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Sleepless in…Dayton (Part 1)

By the end of summer 2016, I had been to two different neurologists and on 4 different seizure medications. I still didn’t have answers. I didn’t even have an official diagnosis. The meds either didn’t work to control the seizures or the side effects were so bad (my body hates medicines) that I had to be taken off of them. I had also been to a homeopathic doctor and there was no help from the natural end of the world either.

So my doctor decided it was time to do the test I had been avoiding for 3 months: EEG monitoring. This is where you go into the hospital for 3-5 days (you don’t know how long you need to be there until they start monitoring and gathering data) and they do a continuous EEG on your brain. I had been dreading this test for a couple reasons: a) they take you off all seizure medication during it and I wasn’t looking forward to that. b) I was going to be missing my favorite week of camp back at work. c) what in the world was I supposed to do in the hospital for 3-5 days hooked up to all these machines??

My mom and sister both came up for the testing and bright and early on August 9th, my mom drove me to the hospital. We got checked in and they started hooking up all the wires to my head and chest and then they wrapped my head to prevent the wires from falling off. The nurse wrapped my head very tightly and she told me that it was because she didn’t want to have to redo it. I actually still have a mark on my forehead from where one of the electrodes was pressed into my head. During the testing you are on video, sound, and EEG record and a tech watches you 24/7. I had this brilliant idea that I was going to use this time to rest my poor body. It needed rest so badly so I planned on getting as much sleep as possible. Since we had had to wake up early to get to the hospital, once everything was hooked up, my IV was in place, and all the nurses left the room, I settled in to take a nap. I was just about asleep when the tech came in the room.

“Hey, honey. You know you can’t fall asleep, right?” Uh…nooooo. “They have you on sleep deprivation right now so we need to keep you awake for roughly 21 hours and then we’ll let you sleep for 4.”

Oh. That would have been nice to know the night before because I probably wouldn’t have stayed up late talking with my sister with this nice thought in my mind of sleeping at the hospital the next day. Suddenly I felt overwhelmingly tired and I was stuck sitting in bed… this was going to be a long day.

When my first meal arrived that day, I bowed my head to pray and said, “Lord, thank you for…” and I started to cry. It occurred to me how unthankful I had been for this opportunity. There are so many people in the world who don’t have access to medical care or the financial means to use it and I had be so ungrateful for my chance to do this testing. I had been caught up in how much I didn’t want to go and how unpleasant it was going to be that I had forgotten to thank God for giving me this chance to find answers.

 

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

 
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Posted by on January 25, 2017 in The2016Story

 

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The Fear of Seizures

You know I think a lot of people live with fear. Fear of spiders, of snakes (which is a completely rational fear), fear of burglars, etc. But there is another kind of fear that I never knew about until this year and it resides deep inside a person.

When I had my first seizures on that day in April, I told the doctor that right before they happened my body had a sense of fear. And I couldn’t explain it. It is like my body knew what was about to come and was already afraid, although my mind was clueless as to what was going on. There was this sense of fear and impending doom right before the actual seizure came and my body tensed up.

As the summer progressed, the fear got worse. I learned different things that triggered my seizures and for me, those things were sounds and vibrations. I think it would be a little easier if they were triggered by flashing lights or something like that but it is really hard to control was you hear. For instance, during the summer, some friends and I went to see Finding Dory when it came out. There was a certain part of that movie that had a sound in it and that was the first time that I found something that actually brought on a seizure. I had never been so sure of anything before- but I knew that sound had caused that seizure. And I still haven’t re-watched that movie- because I’m afraid to. Here’s another example. I do a lot of laminating in the office during the summer and I actually like to laminate. One of my favorite things to do is wait for the laminator to heat up and then lay my arms and head down on it because it’s really warm and cozy. Did you know laminators also make a buzzing noise and they vibrate? It wasn’t a good combination and instantly I had a seizure.

It was terrible to suddenly have all these everyday things becoming things to be afraid of. Things like hearing motorcycles, watching firecrackers, or having someone bounce their leg on the same bench as me. One day, I got online to read about things that could cause seizures and just reading about them triggered one in me. Even writing this post I have had to stop several times. Slowly I slipped into living in fear. Fear of all the things that were causing me or could cause me to have seizures.

If you have never had a seizure, you can’t imagine what they feel like. And mine are very mild. I could have one while talking in a group and probably no one would notice. The build up to them is terrible. It feels like you have a knife hanging over your head. A feeling of dread and impending doom. That feeling might last an hour and the seizure may never even come or it might just be a few minutes. And then the seizure itself comes and all my muscles tense up as tight as they can for a moment or two and then relax. It almost hurts. It hurts my head. Usually I am so tired afterwards that I just want to sleep forever. At one point in time, I was having 10-15 of these a day.

