My Epilepsy Story

I don’t think I’ve ever really just sat and talked about this, and it really was a huge part of my life.  In one day, at 12 years old, I went from an average pre-teen to the first nightmare situation of my life.

Starting when I was about 11, I was having the weirdest feelings…I would start to space out.  It wasn’t your normal feeling of spacing out…it felt like I was leaving my body.  Perhaps this is why people used to believe that epileptics were having visions.  That is, before people just believed that epileptics were insane.  Anyway…

I should point out that my memory from the events is…scattered.  I was about 12 years old, and I think it was a Sunday.  We had just come home from church (yes yes, I was a Christian at one point.  I’ll talk more about my beliefs another time), I changed into comfy clothes, and sat at the computer.  Out of no where, I started to feel that spacing feeling again.  It’s not a normal dizziness, it’s more extreme.  It’s like I’m not in control of myself.  I remember my mother coming in the room asking what I wanted for lunch, but I’m not sure if I answered her or not.  After that, it’s just…blank.  I’ve heard others accounts of what it was like, but I think it’s best I don’t remember.

Next thing I remember, I’m in an ambulance.  I don’t even really remember the hospital, all I know is that it was Hasbro in Providence.  I was sent home that night and I’m not sure why.  My only guess is that they were wondering if it was perhaps a fluke, as this can happen.  Unfortunately, it wasn’t, and the next day I was back in the hospital with more seizures.  I can’t remember anything from that time.  All I remember is being home.  Again, probably for the best.

I think I had countless tests done, and no real results.  Only a few things that were revealed were 1) my…right?…hippocampus isn’t developed normally.  It hasn’t affected me, really.  My memory is mostly normal, I think.  I have to study a bit harder to retain certain facts, but other than that, it doesn’t interfere in my life.  2) I have a small cyst located in my brain.  It’s not dangerous, and again, it doesn’t affect me in any way.  The doctors also believe these have nothing to do with my seizures, I just won the brain lottery, I guess.

I ended up going back to school a few weeks later.  As if those years aren’t awkward enough, the entire school now knew I had this problem and I was treated like I had some kind of contagious disease.  I also wasn’t allowed to be alone ever, I was constantly exhausted from new medication, and I when I finally convinced my mother to let me sleep in my room again, she hid a damn baby monitor in there.  I understand she was trying to be protective, but even now I look back and feel like it was slightly excessive.

On top of this stuff, I was also required to keep my grades up.

Yeah.

This was all during 7th grade, and in the final quarter of 8th grade, I missed being on the Honor roll by a few points and it was as if I killed someone.  Junior high was a nightmare, basically.

Anyway, my seizures were stable for a while until my doctor wanted to try to take me off my medication when I was 16.  This was a mistake, and once again, I had another seizure and I’m missing about a week.  I was so upset.  I had missed the auditions for the spring play, I had to figure out my school work by myself, and then had to adjust to returning to school.

I’m unsure if this is part of the reason, but I hated being in school with a passion.  Ever since 7th grade, it was constant chaos.

So what is my life like today?  Well, I ended up going off my medication again due to insurance issues.  Yay, adulthood.  I kept some by my bed in case I felt any of those strange spacey feelings, which I learned were auras, but the strangest thing happened…they never came.  This was back in…February I believe?

Now, let me point this out…DO NOT GO OFF YOUR MEDS WITHOUT TALKING TO A DOCTOR FIRST!  I know this was stupid, and if I didn’t have trouble with my insurance, I would probably still be on them.  However, it is an incredible feeling to be off medication.  I still have to be careful, and now that I finally have everything settled, I’m going to go back to a doctor (this is going to be fun to explain without being judged).  But I’m more awake, I’m more motivated, I feel like I’m perhaps recovering.

For those wondering, yes, it is possible to “grow out” of your epilepsy.  It’s just uncommon I believe.  Maybe it finally did happen for me.  I have also been eating healthier and taking care of myself, so I wonder if those are connected as well.

Well, that’s that part of my life.

Bye for now.

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Virtual Reality and Pie!

Rob’s vacation came and went.  We actually didn’t get to do many things that we wanted, but that doesn’t mean we didn’t enjoy the week.  It’s nice just being together once in a while!

Last week was mostly just finishing up with my last week of Anatomy and Anthropology. Between this and other personal stuff going on, when we got the chance to relax this week, we took it.

We did pick up the PlayStation VR, though!  It’s such a sleek and nice looking set, but more importantly, it’s so much fun to try.

It was a little tricky to set up, although I’ve heard this one was actually easier than other VR sets.  But once you get going, it’s amazing!  If you’ve never tried VR, I highly recommend giving it a shot at least once.

