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A Year of Tears and Thanksgiving

Today is the one year mark. Hm. The implications in that simple statement flood my mind with a myriad of thoughts and feelings. One year ago today I woke up and had the first seizure of many. I remember the confusion and exhaustion my body felt that day. When I got home late from work that night and laid on the couch crying in my confusion, little did I know how many tears I would shed over the next year.

I used to never cry. At least, very rarely. It was so rare that it was like a marker for that day. “Oh I remember that day! Yeah, because I cried.” Ridiculous, right? I know some people that cry at the drop of a hat. You know who you are. ūüôā But that wasn’t me; I just didn’t cry much.

I could probably count on both hands the number of days in the last year that I haven’t cried. Now you are probably thinking “Wow, what a crybaby.” I know, right? It’s been a rough year physically, emotionally, and spiritually. And I have struggled. And I have cried until I couldn’t anymore- literally, my body started to pass out if I cried.

I have cried tears of pain, confusion, exhaustion, sadness, frustration, and loss.

But I have also cried tears of thanksgiving. I have been thankful for faithful friends to walk with me and comfort me. I have been thankful for wisdom given to doctors and for small kindnesses of nurses. Most of all, I have been thankful for the blessing of being able to read the Word and find encouragement in it:

“You have kept count of my tossings;¬†put my tears in your bottle.¬†Are they not in your book?¬†Then my enemies will turn back¬†in the day when I call.¬†This I know, that God is for me.¬†In God, whose word I praise,¬†in the Lord, whose word I praise,¬†in God I trust; I shall not be afraid.¬†What can man do to me?” Psalm 56:8-9

It is comforting to know that God keeps track of our tears. He knows our struggle and is actually able to relate with it. He knows what it feels like to weep because of loss and sorrow. I love that last part: What can man do to me? I will readily admit that man can do much to us but it reminds me that no matter what happens in this life, Christ has already won! And we are more than conquerors through HIM. What a thing to be thankful for, right?!

So today, one year later, I celebrate that victory. In this moment, do I feel victorious? Nope. I’m having 3-7 seizures a day, my back is killing me from all the muscle tension, and my head is about to explode. But today, I choose to celebrate in this life, the life that is to come because of what Christ has done.

Today, I choose to be thankful.

 
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Posted by on April 10, 2017 in thanksgiving

 

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Chutes and Ladders

Have you ever played Chutes and Ladders? I loved that game growing up! You know why? Because the good kids get rewarded and the bad kids get punished and it just seemed like a fair kind of system. There was however, one thing I did NOT like about the game. If you remember (think back to your childhood…unless you are like me and still play kid’s games…), the goal of the game was to get to the 100 spot. So you finally work your way up to 85 and start to get excited because you are getting close and a roll later you end up on the 87 square. Do you know what is on the 87 square?? A chute. A chute that lands you back down on 24! I remember that happening to me several times in a game and getting frustrated by being so close and then the disappointment came of rolling into that square.

Chutes&Ladders1

I currently feel like I am very close to landing in that 87 square. Let me explain.

I went to Cleveland Clinic on Feb. 24th. Have I mentioned before how amazing they are? I would also like to mention, though, that this time they really tested my memory of 4th grade geography. I was having my EEG done and they usually ask you several questions just to make sure you are thinking correctly. Often the questions are along the lines of: Do you know where you are? What is today’s date? Who is the president? Things like that. Do you know what they asked me this time? Name the Great Lakes. Uhhhh….hang on while I pull that HOMES acronym out of my memory…

My EEG came back clear (Thank you, Jesus!) but I had been having a lot of issues with some of the side effects of one of the medications which is the main thing I wanted to talk with the doctor about. I had also noticed that if I was under stress (which is life), I was still having lots of seizures, so the medications were not fully controlling them either.

Come to find out that the medication causing all the issues is actually considered a “rescue” seizure medicine and she wasn’t planning to keep me on it. (Backstory: they had to quickly take me off a different med because it was causing heart issues so they put me on this one.) So she decreased the dose of that medicine and increased the dose of the other one that I take. I had a blood test done last Monday and after she gets those results she will most likely take me off the problem med and switch me to a different one.

So I’m guessing you probably still don’t see the connection to Chutes and Ladders yet. Am I right? You see, I actually haven’t had any seizures since that appointment. 22 days without a seizure- I think that might be¬†my longest streak since all of this started. But it’s almost certain that whenever you are in the middle of a medication change to have some seizures. So I currently feel like I’m sitting nice and pretty on that 85 square just waiting to roll a two whenever I switch and then the counting¬†starts again.

That being said, do you know how nice it is to go 22 days without any seizures???! It’s pretty awesome and I’m so thankful that God has given me this time! I’ll keep you posted (haha, because this is a post…nevermind… ūüôā ) on what He does next!

 
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Posted by on March 18, 2017 in epilepsy

 

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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.)

 
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Posted by on February 8, 2017 in The2016Story

 

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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.)

 
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Posted by on February 5, 2017 in The2016Story

 

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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.)

 
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Posted by on February 3, 2017 in The2016Story

 

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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.)

 
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Posted by on January 30, 2017 in The2016Story

 

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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.)

 
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Posted by on January 27, 2017 in The2016Story

 

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