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kellyannecoaching-blog · 8 years ago

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A LiTtLe SoMeThInG YoU DiDn’T KnOw AbOuT Me!

Hi, I’m Kelly Barhorst, and I have Juvenile Myoclonic Epilepsy (JME for short....also link in the name)…..this is the part where you say “Hi Kelly!”. For some of you who may or may not know what JME is, it is a form of the seizure disorder called Epilepsy that usually forms in younger children who have absence (stare off), tonic clonic (the more known), myoclonic jerk (physical twitch ) seizures. Yes I didn’t know there were different types of seizures until I experienced these myself when I was officially diagnosed at age 14…..now I am 25 (*whew* time flies when you’re getting younger) and living in the warm suns of Arizona. I recently started to feel the urge to first share my experiences of being diagnosed and growing up with this disorder on my blog for anyone interested when I talked to family members coming home. Over this past summer of 2017 I have done a lot of healing, releasing and forgiveness around my life. Enough so that I have broken down my emotional barriers to share my personal experiences to help others, which is why I have become a life coach after receiving a bachelors in Psychology in Arizona. I have reflected on being in touch with what I went through at the time my seizures started and what events took place. Being this age, I felt pretty lonely going through all of this stuff and not being understood by anyone. Mostly people meant well, but how do you wrap your minds around a seizure disorder when you’ve never lived it or cannot see the damage? STORY TIME Let’s start a bit before the “war”, in a small town in Ohio. I was a young 13 year old girl who had been experiencing some stress at home with a sickness in the family, along with having a hard time making friends at a new school. I recall sitting bed one night with my sister in her room when I felt this small nod. It was so tiny that I thought it was maybe just me being so tired. It kept happening. Eventually, within the next school year, my stress started to heighten as well as the changes in my body. It finally showed up physically as my collapsing on the floor of my sister and I’s new bathroom getting ready for school and passing out. EKG’s, blood, and other tests were ran in hopes to figure out the cause of what was going on. We got our answer not too long after I returned to school. This is what I call “D-Day” for me. I remember vividly, being in 8th grade and going to lunch. After finishing all of my food, mostly everyone had left our table to go to the gym and play while I read my favorite book at the time “Maximum Ride”. Maybe one friend had been sitting across from be doing the same thing. Reading, yes reading, must have caused something to become triggered in side because that is the last memory I have.

MY FIRST BATTLE

If I could really describe a seizure, it would be something of this nature. Going into complete darkness….as if you do not exist. Consciously, you are not there and not aware of anything or anyone. It hits instantly for me, and time stands still in this dark void of a waiting room. Something seems (from what I am told) to take hold when I start to come to, because you could ask me anything under the sun and I will answer it full and truthfully. At some point, after the glaze in my eyes disappears I am released and return to my body with a welcoming headache of a thousand hangovers. My body feels like I have just been running for the past 3 days and on the way I pumped some mad iron at the gym while slamming my head against a brick wall. If I am lucky, I come out with no scratches or bruises. But alas, I’ve had (sometimes to me comical) bruises and scratches from a big fall. It’s needless to say, a magical moment in the family or relationship, depending on who is there.