The first game I tried was more of a VR experience underwater.  It’s so beautiful.  I wanted to touch the fish that came to say hi.  I was standing in a cage and was being submerged deeper and deeper.  I knew that the terrifying part was coming, but I still wasn’t prepared for it.  I selected the shark attack program, and yup…it’s scary!  What’s odd is you know it’s not real.  You tell yourself over and over that it’s not real, yet you still want to grab the sides of the cage and you still think that this beast is going to get you!  I won’t give too much away in case anyone wants to try the shark attack experience for themselves (my husband got the bundle, so I’m not sure if it comes with the headset normally), but I highly recommend sitting if you have bad joints!  You will jump!

I also tried Job Simulator.  As boring as it sounds, it’s actually pretty amusing.  You are in a futuristic simulation program of what the robots believed used to be real.  I personally loved the “gourmet chef” one!  I kept wanting to throw stuff at the waiter.  Be careful of your surroundings, though…I tried reaching over to throw something at the waiter without realizing how close I was to something.  My finger is still bruised…

If you are susceptible to migraines or have a condition like Epilepsy, please be careful!  It is very easy to lose track of time and become dizzy.  I also unfortunately learned the hard way that I can’t play games with too much motion with the VR, as it does really mess with my head.  Still, the games I do get to play are very fun!

Another smaller thing we did was apple picking.  I live in Rhode Island, which normally I can’t stand and can not wait to move out of someday, but I will say this…we have beautiful falls!  Despite the fact that today is a bit too warm for my taste.  Our leaves are beautiful, the weather is normally beautiful, the smells and flavors…I love everything about fall and it’s one of the only times of the year I don’t mind being in this state.

The apples were perfectly ripe.  If you haven’t tasted a fresh picked apple before, you’re missing out.  There’s something about them that just tastes so much better!

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And we were able to get a lot, too!  Whenever we go apple picking, I like to make a yummy dessert as well as munching on the apples themselves as snacks, so we did half red apples (perfectly sweet!) and half green (delicious and tart, perfect for desserts!)  Last time I made apple crisp, this time I decided to try something that I usually am horrible at…pie!  And guess what?  It was delicious!

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We made a dutch apple pie because I love the crumbly top, but the filling was so sweet and delicious…and the crust!  Mmm!  I love a good, savory crust, but have always failed at making them until now.  This one was perfect!  I actually got the recipe from Food Network Magazine, but most pie crust recipes are similar.  It’s all about practicing.  Also, cut the butter with a very sharp knife, and handle the crust with your hands as little as possible!  A little trick I learned was to pour the dough on to a large sheet of parchment paper and knead it using the paper.  This way, the butter won’t melt as fast.  You want some butter chunks for that yummy flakiness.

So that was it for our week, really.  Now we’re both coming down with something…boo!  Oh well, time to push the green tea!

Bye!

Lazy Sunday AND Monday!

Happy Monday!  And yes, it actually is a happy one for us, as it is a day off for both of us.  I slept in, did my workout, showered, and now relaxing with some Sims 4 as my husband starts his vacation playing Destiny.  It’s funny that people seem to think this is a common occurrence for us, but it’s not.  We actually rarely have time to relax.

Yesterday was also pretty relaxing, including it being a bit of a rest day for me.  Rob went out that morning, I did a quick stretch routine, then played Animal Crossing New Leaf.  I’ve seriously been addicted to this game for…3 years now?  I absolutely love Animal Crossing!  I also was able to get a ton of cleaning done yesterday, and in preparation of spending a night with friends, I made some raw cookie dough balls…eggless, of course!  I forgot to take a picture, but the recipe is simple enough.

1 stick of unsalted butter
1/2 cup white sugar
1 cup brown sugar
1/2 tsp vanilla extract
2 to 3 tbsp milk
1/2 tsp salt
2 cups of flour
1 cup chocolate chips

Cream the butter and sugars together, then add in the vanilla and milk.  Next, mix in the salt and flour until it makes a stiff ball.  Make sure to mix in the chocolate chips as well.  Break off pieces and roll them into little balls, then store in the fridge.  It’s that simple!  AND they’re delicious!

That night, we went to friend’s house for a much needed (and it hasn’t happened in a long time) game night.  I made the cookie dough because she was setting up a chocolate fondue, and I figured they would be perfect to dip in!  I also got to meet her new puppy…

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Isn’t she a cutie?!

We were prepared to play different games during the night, but it turned out to be a Rock Band night…what can I say, we’re music geeks!  I was so happy to belt out some Nightwish and Halestorm.  I feel like music is a great way to bring people together.  We almost have similar tastes.

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The nerd at the drums would be my husband, by the way.

So yes…fun night that was much needed and hasn’t happened in a long time.

