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Category Archives: epilepsy

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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Theology for Dummies

Have you ever read any of the “For Dummies” books? You know which ones I mean?

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They are pretty iconic. I mean, most people would recognize them simply by the cover, even if you’ve never read one of the books. They have somewhere around 2,500 titles and over 2 million books in print. Crazy, right? The appeal is that they are easy to read for the average person and present the information in a design where the important stuff is made known so that you can recognize and remember it. I think I read one in high school but I don’t remember what it was.

But to be honest, I kind of stayed away from them because I didn’t like reading stuff written for “Dummies!” (Yeah, pride. I know.) I considered myself a pretty well-read person, for which you can thank my parents. My Dad used to read to us all the time as little kids and he can still recite the “Three Billy Goats Gruff” from memory. In fact, if I were to go home and my Dad was read a book to my younger siblings, I would be in the front row.

When we got older, my Mom read us books like King Arthur, Pilgrim’s Progress, and Canterbury Tales. We read a lot. I love books and reading. I used to get in trouble for reading too much (actually, I used to get in trouble for getting upset when people interrupted my reading…) Old English? No problem. Beowulf? Bring it on. Deep theology? My favorite.

But things are different now. My brain capacity and concentration capacity are different. And although the desire to read deep things is very real, I find myself wishing someone would write a “Theology for Dummies” book. Which sounds like a contradiction, I know. But I simply can’t comprehend the books I used to be able to read- which is SO frustrating! For instance, I’ve had Bonhoeffer’s “The Cost of Discipleship” sitting on my shelf for about a year now. I’ve probably started it 4-5 times and never been able to get past the first chapter because I don’t understand what I’m reading. No matter how many times I read the same sentence, I don’t get it. (Is there a kid’s version of this book??)

I used to be able to read several books at the same time and keep up with all the themes. Don’t believe me? Look what popped up on my Timehop today:

book

This was what I was reading four years ago. I liked reading more than one book at a time so that if I didn’t feel like reading one book, I had another to turn to.

But not now. It’s been frustrating but also very humbling for me. The person who used to pride herself in reading the great books of the world has been brought down to the level of a child and is thankful that she can read at all! That person who used to have 6 books by her bed that she was reading all at once is now thankful to be able to open her Bible and comprehend one single verse in it. Thankful to find those authors that do write simply. Ultimately thankful that salvation isn’t for the wise or all-knowing people but that you just have to have faith like a child. That it’s simple. Just thankful.

 

But…if you happen to find a “Theology for Dummies”, let me know. ­čśë

 
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Posted by on April 18, 2018 in books, epilepsy

 

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It is Well

This morning, at 7:28am, I got a text from my best friend saying that a package was supposed to be delivered to my apartment around 7:30 so I probably wouldn’t want to get in the shower or anything. Sooo what I actually did was jump up, threw my morning hair into a messy bun, and scrambled into some semi-decent clothes, just in time to hear a very signature knock at my door. The knock gave it away because Natalie always knocks the same way and then I knew it was actually her and I needn’t have bothered.

She came because today marks 2 years from that very first seizure. It seems like sooo much longer than that- years longer. Two years ago, my life changed and went in a direction that I never expected. So she brought me an inside joke gift:

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If you read this post, then you know she did this once before when I hit another significant mark throughout this journey. Anyway, it was a great start to my morning! She is the best.

But today I want to talk about how epilepsy has effected yet another area of my life that I took for granted.

I have always loved music. I used to play piano, I took flute lessons for seven years, and it was a pretty rare day that we didn’t listen to some sort of music as kids. As an adult, I used to listen to music while I ran, while I cleaned, cooked, worked, etc. Almost constantly, I guess. It kind of ran my day.

Music is still very important to me but I have trouble listening to it now. My mind has trouble concentrating on things while listening to music and I almost CRAVE absolute silence. It’s really rare now for me to just turn on music as a background noise unless it’s for other people. That being said, I’m about to reference music and songs a lot, because they mean a lot to me. ­čÖé

A song that is pretty popular right now and I actually really like is Even If by MercyMe. It is reminiscent of Job in my mind:

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

There is another line of that song that says, “Give me the strength to be able to sing, It is well with my soul.”┬áI didn’t learn the truth of this phrase until recently. I grew up singing the song It is Well and my current church sings it every so often. But it wasn’t until this past year that I stood up to sing it and my mouth closed as I realized I would be lying if I spoke the words. As I stood there in silence, it occurred to me that it wasn’t well, it wasn’t okay! I was hurting in several different ways and It. Wasn’t. Well.

I knew it should be. You don’t have to tell me what the meaning behind the words is. I know about eternal perspective and focusing on Christ. But sometimes, temporary issues (whether they are physical, emotional, mental, spiritual, or all put together!) cloud our vision of Christ. Some days, it’s REALLY hard to say, It is Well. Which is one reason I love the line from Even If, “Give me the strength…” Yes, Lord! How could we possibly be okay with earthly troubles unless God gives us the strength to lean into him?? Unless he gives us the strength to say (and mean) It is Well??

There have been quite a few songs that have helped me over the last two years. I’m going to reference one more. The chorus goes like this and pretty much sums up my life:

If I ever needed grace, it’s now
You are strong when I am weak, somehow
I am weak enough to see
I need You to cover me
If I ever needed grace, it’s now

 

(Jimmy Needham, If I Ever Needed Grace)

 
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Posted by on April 10, 2018 in epilepsy

 

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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┬áabout this, that it should leave me.┬áBut he said to me, ‘My grace is sufficient for you, for┬ámy power is made perfect in weakness.’┬áTherefore I will boast all the more gladly of my weaknesses, so that┬áthe 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.

 

 
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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.

 
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Posted by on November 8, 2017 in epilepsy

 

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