I awoke to the paramedics and my parents standing over me saying my name. I remember thinking to myself Oh no! If my parents are here….I must have done something pretty bad! “Kelly, can you hear me?”, one paramedic spoke. “Yes, what happened?”, my voice was horse for some reason. “You just had a seizure.”, I recall asking myself what a seizure was and looking it up later. Quite a smart 14 year old! But won’t lie, it was embarrassing for me at that age to of had a seizure in front of all of my classmates. Some even thought I was dying at that age, at the same time my dark humor sort of chuckles at one of my classmates running the hall screaming that “I am dying” (if she reads this I want to thank her for alerting the teachers that day). Also to the teacher who came running and flipped a table to get to me! Well, at least I didn’t get in trouble, but I still wish the two squirrels in my head started to duke it out over that nut at my house rather than in front of my whole entire class. YIKES! Needless to say, I went home early from school that day. With my extra time I remember looking up stuff about seizures, which lead me to the possibility of me having Epilepsy. My path lead me to Dayton Childrens Hospital, where I had my first EEG (fun little party of colorful wire strapped to your head with itchy glue that can give your skin reactions) and the results were more off the chart than a politician on lie detector test. My first diagnosis was based on the fact of my symptoms and the fact my EEG had been irregular. I was also met with a following of catscans and bloodwork to conclude what has started this wildfire inside my mind....conclusion....nothing...doctors do not know. It was true I had Epilepsy, but my rediagnosis came after I switched doctors and better medication, that might come with a later post. But cannot say regardless of the medical professionals I have met, each and every one taught me something different and how to become even more of my own advocate because who really knows your own body but you. Being a young tot, I was given my Keppra pills and told to be a good girl. If I took these things for the rest of my life, I’ll be ok. I wish it was so simple. Oh and by the way this disorder will never be healed and you probably will never drive (doctors words). But if you do drive, it comes with at least 3 months (6 months to a year depending where you are) seizure free (at the time impossible). Having a child might result in you giving your child the same disorder. Especially, what no doctor could understand is the side effect each medication gives you. Walking through the fog and having the feeling that every conversation is like reading one page in a book 5 times over and over again and still not getting the freaking words. People not quite getting why you talk slower when you felt like you processed everything just fine. Being underestimated when you have all the capabilities, just need a little extra time the world won’t give or why you can’t get up out of bed as fast as anyone or you’ll risk another seizure. The emotional and sometimes personality changes different medications can cause. Being taken advantage of in friendships, relationships, and not to mention working life. The fear your parents have for your future and the confusion/ frustration you have sifting through the fog that is your mind while losing yourself. People have a underlying stigma which I feel I want to mention in future blogs. I’ve spoken to many different people and told them about my life. Once you show them a face, the fear and the stigma releases. Honestly, I have many stories, but it would turn into a long long post.

Being put into this corner at times you underestimate yourself and how many options you have out there. But really if at one point thats all you hear, why not believe it. I didn’t know until I and my family reached out to others who had gone through the same or similar things. I am grateful to my family reaching out to the people they did in my time of need. It was a confusing time especially through my teens at first with my having multiple seizures and a doctor that was hard to reach. It can be hard and at times lonely being: 1) a child with a disorder 2) a parent having a child with a disorder and doing your best

Becoming aware of diets like the Modified Atkins diet (if you have seizure, I suggest you look it up) is what started changing the chemistry in my brain. Along with going to a new doctor at the Mayo Clinic and becoming of all the other options as a adult and changing my medications to my needs. I personally drive right now, work through my own business, and strive to soon live on my own. It is possible, I have had my ups and downs where I have been set back with a seizure, but independence is possible. Maybe you’ll turn out more normal than me! But then again, who wants to be normal these days? =)

If you’re someone who has Epilepsy or knows of someone who has seizures please feel free to share. I understand what it is like to feel with Epilepsy not being as well known as it should. Becoming your own advocate and bringing light to the darkness of seizures is the best we can do. I’ve personally done this through my life coaching and my humor, because if you can’t laugh through the pain then you sink into it. WHAT I’VE LEARNED These are things I have healed from, and have learned deep lessons over time that I want to bring to people. Taking the time to reflect and realizing what I have learned and blessing the broken road makes it all worth it. I have learned a deep sense of patience and can listen to those who tend to not be heard. I tend to listen to my body way better over the years and have slowly gotten better at self love. Things like this always happen for a reason! I am perfectly imperfect as a result of it, so it is ok if I can’t get something right at first. The important part is that I have tried! I have learned if one thing doesn’t work, look elsewhere or outside the box and try everything! Take your time if needed, if someone is pushing you, they aren’t worth your time. Be grateful for what you have, not linger in what was loss. As a result the wounds, the scars, have made me a bad ass warrior along my journey to tell you the tale so far. I guess that kind of makes me cool!

