Moving On

This will be the last post in the series The2016Story. Not because that Story has ended but because it is continuing. I will continue to update and write but 2016 is over and you are now caught up on it. I feel like I barely scratched the surface of everything that actually went on, but I did my best. Some things are just too difficult to write about.

It was the hardest year of my life but I actually think I am having more trouble now than all through the summer and fall of last year. I am struggling to move on. How do I adjust my life to this change? How can things ever go back to the way they were before? It reminds me of a part of one of my favorite movies (Lord of the Rings):

“How do you pick up the threads of an old life? How do you go on? In your heart, you begin to understand, there is no going back. There are some things that time cannot mend. Some hurts that go too deep, that have taken hold.”

Now, I believe that our God is able to heal those hurts but I don’t think my life will ever be the same again. In some aspects, that is a good thing. I don’t want to forget what God has taught me or how I’ve grown to rely on him and on others. But to be completely honest, some nights I lay and cry because I want my old life back. I want to go through a day without headaches, seizures, or pain. I want to be able to wake up in the morning and actually feel refreshed, ready to take on the day and serve Christ. I want to be able to do the things I could before and I wish that none of this had ever happened. Which reminds me of another Lord of the Rings quote:

“Frodo: I wish the Ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.”

It has been a constant prayer of mine that God would be glorified in my life no matter what happens. No matter what I’m going through, I want to love others, share the gospel, and see his Name lifted high. And that is my prayer for 2017.

(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.)

 

Answered Prayers

I don’t make New Year’s Resolutions. I haven’t for a long time now, but I do usually pick something in my life that I need to work on and pray for the Lord to help me in that area.

On January 1st of 2016, I asked God to make me a more compassionate person. I realized that I rated very low on the compassion scale and I wanted to be more tenderhearted and sensitive. You see, I’m usually a get-over-it, you’ll-be-fine kind of person. So I prayed and asked God to teach me how to give more compassion to others in 2016.

Did you know that God doesn’t think the way that we do? You probably did. Actually there is a verse that goes with that, “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth so are my ways higher than your ways and my thoughts than your thoughts.” Well, in MY mind, God was going to make me more compassionate by sending someone to me that really needed compassion and mercy and I would suddenly acquire tons of compassion and have this wonderful opportunity to show it to them. I had it all figured out. But as the verse says God’s ways are not my ways.

Instead, he made it so that I was the person who needed compassion. I needed the people around me to be sensitive and tenderhearted and compassionate. I needed people to care for me, encourage me, and show me gentleness and comfort.

And that’s when it hit me. I didn’t know what compassion was before. If God had done things my way, I wouldn’t have known what to do because I didn’t know how to comfort someone or show them compassion. I needed all those people to teach me and show me first before I could learn to show it to others. I desperately wish I could have learned another way but I know that God’s will is perfect and he is always good.

I am thankful that God placed those people in my life to be living examples of compassion. So you see, God really does answer prayer. I have learned so much about how to comfort others who are going through a difficult situation. I definitely still have a lot to learn and I still pray for compassion often but I am thankful that God didn’t do things my way. I am thankful that his thoughts are not mine and his ways are higher than mine.

 

(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.)

 

The Medication Game

So the appointment in Cleveland was at the end of October and it is now February. What has happened since then, you ask? I’ll tell you.

It has simply been a game of trial and error with meds. Trying to find the right medication or combination of them that will control the seizures with the least amount of side effects.

Actually, wanna hear a funny story? Oh good. So a little while back I was on these two medications and they were actually doing a fairly good job at controlling the seizures. I was beginning to be hopeful that we may have found the right ones. And although the side effects weren’t great, I had decided I could live with them. There was just one teensy-tiny issue. After I started the combination, once in a while I would have rapid heart rate problems. Like so rapid that I could see my heart beating at the front of my neck and then my breathing would increase and sometimes I would pass out from it. Being an expert in passing out, it didn’t bother me too much and since this would only happen once a week or so and I didn’t want to be taken off of these meds that finally seemed to be working, I didn’t call my doctor about it. Well, some friends convinced me in the end that rapid heart rate isn’t actually something you should brush off and so I called the doctor’s office and left a message. Are you aware that neurologists FREAK OUT anytime something with your heart goes wrong? They are calm as cucumbers until you mention something odd with your heart and then it’s you are probably dying and should go to the ER IMMEDIATELY! I’m not sure I’ve ever talked to a nurse on the phone where I felt like I needed to tell her to calm down. Needless to say, I was taken off one of the medications the next day and the heart issue went away. But the seizures came back. (Sorry; that wasn’t really a funny story, was it?)

