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Running Towards Gratitude

I’ve been feeling a little bit better recently. I’m finally starting to see results from my “time out” and I’ve gone from having 5-7 seizures every day to last week having roughly 2-3 a day. Which is awesome!

I’ve been taking a lot of walks recently. And gradually, I’ve pushed myself to go farther and farther on these walks. Sometimes it’s been accidental (I wonder where this road comes out?) and other times I am testing my body and brain to find its limit. Probably not what the doctor would order but…

Anyway, with all this walking, I’ve just been itching to go for a run. It’s been sooooo long and the weather has been beautiful and I thought, surely if I can walk 4 miles, I can do a short run, right? So this morning I woke up feeling a little extra ambitious and thought, this is the day, I’m going for it. I had walked a route yesterday that was about 1.7 miles so I planned to run that same route.

I started out nice and easy and within the first 2 minutes I could feel the pressure building in my head but I wasn’t giving up that easy. I pushed and pushed until it got to the point where I was kind of scared that if I kept going, something drastic might have to happen (like a horrible ambulance ride, ugh.) So I came down to a walk and looked at my running app- 1.02 miles.

Instantly I felt this sense of defeat. Defeat, because I didn’t complete the run and walked back, which I hate doing. If you had told me two years ago that soon I would barely be able to run 1 mile, I would have laughed at you.

But in that walk back home, I had time to pray. I realized that it’s a blessing to be able to do all the walking I’ve been doing in the first place. It’s a blessing that I’m not shut up at home all the time, but can be out and about doing things. And what I really should be doing is thanking God for that one mile, instead of discarding it in disgust. I kind of needed an attitude change and to remember all the things I have to be thankful for.

And so today, I am grateful that I could not complete a run so that God could remind me of his goodness and give me time to thank him for it.

 
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Posted by on October 4, 2017 in epilepsy

 

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A Pause in the Music

Around one year ago, I posted this on my Facebook page:

“Often in a piece of music there appears a pause. The pause is put between the notes for effect and to emphasize the beauty and majesty of what is coming next. Sometimes God adds a pause into the constant rhythm of our busyness and gives us time to focus on Him. Just like in a great piece of music, without the pause we would not be able to see the beauty of what is coming and what God has planned to do in us and through us. Let us rejoice when we find ourselves in one of life’s pauses. Let us seek Christ, wait on the Lord, and choose to glorify Him. Let us rest in God’s goodness and faithfulness and allow Him to mold our hearts so that our perspective is changed when the rhythm of the music starts again.”

I wrote that after a conversation with my best friend based on something she had read (giving credit where it’s due here, people).

Today, I find myself about to enter into a pause in life. At the end of August, I will be leaving a job that I having worked at and loved for 4 1/2 years. A job that I have poured myself into with all my heart and energy. A job where my co-workers are my family and I love them as such.  A job where we speak freely about Christ and impact others for the kingdom.

It took a lot for the Lord to bring me to this point. I remember last summer, crying as others around me were pushing me to work less and I felt like I had already given up so many things that I loved. I cried out to God and begged him (or perhaps told him?) to allow me to continue working. That he could have everything else, but not my job. Don’t ever tell God something like that. 🙂

But over the last couple months it has become very clear to both my doctor and finally to myself that this isn’t working. Something has to change. My brain is losing its capacity to handle multiple things at a time and that is basically what I do all day long. And so it’s stressful because I can’t manage things anymore. Which leads to seizures. Which make my head hurt and then I can’t focus. And it’s this never ending cycle that meds aren’t beating. My body has never had time to recover since all this started, which happens to be 15 months ago today.

So what is the plan you ask? The plan is rest. I will be done at my current job at the end of August but still plan to live in the area. I have promised to take at least one month off of all work and see how my body responds and if the meds start to work with a little less stress on my brain. My prayer is that that month becomes one of healing and of drawing closer every day to our Savior.

And so currently I’m in the middle of a full force symphony, but I am with mixed emotions waiting for the day when God brings that pause.

 
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Posted by on July 10, 2017 in epilepsy

 

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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.

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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… 🙂 ) on what He does next!

