Vivint Arena.  I thought it was funny that he wanted to be there, since I didn't believe there was ANY WAY he could fill it with fans like Mark had. Once Mark was gone, HUNDREDS of people, including myself, left the arena!  I would love to find out how many people actually stuck around.  

So I did it. I was able to be in the same room as an actor from Star Wars. And not just any actor from my beloved franchise, but in the same room as LUKE SKYWALKER!!! I still can't believe it and I'm purposely writing this blog now so that I'll always have it on record for when I forget about the details in a year. Remember seizure patients have horrible long-term memory!!

Needless to say, I will be keeping my eye on who is coming to Comic Con twice a year!

NeuroPace RNS Surgery Recovery: 1 Month

Truer words have NEVER been spoken!!  I found this today and laughed for a good 10 minutes because I've done each one of these over the past month!!!

Wow.  It's already been a month since I had my surgeries.  Amazing.  On a whole, recovery has been going well.  However, the  past two weeks have been full of ups and downs.  Last week I was feeling pretty good. My hearing returned to normal, which was fabulous. I wasn't waking up with migraines any more, which was the most fabulous improvement!  I have a walking exercise DVD and started doing it each morning to help build my strength back.  I took it nice and slow so that I didn't overdue it, and Brandon did his version of it with me to keep me company!  Three of my friends dropped by to visit, which is a big deal because not only am I a hermit who likes to be alone, but I actually had the energy to visit with each of them!  I even had enough energy on Sunday to do my hair and make-up for the first time since surgery and go to a family dinner.  I felt like last week I had taken two giant steps forward in my recovery process.

This last week has felt like I've taken three enormous steps backward.  Monday, my body decided it was very unhappy with either my dinner or something else and forced me to get rid of it.  It was SO MUCH FUN!  Tuesday, I was able to walk around Wal-Mart for quite a while, getting Brandon clothes for the upcoming school year.  I also had an optometrist appointment and made it through.  By the time we got home late that afternoon, I was done for the day.

By Wednesday I was exhausted again, and I stopped using the walking DVD.  All I wanted to do was sleep all day like I had during the prior three weeks.  I did manage to do my nails, which was a big accomplishment, but that was about it.  I had been making dinner for the past few days because I had the energy to do it.  That also just wasn't going to happen.  It was very frustrating.

Thursday, I had one of the worst migraines I've had since my surgery.  It lasted the entire day, even with the pain medication that I had.  It was a miserable day.  My body once again decided it was unhappy with my dinner and I lost it.  It's one thing to have a horrible migraine, but to also have an upset stomach at the same time was almost more than I could handle.

Thursday evening, after my stomach was empty, something incredible happened.  Nick and I checked how many doctor's bills had been posted to our account, and how much we were going to owe.  We were prepared for the bills to be enormous, and figured we'd be dead before they were paid off!  This surgery had accrued around $200,000 dollars, and we only owed a few thousand!  We couldn't believe it since our insurance has often not been the greatest. Needless to say, we've never been more grateful to have medical insurance!

Since the Monday after I came home from the hospital I hadn't had any seizures.  I can usually go up to twelve days without having one, if I'm lucky. This time I was closing in on almost FOUR WEEKS since having one. Where this was phenomenal, and a good thing, I was also a little more than disappointed.  As dumb as this sounds, I began to wonder if all it took was a doctor messing around inside my brain to fix it, and that all of this recovery crap had been for nothing!  Well, my seizures finally reappeared yesterday. When I have a seizure, I will usually have a total of three throughout the day.  We have no idea why, it just seems to be my pattern.  After coming back from getting the mail, my first one came.  I was getting some water and that's all I remember.  I was extremely dizzy for the remainder of the day, and two more seizures came within the next few hours.  I was more than a little relieved; again, as stupid as that sounds.  Those three seizures, along with the dizziness, left me sleeping the rest of the day.  As I write this now, I'm beginning to get dizzy.  Oh well, I'll continue to live with it!