If you’ve made it to this point I’d like to thank you for reading! And you’re awesome! If you liked this post feel free to look at my others and follow! https://kellyannecoaching.tumblr.com/post/165057903451/removing-the-mask

#epilepsywarrior #what its like #seizures #positive #epilepsyawareness #seizures motivation life coach

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kellyannecoaching-blog · 8 years ago

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Removing the Mask

Recently, I have been experimenting with different concepts throughout my life. Such as reaching out of my comfort zone and going to a new mental space. Which, depending on the situation, can drive me up the wall. One of the interesting facts I have learned is that it takes 22 days to change a habit.

One of my negative habits is how I have viewed and underestimated myself. Even as a teen, I had subconsciously become so afraid of being seen that I would not dare to go out without makeup or not covering my arms and legs. Being someone who has had a hard time being around others without feeling overloaded, I would cope through wearing headphones or eating. That point I didn’t understand it was ok to take breaks and be alone to energize. To take off this mask I’ve worn for so long was a difficult task. I wanted to start small and go bigger. And so my conquest started at the grocery store! No make up! No sleeves! No headphones! No problem! I started my journey first to the veggie/ fruit section. Looking down at my list and happy as a clam. At this point I got to the broccoli when a voice came from behind. “Excuse me miss”, it was a older woman who was about 5′ tall. I turned around, smiled and asked what she needed. “Would you be able to reach the parsley on the top shelf?”, I didn’t even hesitate with Midwest hospitality in my blood to reach for the item she needed. The kind woman said thank you and went along her way. This struck me since living a large city like Phoenix, I do not get approached that often for anything. I can’t even smile and say a friendly hello at strangers without getting a weird look. Since moving out to Phoenix it’s taken awhile to get used to, but I understand people have grown up with a different life here. Next, Came the frozen food section, which is where we get to the most interesting part. I am wearing my tank top going down the aisle in search for some frozen fruit. Still on the thoughts of the older lady and how she reminded me of my grams, I was smiling. I looked up to see another woman passing me smiling back as well. I decide to say a friendly “hello” to her as I pass along. She says the same back adding, “I hope you’re not too going down this way”. I chuckled and said “I’m surviving, it’s honestly a relief from the heat outside”. The lady chuckled too and we wished each other a good day as we passed onto the rest of our day. A conversation out of the blue! Even more unusual! I continue to the end of the aisle to open one of the doors to look through my options. It wasn’t a minute when a heard a mans voice from the other side of the door. “Hello ma’am, I was wondering if I could ask you for a favor?”. I close the door to find a man with tattered clothes from head to toe with a huge hat and a scent that came to match. He had a look of sorrow in his eye and sense of reluctance of asking this question. I could tell his man had been through the ringer, but he was fully aware. “I was wondering if you could spare anything to help me with some groceries?”, he asked with a cart full of groceries. Something in my gut spoke to me to give this man something to help him out and send him on his way. I gave him the small amount of cash I had in my wallet and wished him the best. As I continued my shopping, I saw this man with another girl about my age. Thought nothing of it and went onto finish my list. As I walked to the front of the store, I saw this girl paying the man’s groceries in full. When I passed by them the man waived a friendly hello and I smiled and waived on back. I ended up bumping into the girl shortly after she checked out and we started chatting. She introduced herself as... I’ll call her K. K had felt a similar gut feeling to help the man. She had just moved to the area and just came to this grocery store for the first time. Her and I spoke for about a hour about our lives and whatever interested us. Eventually, K and I both had to go on our own separate ways. But if K reads this....you’re awesome! =) This all while I had no makeup on. My arms were not covered. I had felt exposed, because it was the real me showing. When my light showed, these people came out of nowhere as a sign of confirmation. It’s interesting how the universe provides the signs that it’s ok to show yourself to the world. There’s a story behind this mask of fear and anxiety that wants to reach out as a source of light and healing to others who have felt what I have as a life coach. And that my friends, is what I intend to do! <3 If you take anything away from this. What is a mask that you’ve worn either physically or mentally? I invite you to try to take yours off for a interesting experiment and let me know your story!

#showyourbeauty #show yourself #selflove #take off the mask #happiness #my life #life coach #life lessons #intuition #scottsdale #phoenix #arizona #kindness #body posititivity #Positivevibes #anxitey #mask #shy #story of my life

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