 
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Posted by on March 18, 2017 in epilepsy

 

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I had a Dream

This may be one of the most personal, open, and honest posts I have ever written and it was hard to write. But I was telling this story to someone last week and it really encouraged them so I thought I would share it here. I should be writing a medical update since I was at Cleveland Clinic on Friday but that will have to wait. 🙂

A while back I was on this medication that caused me to have nightmares. Now before this, I had really not had very many dreams. At all. I rarely ever dreamed, good or bad. But something about this medicine suddenly cause an influx in dreams. They were only bad dreams and they were very, very vivid. The kind that you wake up from in a panic or wake up crying. Sometimes they were so vivid I would wake up and had already jumped halfway out of bed before I realized what was happening. Every night I would climb into bed and pray that I would have no dreams that night.

One night, I had a dream. I dreamed that I was pregnant and gave birth to this tiny little baby. It was so small that I could hold it in my hands only. This is really hard for me to write and some of you are going to think I am crazy, but did you know you can love something in a dream? I don’t know how that’s possible, but I loved that tiny little human in my dream. Shortly after it was born, some soldiers broke into the hospital where I was which was a big room with a bunch of people in it. I was going to spare the details but I think I’m going to tell the complete story. One of the soldiers grabbed the baby from my hands and killed it by stomping on it with his boot. And I woke up crying.

These are the kinds of dreams I mean. I don’t read into dreams or try to interpret them; I just take them as dreams. For days after I would think of that dream and still cry because of the love I felt for that baby. How can you love something in a dream? That’s ridiculous, right? The months went by and the pain of that dream slowly faded until I didn’t think about it anymore. I came off of that medicine, the dreams stopped, and I praised the Lord!

Fast forward to two weeks ago. Suddenly, that dream came to my mind in the middle of the day. And not once, but 4 times that day. And the next day. And the next. And I found myself thinking about it a lot. I prayed and asked God why it was coming to my mind and that he would fill my thoughts with things that were pure and lovely. I would recite Phil. 4:8 every time it came into my head.

One day I was talking with Natalie, just exasperated that I couldn’t figure out why that dream kept coming to mind. She asked if I had been thinking about babies or pregnancy or anything like that. And it suddenly hit me. Like a light bulb moment. I had had one thought a week or so earlier that if I started to date someone, at sometime I was going to have to tell him that I can’t be pregnant.

You see, you can’t be pregnant while on seizure medicine because it almost always causes severe birth defects in the baby. It is still possible to have epilepsy and have babies, you just have to come off your medication and go through a process with your doctor. And while I wasn’t anticipating being pregnant anytime soon, I realized that I hadn’t fully given that desire over to the Lord yet.

It’s odd how God uses stuff in our lives sometimes. How a dream from months before was used to show me an area that I needed to pray about and be at peace with. And the dream has vanished. I haven’t thought about it once since that day. But I am thankful that God used it to bring me to the place where I am now. I don’t plan to be pregnant anytime soon but I am confident in God’s will in that area and will cross that bridge when it arrives and I wasn’t able to say that honestly before.

 
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Posted by on March 5, 2017 in contentment

 

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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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A Random Post from a Jumbled Mind

As you may know, my little brother has epilepsy.  If you didn’t know that, you may want to read THIS post.  Anyway, he hasn’t had a real seizure for over a year due to medication to prevent them.  On Monday, he acted funny all day and through a fast sequence of events, he ended up in the ER again.  It’s pretty sad when a trip to the ER barely ruffles the day anymore- we kind of have a routine.

The girls have still been doing school without mom here.  They do it pretty well on their own with only a little help from me.  There have been so many calls to update people and get news from mom.  Today, all of us girls headed over to the local crisis pregnancy center to volunteer and spent a few hours helping out.  We proceeded to eat lunch at MacDonald’s (because I had coupons) and then picked up a gift for mom because she is kind of worn out.

A couple of ladies from our church will be bringing us dinner tomorrow and Friday. I’m so thankful for them!!!

The doctors are really unsure what to do at this point.  Do they increase his meds or put him on another one?  This was so out of the blue.  David will be coming home later today and we can’t wait to see him.

With mom in the hospital, I was able to get her mother’s day gift ready.  We (finally) bought a wireless router and I was able to hook up the laptop, printer, and Wii.  Shhhhh….it’s still a secret….

 

And through it all here’s what we know…

God is good and he’s in control!

 

 
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Posted by on May 8, 2013 in contentment

 

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