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.

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!

 

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.

 

 

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