Tag Archives: epilepsy

The Art of Being an Old Lady

I love old people. I mean, I pretty much have to, considering the age my Dad is getting to be. Ha! I can’t wait till he reads this!

But seriously, old people are the cutest. Plus, they have a huge advantage over most of the population. Let me explain. Have you ever noticed that old people can pretty much say whatever they want (which is sometimes what everyone is thinking but doesn’t think it’s socially acceptable to say) and they get away with it?? For example, an old person that you may never have met can (and will) outright ask your relationship status in front of a group of people AND proceed to give you all sorts of advice OR set you up with a family member of theirs. Your initial thought will probably be that it’s not really any of their business but then something will click in the back of your head and whether consciously or not, your brain will tell you, “Oh don’t worry about it; it’s an old person and they can say whatever they want.”

What??! Why? And how do I get that status?? I can’t wait to be old. I’m sneakily storing up all sorts of embarrassing things to say and do- does anyone know the official “old” age?? I want to be extra prepared when I reach it.

I’ve been thinking about old people recently because I’ve been feeling old (but without the perks because I don’t think I’ve reached that magical age yet.) I’ve been tired a lot but that’s not what makes me feel old. I really feel like I’m losing my memory and it’s actually pretty sad for me. If you ask anyone, I used to have the best memory in the world. At my old job, I remembered everything. From long and strange passwords, to people’s names and faces, to things that I never should have known but somehow it got stuck in my head. People were always asking me if I knew such and such or if I knew where something of theirs was, even though there was no way I should know. And most times, I did.

But not now. A few weeks ago at work, I was learning how to make all the food for the hot lunch we offer. I had about 9 pans in the oven at once so it was a lot of multi-tasking. At one point, the lady teaching me had a pan of meat and I watched as she put a little bit of water in the bottom and then she was showing me how to put the sauce on the meat. By the time she had finished, I looked in the pan and said, “Now did you put water in there or is that just grease from the meat?” She looked at me kind of funny and that’s when I realized I had literally watched her put that water in less than 2 minutes before.

I’ve found that now I have to keep track of things a lot more whereas before I could just rely on my memory for everything. For instance, I rarely used to put things on my calendar because I just always remembered my schedule. NOPE. Doesn’t work that way now. EVERYTHING must go in my phone because I can’t trust my memory. I used to know the birthdays of my family members AND all the kids I babysat and now I have to sit and calculate my Mom and Dad’s ages (good thing I still remember what years they were born!) I used to keep my shopping list in my memory- bahahahahaha! That seems like a joke. I could be getting 2 things from the store and I would still need to put them in my phone to remember them.

Do you know how frustrating and sad this is?? I guess I didn’t really think that the memory loss part of epilepsy would happen to me. What I mean to say is, I pretty much FORGOT about it! I have so much more respect and patience for old people now! You need to ask me the same question 3 times because you can’t remember? You go right ahead! At the same time, once again, people expect that from an old person and they give a little bit of extra grace. But they don’t expect it from me. I started to notice how bad it was when my best friend would call me at night and ask how my day was, and I really couldn’t remember what I had done. So I would give a general answer and when she wanted specifics, I would have to really really think. It’s like my brain used to be a nice filing system and someone has gone in and dumped out all the folders and now I have to sift through them to find what I’m looking for.

So if you ask me how my week has been and I look confused and like I’m searching for an answer, I probably am. I’m trying to remember, literally, what happened this week.

Please give some patience while I try to figure it out.

And maybe a hint or two would be nice.


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Posted by on February 19, 2018 in epilepsy


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Dealing with Chronic Headaches

One of my co-workers walked by me and said, “Ugh, I have this headache today and it just won’t go away.” As he turned away to grab something, I literally had to clamp my mouth shut because the words, “Uhhh… I don’t want to hear it.” almost came out. After I redirected my thoughts and attitude, I said, “Aw man, I’m sorry. That really stinks, doesn’t it?”

What he doesn’t know is that I have had constant daily headaches for almost 2 years now. What does that mean? It means every single day I wake up with my head hurting and I go to bed with it hurting. The pain varies in intensity but it’s always there. There are things I know that make it worse such as: caffeine, sugar, lots of stress, exercise, social gatherings, loud noises, and the list goes on…and a few things that help such as: sleep, massages, and dark places. They aren’t migraines (I’ve had a few of those and boy are they terrible!) but more of a constant pressure with sharp pains here and there. I sometimes say that it would feel so much better if I could just poke a hole in my head to let out all the extra air that must be up there. So that being said, sometimes I can really relate to others with headaches and sometimes I have to remind myself to be compassionate.

