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Unworthy

One of my favorite ice-breaker questions is, “What is your very first memory? The first thing you can remember from your childhood?” This is a great conversation starter and you really can learn a lot about a person when you ask it. My very first memory is actually being potty-trained. You probably don’t believe me, but it’s true. I remember because when I would go to the bathroom, I would get sprinkles as a reward and I remember licking them off my hand and the colors would stay on my hand. And I didn’t like the round sprinkles as much because they would get stuck in the cracks of my fingers. Isn’t it crazy how vivid that is?? And it’s not from hearing people tell me the story because when I told my family this last Christmas, none of them remembered.

Seriously, think about it: what is your first memory? You might be surprised what you remember. And ask others- it’s always fun to see what friends remember.

So what’s with the sudden interest in memory? I had a virtual appointment with my doctor from Cleveland last week and I explained to her the memory issues I was having. She confirmed that it is a really common complaint with those that have epilepsy and it could just be from the epilepsy itself but it’s also a side effect of my meds. Because I’m finally seizure free, we aren’t willing to change up any medication so I’m kind of stuck there. I asked if anything could be done because I’m losing some long term memories but mostly having trouble with everything short term. Her answer was to keep notes and lists. -_-

One of the things I’ve really noticed me starting to forget that’s bugged me the most is Bible stories. I mean, seriously, these are stories I’ve heard and read since I was born and I can’t remember them! So I decided I needed to do an overview of the Bible. Some friends and I are currently reading through the Bible in 90 days. It’s a lot of reading a day but it’s totally worth it. We’re doing it through the Bible app and we can post a note each day on something God has taught us and that way we are learning from each other too. It’s really been a blessing so far.

Something that struck me was a verse in Genesis. Jacob was about to meet Esau and he was afraid of what Esau might do to him so he’s praying to the Lord. And part of his prayer says:

“And Jacob said, ‘O God of my father Abraham and God of my father Isaac, O LORD who said to me, “Return to your country and to your kindred, that I may do you good,’ I am not worthy of the least of all the deeds of steadfast love and all the faithfulness that you have shown to your servant, for with only my staff I crossed this Jordan, and now I have become two camps.'” Gen. 32:9-10

So on days when I get frustrated because I can’t remember things, or I feel exhausted from the meds, I WROTE THIS VERSE DOWN so I can remember it. Because I am not worthy of ANY of God’s love and faithfulness that he has shown me either. And I don’t want to forget that.

 
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Posted by on August 22, 2018 in epilepsy

 

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Thoughts from 1am

I used to shake my head and laugh at those bloggers who stayed up till all hours of the night writing out their posts because I knew that would never be me. And yet here I am at 1am in the morning, typing out a post because I’ve tried everything else to fall asleep and it’s not working.

I have a very good night time routine. I don’t eat anything in the late evening, stay off electronics right before bed, and I’m usually in bed between 10-10:30pm. I brush my teeth, take my meds, read my devos, and lay down. Usually my meds knock me out within 10 minutes and it’s all good. But tonight it’s not working. I laid down and a very intense feeling of rage came over me. Why? Good question. I’ve been trying to figure that out for two and a half hours. And why it has happened the last two nights also. A feeling of frustration and anger for no reason that makes me restless and unable to fall asleep. Then I remembered.

When I first started taking these meds, my emotions got really out of whack. Like, seriously bad. Picture the stereotypical teenager in puberty and that’s pretty much what I was like. One minute I would be nice and cheerful and the next ready to scream at the top of my lungs with no cause for the change. It was SO frustrating to suddenly feel out of control of my emotions but still be responsible for them! A friend of mine suggested that I start taking a natural supplement, St. John’s Wort. I’m kind of wary of natural remedies (apologies to every lady at my church!) because I haven’t had any success with them and get tired of hearing how they will solve all your problems. But this lady is an ER nurse (plus my doctor agreed that it was a good idea) so I begrudgingly decided to try it for a few weeks and my emotions leveled out to a manageable degree. I haven’t stopped taking it in probably a year or so.

Until Wednesday when I ran out and forgot to get more! Guess when the issues started. Yeah…

You know, sometimes I hate taking meds and that supplement because I don’t like feeling dependent on them. But this week has reminded me that the side effects of my medications are real and I can’t ignore them. We live in a fallen world where things: hearts, bodies, brains, etc are broken and need help. It’s okay to use what God has given us to help them. It’s good to take the meds and be grateful for them.

Okay, that’s all. Now maybe since I got that off my mind, I can get some sleep! Goodnight all!

 
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Posted by on June 23, 2018 in epilepsy

 

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Defying the Doctor

As a kid, my stomach was upset a lot. Just ask my siblings. Pretty much any time I got excited or any big event/holiday came along, my stomach would churn to the point that I would throw up. If the stomach bug was going around, it was a guarantee that I was going to get it. Car rides- ugh. I was pretty well known as the kid with the sensitive stomach. And I despised it. I HATE throwing up or being nauseous. So it became my saying that I can handle anything except stomach issues.

A few weeks ago, my doctor and I both agreed to start THE med. This was the one we had been holding out on because of the side effects, even though it’s supposed to be one of the best ones out there. The two major side effects? Weight gain and hair growth. My doctor said weight gain wouldn’t be an issue for me but she dodged the hair question every time I asked it. So when the prescription was finally made, I decided to do some research for myself. Do you know what I found? I had heard things wrong and the side effect wasn’t hair growth but hair loss. As I was online reading story after story about the side effects, panic started to set in. How could I have made such an error?? I knew, of course, that in light of things, it was silly to be upset about losing my hair but I was upset. And I knew it was pride.

So, with a lot of praying about my attitude, I started the med and the first week I noticed a drop in all seizures and mild hair loss but other than that I was just super tired (that’s always a side effect.) THEN the second week came. Extreme nausea and stomach pain that never went away. Dizziness and weakness to the point that it worn out the muscle in my arm to brush my teeth. Something wasn’t right but I was confused because I had already been on the med for a week without all this stuff. So I played some phone tag with my doctor, got prescribed an anti-nausea med that didn’t help, and got some blood work done to check the levels of the med. And I waited.

For two weeks. The blood tests took five days to get and it ended up going over a weekend. As I laid on the couch that Friday, knowing I wasn’t going to get any results until Monday, I. Was. DONE. I had started to throw up and if you recall, I’m not particularly fond of that. There was no way I could make myself take that pill that night. So I broke every rule in the book and I didn’t. (I was still on two other medications so it wasn’t like I was going cold turkey or anything.) And I didn’t take it the next morning or night or Sunday and I felt SO much better! I prepared myself for a bad scolding from the nurse when she called on Monday with the results but it was more mild than I anticipated.

As I expected, the seizures came back but I would take them any day over the stomach stuff. So now what? New med combination, of course. That’s how it always goes. I’ve actually been on this one before and it was my idea to try it again with a different combination. We will see. Maybe this will be the one.

Yes, it gets wearisome. I have no idea how people go through this without Jesus. I’m so thankful I don’t have to.

 
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Posted by on November 8, 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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