Can you imagine that fear? During that time (I was able to read more again), the Psalms came alive to me in a way they never have before. David was afraid a lot. And I mean a lot. And he wasn’t ashamed of it; he recorded it at the inspiration of the Holy Spirit. He knew where to turn to when he felt fear and he encourages us to do the same.

I’m not going to copy all of Psalm 55  here (I do encourage you to read the whole thing!) but let me pull out parts of verses for you:

“Give ear to my prayer, oh God, and hide not yourself from my plea for mercy…I am restless…My heart is in anguish within me…Fear and trembling come upon me…”

These verses explain how David was feeling at this point in his life and they perfectly describe how I felt also. Then you get to David’s solution:

“But I call to God, and the Lord will save me…he hears my voice…He redeems my soul in safety from the battle that I wage…Cast your burden on the Lord and he will sustain you…”

This Psalm was such a comfort to me! To realize that even David felt anguish and fear but he knew where to fly for comfort. He knew that his comfort came from the assurance that God held his soul in his hand and I came to know that as well.

That in the end, no matter what happens to my body, my soul is safe.

 

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

 
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Posted by on January 23, 2017 in The2016Story

 

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Stolen Identity

Like I said originally, when all of this started I was leading a very busy and active life. Gradually though, I was not able to do all the things I had been doing before.

Believe it or not, one of the first things to go was my ability to sit and read. I had such bad headaches all of the time that to sit and read a book was impossible. I would wake up in the morning and open my Bible and cry because all of the words just blended together and hurt my head so bad. My housemate, Natalie, started leaving one piece of paper on the table for me each night with a verse on it. I would find it in the morning and meditate on that verse. For a while all of the papers laid out on my bedroom floor so that I would see them every day (they almost covered the whole floor) but now they are in a scrapbook.

Obviously, with the ability to read gone, school was out of the question. I called my school and put a hold on my studies. That was really hard because I had these grand plans of where I wanted to be by the end of the year and I saw them dashed to pieces.

There came the day when I could no longer work out or run. I love running. I never realized how much of a stress release it was for me until I couldn’t do it anymore. Call me crazy, but there were days when I literally sat and cried because I couldn’t go out for a run.

Although my license hasn’t actually been taken from me, Ohio law says that you have to be seizure free for six months before you can drive so I was not and I am still not able to drive and had to either walk to work or rely on others for rides (which, by the way, is very humbling.)

There were days when I felt like my job was being taken from me. When I wasn’t able to do it as well as before or I had to leave early because I felt so bad. Days when my boss sent me home to rest because I looked like death warmed over and he was concerned. Everyone was so gracious to me but I WANTED to be there and I WANTED to do my job well!

And I felt empty. Like everything I loved to do in life was taken from me and I didn’t know who I was anymore. And that’s when I realized it. That’s when I realized that instead of my identity being in who I was in Christ and what he has done, it was in all the things I did everyday. It was SO hard to admit that to myself because I desperately wanted my identity to be in Christ! And I cried my eyes out because I realized that I had been putting other things before Christ. But once I found the truth, once everything was taken away from me and Christ was the only thing I had left, it was easy for me to see what I had been doing with my life.

And, you know what? It was freeing. It was freeing to realize that all I had to do was turn to Christ and I could rest assured that forgiveness was already there for me. That his grace was ready and waiting for me and I could take refuge there. And there were days when I felt helpless and empty and didn’t even know what words to pray anymore, but he brought me through it and became the strong tower and refuge that he is described as in the Bible.

Psalm 61:1-3

“Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.”

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

 
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Posted by on January 21, 2017 in The2016Story

 

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An Expert in Passing Out

You know, of all the things I had hoped to excel at in life, passing out was at the bottom of the list. Actually it wasn’t on the list.

The second medicine I got put on is one that you have to work your way onto so it took roughly four weeks to get to the dose my doctor wanted me at. I had passed out twice on the previous med (which I was only on for about 4 days) so my neurologist switched me to a different one. I do have to say that the new one (Topamax) did a great job at controlling the seizures. But it did a terrible job at causing me to pass out.

I had a little bit of warning. I could feel it coming on like you can feel the tension in the air before a bad thunderstorm comes. Sometimes that feeling would last for an hour before and sometimes it was just a couple of minutes. Then usually about 15 seconds before I passed out I could tell for sure that it was coming. There were a couple of my friends who could look at my face and tell before I could that it was time to find a place to lay down. That was the goal- lay down BEFORE you pass out.