Over the last couple months, since my seizures have stopped, I’ve been kind of holding out, hoping the headaches would dissolve too. But slowly, the thought has been growing on me that they might not go away. I hadn’t really considered that before, but veeerrrry slowly, God gave me grace to accept the idea that that may be the case. I started thinking of how I was supposed to adapt my life to these headaches, instead of sitting around waiting for them to leave. I’m not really a newbie to chronic pain (I’ve had back issues since I was about 11) but headaches somehow affect more of your life than other pain. They are exhausting in addition to the pain.

However, my neurologist and best friend have wanted me to see one of the headache specialists at Cleveland Clinic for a long time now so I finally agreed and went last week. Looking back it has occurred to me that as I prayed about the appointment, I never really prayed for him to have answers. I really just prayed that he would be a kind and compassionate person and that prayer was certainly answered. He sat and listened to me for over an hour and asked a lot of questions. He acknowledged how painful and frustrating these sort of headaches can be. He also admitted that they are very difficult to diagnose and are usually very resistant to treatment. I wasn’t a huge fan of being put on a medicine that he wasn’t sure would work and the side effects were tiredness and dizziness (I deal with enough of those!) so he gave me some natural supplements to try instead. I didn’t really feel disappointed or excited after the appointment because I hadn’t had any expectations for it anyway.

But now that it’s been confirmed that the headaches probably aren’t going away (short of a miracle from the Lord), I realize how many of my favorite activities are affected and how I didn’t really think this was going to be a long-term deal. I found myself stuck in a “What-if” rut the other day. Have you ever been there? I thought I was already surrendered to the idea of chronic pain but things like this started to run through my head: But what if I never run again without my head feeling like it’s going to explode? What if I can’t ever make it through a whole evening with my friends like I used to? What if I can’t sit and read for hours on end like I want to? What if helping out in nursery at church will always hurt my head this much?

Ha! And here I thought I was completely at peace with the whole idea! Again and again I countered those thoughts with the same verse: Three times I pleaded with the Lord about this, that it should leave me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
2 Cor. 12:8-9

To be honest, some days I don’t understand how God’s power is made perfect in my weakness, how everything is working out for my good, how I can count it all joy, or how light momentary affliction leads to an eternal weight of glory. BUT I do know that these are the promises I fully believe and cling to. It is SO helpful for me to remember that Paul also was afflicted with something and asked God to take it away and the answer was no!

And like Paul I need to learn that his grace is completely sufficient.



Posted by on February 15, 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.


Posted by on November 8, 2017 in epilepsy


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“Life’s Not Fair”

As I pulled back the covers and crawled into bed, the nearby ambulance was dispatched and the siren went by my window. It pushed my exhausted body and heart just over its limit and I started to cry. Suddenly, life didn’t feel fair to me.

I often heard that phrase growing up and I fully believe it and I think this may be this first time in the last 18 months that I have felt “injustice” in my life because of everything going on. I’ve had plenty of others tell me “it’s not right” and “you’re so young, you shouldn’t have to deal with this” but I just shrugged it off, thinking of how it could be worse.

But I always said I could deal with anything as long as it wasn’t stomach issues. And for the last 11 days, I have had constant, debilitating nausea. You can add dizziness, weakness, fatigue, and headaches to that mix too. I have practically laid on my bed or couch all day, and sometimes I’ve been unable to sleep at night because of the nausea. I’ve missed two important church events that I was really looking forward to. And for what? Side-effects of the new medication I’m on. (You may be thinking that my neurologist is a monster but I also haven’t had a seizure in 7 days so we are trying to work things out.)

I don’t often feel like my life is unfair. But that day was my birthday. I was miserable and try as I might to think about all the people who came around me and showed love and blessed me, I just needed to cry for two minutes and then I fell right asleep.

And I think that’s okay. I woke up the next morning, still feeling miserable, but able to thank God for all his blessings and appreciate my friends and family more. Life is certainly not fair, and I’m so thankful because I don’t deserve what I have.


Posted by on October 24, 2017 in blessing


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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.


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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