I’m hoping that I’ll have more interesting stuff to post about soon.  As I mentioned, Rob is on vacation this week so we’re hoping to do a couple small things.  It’s also the last week for my Anatomy and Anthropology classes.  Woo!   Thanks for reading!  Hope you guys get the chance to relax too!

Exercise is hard!

Hi, I’m Sarah, and I hate exercise.

“Hi, Sarah.”

No, seriously.  Ever since I can remember, I have hated sports and exercise.  Gym was a requirement for my schools ever since first grade, and when we started choosing what kind of gym classes we wanted in high school, I tried my best to select either “fitness walking” (which was honestly just walking around the track until gym class was over) or archery (exactly how it sounds…I LOVED taking this class).  My freshman year, we were all forced to take flag football first quarter, but I was able to get out of this due to having epilepsy.  Senior year, final quarter, it was senior softball…the sport which is the bane of my existence.  Ok, nothing really against the sport…my nieces and adorable little cousin play…I was just always horrible at it.  How did I get out of that one?  I dislocated my kneecap goofing off backstage of a play.

I’ve never been so grateful for such a painful injury.  Little did I know it would lead to 10 more years of pain and…4? 5? more dislocations in both knees.  But anyway…

So yeah.  Exercise.  I hate it.  I’ll walk, I’ll dance (when I can), I’ll even lift some weights, but don’t make me run, do lunges, or play sports.  Nope.  And another problem for me?  I have social anxiety, so going to a gym is not in the cards!  I force myself to socialize as much as I have to at the moment.

Here’s the thing though: exercise is actually good for you.  I know, right?  How can something so horrible be good for you?!  Well, unfortunately, it is, and I hate slightly understanding why.  Stronger heart, stronger lungs, better digestion, yadda yadda yadda…So what do I do if I hate exercise and the gym so much?   I workout at home.  I know, I know…motivation is the hardest part for that.  But would it be any different than motivating yourself to go out to a gym?  Honestly, I think it’s easier.  I can workout in my living room with just a sports bra and shorts and not feel self-conscious!

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I also hate sweating!  Bleh!

There are tons of home gym websites, and they have different specialties.  At the moment, I’ve tried 2 and I love them both, so I’ll talk about them a little.

First: Daily Burn.  These exercises will kick your butt.  They have a good beginner program, and the trainer is a little corny but insanely friendly and motivational.  The only thing I didn’t like about their beginner program was the one routine that was all leg workouts.  As I mentioned, that dislocation in my knee led to more dislocations and now they’re really bad.  I’ll talk about that another time, all I’ll say now is that I have a very hard time doing lunges and certain other leg workouts.

They have other great programs as well, such as pilates, yoga, and hiit.  You can pick and choose different workouts, but it really emphasizes the use of following the programs.  Overall, I’d say it’s a 7 out of 10.  I enjoyed it, might go back someday, but I’ll keep looking around first.

The second website I tried is FitnessGlo, which I’m currently using still.  I honestly have to say I think I like this one a little more than Daily Burn, due to it’s flexibility.  And their beginner workouts are real beginner workouts.  If you do choose one of their programs, the beginner program starts with 10 minute workouts to ease people into the process.  Then they slowly pick up time and intensity.  I personally love this, because I truly feel that just throwing someone into an intense workout program after they haven’t exercised in a while is a horrible way to go.

What I also love is that they have some workouts that are specifically knee friendly.  They have routines designed around strengthening the legs, thighs, and around the knees that don’t include lunges or squats.  So if you’re like me and you struggle with knee injuries, these are great.

The downside to this website is that it seems to be somewhat geared towards women.  I know, you’re probably thinking that as a woman, I shouldn’t complain.  They do have a couple male trainers and men are able to use the video as well, but it just give that hint that it’s mostly aimed at women.  I’m still trying to convince my husband to give it a try, though!

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Btw, the water bottle is from World Wildlife Foundation (I’m not sure if they still carry it) and the yoga mat is a Wii Fit yoga mat I bought at Toys R Us when my husband worked there.  Yup…I’m cool…

For both websites, the prices are pretty reasonable.  They’re about the same as most gyms, I think.  Daily Burn I believe is $10 and FitnessGlo I think is $12.  I suggest you take your time, test them out using the free trials, and see what works for you.  Any recommendations for other exercise websites?

I will also point out that on YouTube, you can probably find some great free workout videos, too.  I love  the channel “Yoga with Adriene”.  She knows what she’s doing, but she’s so laid back and definitely has a sense of humor.  I love fitness and health people that don’t take themselves to seriously.  Life is too short for that!

That being said, I want to leave this post of this note: Please remember that the goal is to get healthy.  If weight loss comes with it, cool.  If not, don’t stress!  Every body is perfect, whether it’s petite or plus.  Aim for healthy, and love your body for what it is!