During the first few weeks of my recovery, Brandon's friends stayed away from the house.  They had no idea that I'd had surgery, and I was really grateful they stayed away because not only was the doorbell not ringing, but Brandon was around to help me.  For some reason, that all changed this last week.  If it wasn't someone knocking on the door, it was the doorbell ringing...CONSTANTLY.  I didn't want his friends coming into the house because of how I was feeling, and I REALLY wanted to sleep, so he would go play with them.  Apparently this upset some of his friends, and they would go back down the stairs crying like little babies!  Oh well.  I asked Brandon one day if he was upset that I didn't want his friends coming into the house and he said no because he understood that I was still recovering and needed to rest.  Such a sweet boy!  By Thursday I had to put a note on the front door explaining that Brandon was out playing, and to not ring the bell because I was sick!  Apparently that didn't work because Friday and Saturday morning one of his friends rang our bell at 7:40AM!  Looks like I'll be having another conversation with this boy!

I have nine days left until Teacher Training begins, with 17 until the school year commences.  I'm more than a little worried.  I know that I can do this, but I'm hoping that my body cooperates.  This coming week I plan on using the walking DVD, and while resting in the afternoon, doing as much as I can to prepare my body for training. Luckily, I'll be sitting the majority of the day during this training, so that's a major plus!  I'm excited to see my friends again, but I feel like I've lost an entire month of my vacation since I've done nothing but spend it recovering!

I'm also excited because I'll be getting a haircut in two weeks, and I can finally COLOR MY HAIR!!  When I did my hair last Sunday, I noticed that the right side, where my hair was shaved off for surgery, is much more layered than the left side now, since there's less hair.  That will be fixed with my haircut!  The pictures of my hair are beginning to embarrass me! I'm reminded each day just how long it's been since I've eliminated the gray color that is fighting to be seen by all!  I'm also impressed by how fast the hair the doctor had to shave is growing back.

You can see from the above picture the difference in the layering from the left and right side.

Above is a great shot showing just how fast my hair is growing back.

Ending on a happier note, my scar is healing wonderfully.  I still can't lay on my right side, which is annoying, but washing and brushing my hair no longer hurts.

Each day I try to remember this!

Have a great day everyone!!!

Poking Fun At Star Wars

Most of you know that I LOVE Star Wars...minus the prequels, that is.  A few months ago I stumbled across two YouTube channels that have provided me with hours of laughter.  One is titled "Everything Wrong With..." where movies are picked apart and made fun of because of the ridiculous issues they present.  The other channel is titled "Honest Trailers" where they sort of do the same thing.  Instead of telling us what we want to hear and see about the movie, this channel gives us trailers about how the movies really are!  Sometimes they are simply nitpicking, but they are hilarious!

There are TONS of movies reviewed on both of these channels, but I'm going to focus on my favorites today.  First off, the Star Wars Prequels.  The prequels are the ONLY movies on the ENTIRE "Everything Wrong With.." channel's list to have a part 2 since they are so bad!  These run long, but they are worth every minute...especially if you're in need of a laugh or despise the prequels as much as I do!!

Everything Wrong With The Phantom Menace:






Everything Wrong With Attack of The Clones:






Everything Wrong With Revenge of The Sith:





Wasn't that fun?!?  I told you they were accurate!!!

Now we come to my babies.  They did A LOT of nitpicking on these, but they also had quite a few good points!

Everything Wrong With Star Wars:




Everything Wrong With The Empire Strikes Back:




Everything Wrong With The Return of The Jedi:




Everything Wrong With The Force Awakens:




And now on to the Honest Trailers YouTube channel!  They don't have an honest trailer for The Empire Strikes Back and Return of the Jedi yet, which is odd, but all of these trailers are ABSOLUTELY dead on...even episodes 4 and 7!!!

The Phantom Menace:




Attack Of The Clones:




Revenge Of The Sith:




Star Wars:




The Force Awakens:




If you stuck around long enough to watch all of these; I'm impressed!  They were awesome, weren't they? Now no one can say I can't take a joke or laugh at my favorite movie franchise!!!