Step by step

Ever been in a situation where it was a bad situation overall but if it was going to be bad you’re glad it played out like it did? Like you got really sick when you had planned on using your vacation time at work for a staycation. Yes it sucks you’re spending your off time sick at home but hey at least you’re getting paid for it and at least they already planned for you to be off. Thats how this past weekend was for me. Seizures are the worst and will continue to be miserable however VNS gave me a glimpse of how it can help with some of the side effects of seizures. Friday Night busy night at work not overly stressful but it had been an overall bad day for me. I had a seizure but was coherent well before the EMS got to the hotel they were impressed. Though I don’t remember all that was talked about I know I talked about my VNS and was asked about who the president was and I want to say I said “It’s not Obama anymore…” but I can’t remember if I actually said Trump even though he was inaugurated months ago. After I went home I had no trouble going to sleep which was unusual for me normally my mind races and I can’t get it to quiet down. The next day I woke up surprised to find I didn’t have a headache, I didn’t have muscle soreness I felt normal. I called work and they were also surprised to hear i was coming in because normally they tell me to take a day and sleep it off. Everyone at work said I acted normal not sluggish or anything that next day. So while we are still trying to figure out what the correct level to put my VNS at I’m just happy that I have a course of action I can take in the form of the magnet instead of being a time bomb that may or may not go off. That it lessens the effects of the seizures and shortens recovery time. The magnet isn’t complicated to use and fits in my pocket. It is helping. It just is taking time for my body to adjust and one day i’ll get there.

Published in: on May 8, 2017 at 5:59 pm  Leave a Comment  
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VNS update 2.0

I’ve been asked to give my two cents on my vns experience thus far. I love it. It gives me peace of mind that I haven’t had before even with medication there was always that underlying fear that you would get used to the current dose and it wouldn’t be effective but you wouldn’t know that until you had a “breakthrough seizure” or unless you had regular testing and who wants to have brain tests done several times a year not to mention EXPENSIVE! VNS therapy is a stimulation therapy known also as “the pacemaker for your brain” it’s also used for people struggling with depression.  The electrical current runs up my Vagus Nerve every 5 min it gives me a 30 second current of energy. The strength of the current is slowly being increased as you would slowly introduce a new medication into your system. The first level I didn’t know what to expect but I got used to it fairly quickly. I will say I’m glad my job doesn’t depend on me talking on the phone all day, making speeches or singing because when this thing goes off I sound robotic. There is a way to “pause” it but it comes with it’s own negative results so I don’t like to do it especially when I first get it turned up. Being I’m only the second person in asheville to have this particular model which reads my heart rate my neurologist is fascinated as am I by the data my device provided at my recent appointment. We think that it might be too sensitive because it’s firing alot and maybe more than it should. When it does it’s a stronger signal and it typically fires when I climb up a big hill and I feel like i’m being smothered and it’s really hard to breathe. It’s a weird feeling since i’ve been blessed to not have asthma or breathing problems it kinda freaks me out. But so far so good and I’m looking forward and hoping for the day where people only know I have epilepsy because I have told them about my VNS not because they have experienced my seizures first hand. Thanks for all your thoughts and prayers. If you have any questions feel free to ask away I love talking about it since it fascinates me 🙂

Published in: on May 2, 2017 at 3:32 am  Comments (1)  
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The brain is a fun place….

You might ask why I title my blog post this but the brain is so cool in all that it can do and my reflection goes through my journey in epilepsy.  I’m not entirely sure where to begin my blog but I wanted to thank my family, friends, roommates, and coworkers who have come along this journey with me. I’ve tried a myriad of medication over the past decade all of them have helped with the seizure symptoms somewhat but not completely and they caused an additional problem. Problems ranging from sentence construction, loss of focus, headaches, crazy vivid dreams, enhanced auditory senses, nausea and loss of interest in food. I had a hard time at work and started having more seizures at work. It made my chefs and co-workers nervous around me like I was a bomb just waiting to detonate and there wasn’t anything I could do about it.

I couldn’t continue to live in fear. So in November I participated in a sleep study where my neurologist collected data on my seizures and proposed I get a new implant surgery. VNS or Vagus Nerve Stimulation implant was something I had read about in studies and had recently met a girl who was a couple years younger than me that had had the surgery and it had done wonders for her. After thinking it over I decided to go for it because in my mind there wasn’t another option. I was able to get time off work, insurance helped pay for the surgery and I found out that I was the first person in asheville to have the newest model installed and monitored in asheville.

I’m two weeks post surgery and they decided that today would be a good day to turn on the device. I was a little nervous walking into the doctors office this morning, almost an hour early for my appointment, not entirely sure what I should expect. I was led through the labyrinth, that is the doctors office, by the nurse while she rattled off the generic questions to which my answers rarely change to their biggest exam room. The nurse briefly left me in the room before my neurologist came in followed by her entourage of three other VNS reps.