It’s Never Too Late to Start Again

“I’m too old.”  “I’m too weak.”  “I can’t do that.”  “I’ve made too many mistakes.”
Many of us want to start over.  We want to start a new career, go back to school, get healthy, etc.  Many of us also fear that we can’t do anything to change the situations we’re in.  Here’s the thing:  I’m too stubborn to believe this.

I am 28 years old.  I went through my school years, kindergarten through high school, as an average student.  I never was the perfect straight A kid, but I wasn’t a trouble maker either.  I was more concerned about being a kid, playing with dolls and video games, than worrying about what the future would bring.  As a teenager, I was actually pretty boring.  I preferred to stay inside playing games and reading than going out partying.  So what happened between those years and now?

My father was diagnosed with ALS when I was 16, almost 17.  In 2006, at 18, I graduated from high school.  I started attending Rhode Island College that fall, and started my first part time job the summer after.  Slowly, I became more and more depressed and anxious about everything that was going on.  I started cutting myself, over eating, skipping classes, and eventually dropped out of college in the fall of 2008.

As I mentioned though, I’m stubborn.  I wasn’t ready to give up on my college education, so as soon as I dropped out of RIC, I applied to Community College of Rhode Island.  Before I was able to start, my father passed away in the spring of 2009.  I felt like I was living in a fog, and it was one of the worst experiences I would ever go through.

Shortly after my father passed, a friend of mine and her boyfriend introduced to their friends.  I started spending more time with them, started at CCRI that fall, and thought I would feel a bit better.  I found a new job as a cashier, and in the spring of 2010, I started dating one of those friends, Rob.  Of course, this led to some soap opera styled drama when I soon realized that nearly everyone in that group of friends had feelings for him as well.  This led to a huge rift that I did not mean to create, but I’m glad I stayed with him.  Only 4 of us, (me, my boyfriend, my friend, and her boyfriend) stayed together.

That fall, I had my breakdown.  My mother had her first stroke, I left my job without a word, and I started skipping classes again.  I finally started going to counseling, and my friend got me a job working at a center for children with disabilities.  However, she also started encouraging me to drink more and demanded me to tell her everything I was feeling.  It was hard to see at the time what a painful, toxic relationship I had with her.

In 2011, we had a huge fight, this time she told me I was too clingy to Rob and that I was keeping too much from her.  I was considered out of control in her eyes.  She compared our relationship to her’s and her boyfriend, and I once again felt everything spinning out of control.  Our friendship was over, and months later, her relationship with her boyfriend also ended after she cheated on him.  We tried to speak again, but something within her changed.  I feel sorry for her and hope she gets the help she needs, but when you are trying to figure your own life out, you need to let go of that toxicity.

2012: I found out my financial aid would not cover any more of my tuition at CCRI because I was there for too long, and so I decided to stop attending and get a full time job at a daycare.  That job turned out to be a nightmare, and I left a little less than a year later.  After that, I got a job as a housekeeper at a “spa”, if you can call it that.  I applied to Johnson & Wales University after quickly realizing I did not want to stay as a housekeeper, but again dropped out quickly when realizing the pace was too fast for me and the structure was too strict.  Baking was an art to me, not a science.  And it was meant to be fun, not something with military-like structure.

I felt lost.  I was stuck at a job I hated, I thought I destroyed any chance I had at college, my health was going downward, the only thing going well was my relationship with Rob.  As happy as I was with him, I will say now that the only person that can ever bring you true happiness is yourself.  A spouse, a friend, a family member…they can support you, but they can’t fix you.

That was until I realized I was only 2 classes away from a General Studies associates degree.  That was it!  Would it help me find a job?  Most likely not.  But it was the boost I needed to get myself on the right path.  I finished those two classes, obtained my associates, and found myself on a path once again.  It was a rocky one, but at least there were no pits in this one!

I applied to Southern New Hampshire University online due to my husband and I only having one car, and needing the flexibility.  I am less than a year away from obtaining my bachelor’s degree in Psychology.  I have plans to obtain my masters after.  I have goals.  We are married now as well!  Life is always rocky, but at least I’m finally finding my way.  So after 3 (now on my 4th) schools, 6 jobs (5 of which were unfulfilling), and changing my major 6 times, I am finally on the path I need to be on.

No, it was not and is still not easy.  Everyday is still a struggle with depression and anxiety.  Everyday, I have to worry about something, whether it’s school, money, my health, my husbands health, or even my dog’s health.  Life is throwing obstacles in our way left and right…I’m just finally learning how to dodge them.  I told you…I’m stubborn.  I’m not ready to give up without a fight.