In case you haven’t gotten the idea yet, my body hates medicine. Every time I switch to a new one or my dose changes, it feels like I’ve been tied up behind a horse cart and my body is being drug through the dirt behind it. One of the main side effects of all seizure meds is sleepiness/tiredness but some also prevent you from being able to sleep at night. How cruel is that? Have you ever been so tired that a gravel path looks inviting to lay down and take a nap on? I have. I have gotten to the point where I could lay my hurting head down anywhere and fall asleep. I fell asleep sitting up talking to my housemate just the other day. It’s bad.

And this game isn’t over yet. I actually just changed my medicine dose last week and I go back to Cleveland Clinic at the end of this month so we’ll see what happens then.

In my next post, I want to share with you something really awesome that God did with all of this mess and how he answered a prayer of mine.

 

 

(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.)

 

The Best Worst Appointment

Sometimes I wish my doctors knew how much they were prayed for. How often we begged God to give them wisdom and knowledge on what to do. Maybe I should have started each appointment like that. “Hey, I just wanted to let you know that we prayed for you a whole lot before we came here today.” I wonder how that would have affected the appointments?

Boy, did we pray before I went to Cleveland. Knowing that if they didn’t have any solutions, then I was pretty much stuck, caused everyone around me to pray for that appointment.

From the very beginning, Cleveland Clinic was awesome to work with. Their staff were friendly, actually returned phone calls, and made the entire process very smooth. Once there, the epileptologist spent over an hour talking with us (Natalie went too.) Every other time I had seen a specialist, they were usually in the room for ten minutes or less but this doctor took a lot of time to get to know the situation and to explain things to me.

She told me that what I have is Juvenile Myoclonic Epilepsy. FINALLY. An actual diagnosis. She pulled out her pad of paper and listed the different medications they use to control this condition and showed me what options I had left. She explained things really well and also told me some warnings that no other doctor had yet to tell me.

I asked her why it just suddenly appeared and she explained that if your brain is already pre-disposed to having seizures and you put a lot of stress on it, then this condition can come to the surface. My face lit up, “So if I take away that stress…” And that’s when the crushing blow came. She started to shake her head, “No, your brain will not go back.”

I didn’t look over at Natalie and I knew she would be avoiding eye contact with me as well. My only thought was, So I’ve ruined my brain forever. It’s never going to go back to the way it was. And guilt started creeping in. Everyone had told me I was pushing myself too hard and I refused to listen. I knew it was my fault and I knew there would be those people all too ready to say, “I told you so.” (And there were.) And yet how was I supposed to know my brain was “pre-disposed” to having seizures?

I thought I was fine until I got home that night and ended up just laying in bed sobbing. In one sense, it was wonderful to actually have someone who knew what was going on. But I guess I had always had this hope that there would be some magic wand to wave and everything would be fixed and to find out that there was nothing they could do but use medications (with terrible side effects that my body hates) to control it was beyond disappointing. I had this sense of, “Okay, if this is how my life is going to be then I need to figure out how to live like this.”

But that is so much easier said than done.

 

 

(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.)

 

Offering Sacrifices

So where do I go from here, right? I had just spent three days in the hospital without any real results. I had a follow-up appointment scheduled with the neurologist and I told him that the medicine wasn’t working. I was still having seizures. I asked what my options were and sat there in silence as he basically blamed me for the medications not working. He made it sound either like it was my fault or like he didn’t believe me that they didn’t work. Aaaaaannnnnd that was the last time I saw him.

I’m sure it is hard to be a doctor. So much of it is trial and error and it would kill me to watch people suffer who were under my care. I think that must be why so many doctors and nurses have developed the hard, uncaring outer shell. I certainly met some very kind people in the medical world, but they were definitely the exception, not the rule. In fact, they were so few and far between that I could easily tell you each one.

So there I was: answer-less and now doctor-less. Fortunately, I wasn’t Jesus-less! A few days after that appointment, I wrote in my journal:

“Today is the 6 month mark from the first seizure (it was Oct. 10th). Who would have thought it would last this long? Who would have known what God was about to bring me through, to teach me? Which reminds me of a verse I read today in Psalm 50, ‘The one who offers thanksgiving as his sacrifice glorifies me…’ I so want to be that thankful person! I don’t want to take things for granted. Thank you, Lord, even for the rough times.”

What do you need to be thankful for today? What have you been taking for granted that you can simply pause and thank the Lord for? What is something you have never even thought about thanking God for?

A few days after that appointment, Natalie walked into the office and announced to me that she had gotten an appointment for me at the Cleveland Clinic. And it was less than three weeks away (which is really fast in the medical world for an appointment.) I was so thankful! Thankful for Natalie who worked tirelessly to get that appointment, for the Lord working everything out to get it so quickly, and for the opportunity to visit some of the best doctors in the nation.