Over the next few months they are going to be working on increasing my “dose” with the goal of reaching “1” for the device right now I am at .25 for 30 second intervals every 5 minutes It also reads my heart rate and if it spikes rapidly like 60-84 in 5 seconds it will send a .37 current because often times increase in heart rate is an indicator that a seizure will proceed so this feature attempts to neutralize that. Another feature is the magnets which I will keep on my person in the event where I feel like a seizure might happen or if someone sees me having a seizure they can take the really strong magnet and swipe it across my heart (where the device is implanted) and it delivers a dose twice as strong as the normal for 1 minute.

Eight hours later my comments would be sometimes it takes my breath away. I feel like had a workout today when I didn’t do a whole lot. Sometimes it makes me cough of suddenly intake air. Sometimes it feels like mild suffocation with the pressure and feels like someone took one of those cheap dry erase markers with the erasers on the cap and after it had been used for awhile rubs it up and down in the same spot on my vocal chord. Not super pleasant but I’m hoping that over time I will grow used to it and that I can be another success story. I want to look back on this year and see change. Thanks for all of your continued prayers and support!


Published in: on April 1, 2017 at 1:22 am  Leave a Comment  
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Chasing life

I am watching this show on abc family called chasing life it’s a drama and it hit home with me and got me thinking. The main character is a young lady aspiring to be a journalist when she finds out she has cancer. The show goes on to live life with her and the struggles which become very real. What I love is that she doesn’t give cancer control of her life. She would have every right to feel sorry for herself but instead she goes out and lives life to the fullest. It got me thinking about all the things I give permission to control of my life. My job for one, I am working over 40hrs a week and doing the work of 2 people. But even when i’m not at work I find myself talking about my fustrations, how i don’t feel appreciated or how sometimes my coworkers drive me crazy but i’m blessed to have a job. When you spend so much time, energy, and thoughts you become controlled by that. I feel like I have done a pretty good job at not letting epilepsy control my life. Granted i don’t deal with it on a daily basis but its part of who i am. Why i don’t party, why i don’t lie on 4hrs of sleep, why i don’t drive and why I believe in the divine purpose of my life. Don’t get me wrong there are times where i’d love to not care so much about my health i’m young and healthy so why not live carefree? It’s taken me years to get to the point where I don’t get bitter when people ask me why i don’t drive and even longer to just flat out tell them “I have epilepsy and can’t drive” rather than beat around the bush. What you let control your life determines your attitude and outlook on life. If I let epilepsy rule my life I’d live in fear that I’d have an episode and hurt myself or die. I’d never swim, live alone and I would have pity parties. I’d adopt the mindset that life isn’t fair why should a good godly girl be dealt this hand in life? but instead I strive to let Christ rule in my heart and in my mind b/c that gives a purpose to my empty life. He reassures me that I am not alone that nothing happens to me that hasn’t been preapproved. Even if I don’t understand it now when I get to heaven all of my current worries and struggles will melt away and I will only care about things of heaven. so whether you have a health issue or are allowing something or someone other than christ rule in your heart and mind then give all your hopes, dreams and desires up to the creator (he already knows them anyway). Live the fulfilling god centered life you were created for. 

Published in: on June 28, 2014 at 4:40 am  Leave a Comment  
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The American Dream

The american dream (AD) is the “ideal” life. Perfect family with a mom and a dad who make a considerable amount of money, brother or sister and a dog and cat. I grew up in that dream. I don’t know at what point I stopped living the dream and started looking for my own version of the AD. Was it when I got my first boyfriend, when i went to college, or when I got my first full-time job. But whenever I reached that point where I started my journey and not just a part of my parent’s journey I realized that this world is a mess. How can I have my own dream when it seems like me against the world? Despite this, I am still blessed beyond what I deserve. I may not live how others expect me to or how God calls me to but I’m still loved and accepted by him anyway.

Though it wasn’t well known, this past week I was told the rash I had was shingles. Which is a disease which comes from the chicken pox virus and stress. Apparently it’s suppose to be very painful and itchy. Itchy yes but I didn’t have hardly any pain and nothing advil couldn’t handle (Advil to the rescue) Maybe I was missed diagnosed or maybe i caught it before it got really bad or I am just blessed to have a extremely mild case. What can I say now to people who have had the shingles and have had terrible pain? Why was I blessed and not them? Why do some people outgrow epilepsy or have it controlled but others like me have it lingering in the back of their mind everyday? Why does someone who is completely healthy suddenly get sick and never fully recover? Why does drunk driver live and the mom with three kids die? I could go on and on but on this side of heaven there aren’t any answers that make sense.

After some contemplation, maybe we aren’t suppose to live the AD. Why should we let society dictate how we live our lives? Putting us in this cookie cutter life plans yet still stressing that we are unique and telling us we can be whoever we want to be. It’s a trap, if we don’t strive for the AD then something is wrong with you. But if we strive after the AD and we fail then we aren’t being unique. If we aren’t suppose to live the AD then what is my/our purpose? I believe that God purposed us to seek after himself, his kingdom and his righteousness. When we seek after God our hearts become aligned with his and our desires become the same. His plan for me is different then how I planned but I wouldn’t trade it because he has taught me alot through his plan more than I could have learned on my own.

Published in: on March 18, 2014 at 1:09 am  Leave a Comment  
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