It got to the point where I was almost on a schedule. It would happen just about every other day. You know, it’s a very weird feeling to wake up in the morning and know that at some point, and in some place during that day, you are going to pass out. I’ve passed out in so many different places. When you don’t have much warning, you just find the most out of sight place close to you and sit or lay down. I’ve passed out in my yard, in the office, at church, so many different places around the Farm, and the list goes on. Friends have caught me from falling, have laid me down, and have held my head while waiting for me to wake back up. I was usually only out for 20 seconds-1 minute. It’s pretty sad when passing out barely ruffles your day.

I had to practically beg my doctor to take me off Topamax. She didn’t believe that the meds could be causing the issue and still thought there was something the matter with my heart. I had passed all the heart tests with flying colors and my heart had been pronounced very healthy by the cardiologist. She finally agreed to start taking me down off the medicine and guess what? It takes four weeks to come off of it too. So the passing out continued.

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I passed out a total of 32 times while on Topamax. My best friend got me a cake when we hit that mark because everyone should eat some cake if they have passed out that many times. God was so gracious to me though! There were so many times that I could have fallen and hurt myself but I didn’t. He provided close friends who know me better than I know myself (apparently) to catch me and care for me. He protected me from harm and I am thankful for that.

 
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Posted by on January 19, 2017 in The2016Story

 

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Thoughts On Comforting Others

Through all of this I have learned there are many different kinds of people when it comes to comforting someone who is in a difficult situation. A few examples:

-There are the people who tell you to suck it up, buttercup. If I was honest, I am usually one of these people. You’ll be fine, keep going, get over it. (Actually, I usually say, “Drink more water; that cures everything.” Turns out it doesn’t. Huh, who knew?) Sometimes though, things aren’t fine.

-There are the people who toss Bible verses at you. The people who don’t really know what’s going on so they just grab verses to tell you. They mean well; they really do. But let me tell you, coming from someone who has been through something like this, it doesn’t always help. This sounds terrible so I’m trying to find the right words here. Most of the time, I already knew the truth. I knew what God’s word had to say and to have someone quote the verses to me (especially if they didn’t understand my situation) was not usually helpful.

-Then there are the people who understand. Most often, these people have also been through rough times and know how to comfort others. They know that what you really need is a long hug and that words are not always the answer. They know when it is time to talk and when you just need to sit and cry together. God has blessed me with several friends like this.

The Bible tells us to weep with those who weep but how often do we really take the time to know someone’s situation well enough to do that? I don’t want to be that top person anymore. I want to be someone who is compassionate towards others because each person I meet is going through something that I know nothing about. I have been so convicted about how judgmental and harsh I was before this. Everyone struggles with things that no one can see. I want to be slow to judge others by what I see. And I want to be quick to love. Quick to listen. Quick to share Christ.

 
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Posted by on January 17, 2017 in The2016Story

 

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Tests and More Tests

So apparently ‘abnormal brain waves’ is a fancy term for “we see something that could lead to seizures but they aren’t actual seizures.” I also found out at that appointment that they had seen my heart (they did an EKG at the same time as an EEG) doing some funny pauses.

Right away, they put me on a seizure medicine and set up some appointments for some more testing to be done. Two days after being on the med, I passed out. Now, I have never passed out before and when it happened again two days later they quickly switched meds. But the passing out didn’t stop.

Hence we enter what I call the Test phase. This is the phase where doctors run all sorts of tests on your body to rule out different things.

-The first test was an MRI. That was one of the most the scary ones because they were checking for a tumor in my brain. My housemate, Natalie, and I affectionately called the tumor a ‘watermelon’ when we prayed against it. I’m thankful that I’m not a claustrophobic person because that would have made things much worse. Nope. No watermelons in my brain.

Then they started running tests on my heart to see if my heart was actually causing the issue. I have to say, the cardiologist was my favorite doctor and I should have taken him a plate of cookies. Finally someone who sat and listened and seemed to care! BUT the heart testing was the worst.

-First came the stress test. Basically, they put you on a treadmill while they monitor your heart to see if anything happens. They stress out your heart. Now, at this point, I was having issues with the passing out and I told the nurse that. She told me that if I started to pass out, she was probably going to try to bring me back using smelling salts and continue the test. Okay, I thought, that’s fine. HAVE YOU EVER USED SMELLING SALTS????! It’s not like in the movies, people, where they wave the bottle under the person’s nose and they gracefully wake back up. Oh no. Smelling salts come in this little tube that they snap open under your nose and they smell like ammonia. For some reason, I had it in my mind that they would smell good, like flowers or chocolate or something, but they smell like ammonia and they make you choke and gasp and your eyes burn and water. UGH. Sometimes I still get the memory of that and choke a little. They used smelling salts on me twice during that test because I passed out twice. After the second time, they stopped the test.