 

(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.)

 

Sleepless in…Dayton (Part 3)

During my second day of testing, one the nurses asked me if Doctor so-and-so (the Epileptologist) had been in to see me yet. I told her that I wasn’t sure because so many people had been in and out. She replied, “Oh, you’ll know her. She’ll have an entourage of medical students following her around.” The nurse was right. The next morning a doctor walked in and I knew exactly who she must be because there were 6 students right at her heels.

She told me that I could go home that day. She explained what they had seen. Apparently, my brain has these abnormal high waves all the time and they aren’t sure why. They have the potential to turn into seizures but they aren’t actual seizures. They only saw a few actual seizures while I was there even though I felt like I was going crazy the whole time. Her solution: put me back on the meds until we find the right one.

I felt a little stunned. I had gone through all of this only to be right back at the same place. Still no answers really. Just more medication to control symptoms, not fix the cause.

But God was teaching me something in that hospital bed. The first night, when the nurse woke me up to check my blood pressure, I got up to use the restroom. Which is really difficult, by the way, when you have 26 wires coming off of your head and 5 off your chest. As I went to wash my hands, I fell. With no warning, a seizure came and BAM! I was suddenly sitting hard on the floor. I was so surprised that it took me a minute to get back up. You see, every seizure I had had before that one, came with a warning sign. That was the very first one that came with no warning whatsoever.

Because I always had warning, all the nurses had let me use the restroom by myself even though technically they weren’t supposed to, but now that was over. A nurse had to be with me every time. Talk about humbling.

The worst part was, as I crawled back into bed exhausted that night, I realized I had lost my last bit of control. Having that warning gave me the assurance that I could always be sitting or leave the room but that was gone now. Suddenly the world felt a little more unsafe than it had a few hours before.

As I laid in my own bed on my first night at home, my heart was in a lot of turmoil and I couldn’t fall asleep. I was talking to God about how I had wanted that control and warning and how I was afraid now that it was gone. I realized I was going to have to up my trust game. I was going to have to pray for God to give me trust in him more than ever before. Have you ever had God answer a prayer immediately? In that moment, as I prayed for God to calm my heart and give me trust in him, I felt a wave of peace come over me such as I have never felt before. I thanked him and fell asleep right away.

So no, I still had no answers. No magical potion to make everything go back to the way it was. But I do have a God with answers and as hard as it is sometimes to actually do, I knew I could trust him and rest in him.

 

(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.)

 

Sleepless in…Dayton (Part 2)

Have you ever been really thirsty and gone to take a drink out of a water bottle only to discover that it’s really flavored water and not regular water? And it wasn’t at all what you expected?

That’s how I felt with this monitoring. I had it so set in my mind that all I was going to do was lay there and sleep and relax, maybe watch some movies, or read a book and it turned out to be something completely different.

Sleep deprivation is terrible. Let me just say that. After the second round of 21 hours awake and four hours of sleep, I was talking nonsense and I knew it. I have never been so tired. The one night they woke me up in the middle of my four hours of sleep to do a routine blood pressure check! Also, they try to induce seizures while you are under the monitor. So they bring in the strobe lights, played all sorts of different sounds, and they try to stress your heart and your brain in order to cause seizures.

Now, would you like to know the good parts?

-Friends can visit! This hospital does the monitoring in the ICU so technically you are only allowed to have 2 visitors at a time but I know at one point we had 6 people in the room. So many wonderful people came to visit me over the few days! My mom spent the days with me and Natalie spent the nights since she was working and that was the only time she could visit. Natalie had the worse end of the deal- she ended up being the one keeping me awake until 2am.

-Thank Jesus for the Olympics!!! You know, I NEVER get to watch the Olympics because I don’t have cable but because I was sitting in the hospital, I got to watch more than I ever have before!

-You get to wear pajama pants the whole time! I didn’t have to wear a hospital gown as long as I followed their standards for what you needed to wear (which, fortunately, I had read ahead of time) so I got to wear my own clothes.

-You can play with the monitor. Ok, probably shouldn’t have been doing this, but it didn’t take me long to find out that if I clenched my teeth together the EEG monitor would go crazy. I never got in trouble for it….

-I had one really awesome nurse! Actually, she was the night tech and she was amazing. That girl needs a raise. The first night she came in and found how tight my head was wrapped (it was cutting off the circulation to my ears) and she re-wrapped the whole thing. She explained things to me which no one else had taken the time to do and I am so thankful for her!

 

(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.)

 

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.)

 

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.)

 

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.)