-The second test was an ultrasound on my heart. Which was actually super awesome! I got to see my heart moving and beating. God’s design is incredible and I was able to mention that to the nurse.

-The third test was a tilt table test. For this one, they strap you to a table and lay you flat for 15 minutes or so, monitoring your blood pressure and heart rate. Then they quickly tilt the table up to see if you pass out or not. In my case, that did not cause me to pass out, so they brought out some nitroglycerin and had me put a tablet under my tongue. Do you know what nitro does to you? It increases your heart rate incredibly. Within 15 seconds of that tablet dissolving I had passed out and she laid me back down.

These tests are hard. Although I had friends go with me to the hospital, no one can be in the room with you during the actual test. And it’s hard to be alone and at the mercy of others. I came out of most tests crying, feeling like I had just left a torture chamber, instead of a doctor’s office. I can’t imagine being one of those nurses and having to do that to people all the time.

Do you know what else is hard? It’s hard to be kind to some doctors. There is such a balance between “I know my body best and what’s going on” and “You are a doctor and know way more than I do.” Natalie went with me to all of my appointments and we learned a lot about tact. How to say things with tact. For instance, (yes I have her permission to post this) at one point, a doctor was telling me something and I knew it wasn’t going to work because I had already told him that I tried it and he wasn’t listening to me. Natalie looked him right in the face and said, “No, that’s garbage!” We had to have a discussion later about how it’s not really kind to tell people what they are saying is garbage and we talked about tact.

But if I think about my own life, how often do I say things without thinking them through? How often do I give the harsh answer that stirs up strife instead of the soft answer that turns away wrath?

How about in your life?

 

 
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Posted by on January 15, 2017 in The2016Story

 

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The Waiting Game

I’ve learned a lot about doctor’s appointments in the last nine months. First off, did you know that many doctors (at least all the ones I saw) don’t actually check your height anymore?? They just ask how tall you are and write it down. Funny thing though, they DO still check your weight. Hmm. Like people aren’t honest or something. Secondly, doctors must not trust anybody. They send their nurse in to ask you a bazillion questions and then they come in and repeat the EXACT. SAME. QUESTIONS. Thirdly, I’m pretty sure neurologists must be the highest paid people on the planet. They basically spend 10 minutes in the room with you and BAM! there goes a few hundred dollars.

Those random thoughts aside, I’ll pick up TheStory now. We went to see my doctor the very next day. And you guys, this is just how awesome the Lord is. I didn’t actually have a family doctor until a few months before this when I decided it was time to adult and get a check-up. After doing a lot of looking I finally found one that I liked and she is wonderful. Isn’t God’s planning great? I’m so thankful that when all of this started I already had a doctor I could go to…and she has walk-in hours first thing almost every morning. 🙂

I had already guessed what she was going to tell me. You, see my brother has epilepsy, so I know the signs and symptoms of a seizure and I had a suspicion. I outright told her that’s what I thought it was that had occurred but I wanted to know WHAT IN THE WORLD AND WHY AND HOW AND EVERYTHING IN BETWEEN. She agreed and ordered an EEG for later that week and made an appointment with a neurologist.

Have you ever had an EEG done? They make it sound very relaxing: “We are just going to hook all these wires to your head and maybe flash some lights at you and we may want you to try to take a nap.” Easy-peasy. Uh…no. They flash lights right in your eyes until you cry and your head is pounding and they make you hyperventilate to the point of almost passing out. Simply put, they are trying to induce you to have a seizure so that they can record it. Not a fun experience.

Later that week I got a call with the results from my test. They did not see any exact seizures, per se, however they did see some abnormal brain waves they would like to discuss. Ummm…can I have some more explanation, please? What exactly are “abnormal brain waves???”

Do you know what else I’ve learned about Doctors? They involve a lot of waiting. You sometimes have to wait weeks or months to even get an appointment. You have to wait to see the doctor and wait to get results. Even after you get a call with your results, you have to wait for the explanation. The receptionist was not able to give me any other information and I had to wait until my appointment with the neurologist.

Sigh. Waiting involves a lot of trust in the Lord, you know. Sometimes waiting can be the hardest part of difficult journeys. Whether it’s waiting for a job opportunity, or a prayer to be answered, or a brain issue to be explained, waiting tests our trust in God because we have no control. We have to trust that he knows best and we have to learn to be still before him. And boy, is it hard! And it’s something I had to learn.

So I waited.

 

(Disclaimer: Please don’t be offended if you are a doctor! I really do appreciate you all!)

 
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Posted by on January 13, 2017 in The2016Story

 

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