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To Coffee or Not to Coffee?

Growing up our family never drank coffee. My Dad hated the taste of it and my Mom didn’t like any sort of hot drink so I never even tasted coffee until I was an adult. Although we did have a coffee maker we would dust off for guests occasionally and pull our can of years-old coffee out of the freezer to make for them. I actually felt hugely bewildered and almost betrayed the last time I went home and watched as my Dad got coffee at church and found out my Mom drinks it every day. I was in shock. Apparently it’s a thing for them now.

Which I’m okay with because I love coffee. When I moved away from home, my world opened up to the wonderful smell of it in the morning and I grew to enjoy it. It wasn’t the caffeine (a little bit of caffeine makes me pretty shaky), I just loved the taste and the boldness in the morning. I didn’t drink it every day (also a HUGE tea fan…) but a lot of days.

You are probably wondering if I actually have a point with these ramblings or not. Guess you’ll have to wait and find out, huh? Fast forward to 2016. When I started having seizures, I was told that caffeine is a big trigger for most people. I did a little testing with myself and found that to be true. I figured that would be the case since I was already sensitive to caffeine. So I veerrryy sadly cut coffee (uh, because every sane person knows decaf is gross) and my favorite black teas out of my diet to prevent seizures.

Fast forward again (boy, we are just flying through time today, aren’t we?) to about 3 months ago. I was REALLY struggling. A major side effect of my meds is depression. They actually monitor you for it and ask you about it at every appointment. People, it’s a really hard place to be in. To force yourself to take medication that is (finally!) working for one thing but really hurting you emotionally. The meds were also making me SO tired and foggy that I was struggling to do anything. Every day was a battle. As weird as this sounds though, my relationship with the Lord was close. I was learning and growing in Him but struggling at the same time. It’s hard to explain.

And one day, I had had enough. I wanted some coffee and by golly I was going to have some. I did use a small amount of wisdom and got half-caff. It didn’t taste good at all but within a few minutes I could feel my brain becoming clear. The fog was dissipating some. And while I felt a little what I call “seizury” (I think I made that word up), nothing happened and my day ran better.

I have drank half-caff coffee pretty much every day since then. One cup. Actually using the amount they recommend. (Which is new for me. I was always dark roast all the way.) I have a little more energy, and my thoughts are better and more focused. I don’t live in that darkness that was hanging over me before. As best I can put it, the coffee is fighting the depression in some way. I absolutely DO NOT want to be put on medication for it because I know of side effects from those. (Can I mention here that I’m not recommending coffee as medication and if you and your doctor decide anti-depressants are needed, I’m not saying it’s wrong at all! I just don’t want to go that way.)

And the reason I’m telling you all this is because people keep mentioning that I look better and seem like I have more energy. Sometimes I’m at a loss of how to respond to that because for me, it feels fake. I know it’s simply the coffee. And if I were to take that away, things would go right back to how they were before. Back to foggy Kimmy, unable to accomplish or understand what she needs to do for the day. Is that who I am or is Coffee-Kimmy who I am? (Oh thank goodness, I’m just redeemed-Kimmy!)

So I contemplate and pray about this often. Does that seem ridiculous? Praying about coffee? Maybe it is and maybe I’m overthinking it. Anyway, in the interest of being transparent, I wanted to share and get your thoughts on the topic.

 
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Posted by on November 4, 2018 in epilepsy

 

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Two Cars, A Job, and a Great God

In case you didn’t know, on June 9th, I was officially 6 months seizure free! You’re probably thinking, “Hooray! So what?” Yeah, I know. But actually, it was a really big deal because you have to be seizure-free for a six month period before your driving privileges are graciously placed back in your hands. So yes, I WAS counting those days. Somehow, I thought it would be a pretty simple process but my doctor had to send forms to the BMV and they had to send forms to ME and I had to visit my local BMV so it took longer than I thought it would. Basically you have some of the slowest organizations communicating with each other over one person. No driving on 6/9 which was a bummer but that’s ok. All the paperwork eventually got in order, my new license came, and I’m now good to go.

The problem was, back in 2016, when I knew I wasn’t going to be able to drive for a while, I had sold my car. Car shopping is LITERALLY one of my least favorite things to do. Some people really like it. Not me. But that was next on the list. I looked and looked but I couldn’t find anything in my budget that actually still ran. Fortunately my work is a 3 minute walk away so it wasn’t an immediate need but still a need.

Enter Car #1: Edna. Some really good friends of mine had an extra car lying around their house. To be honest, they were planning a project with the engine because the car had some issues but they said that if I wanted it while I looked for something else, it was mine. No charge. They are really generous and I felt SO blessed. I’m not kidding. While everyone else saw the rust, smelled the mice, and heard the engine, I felt the freedom of having a car that was my own. Not having to coordinate rides to go to the store or see a friend. Being able to surprise my best friend by showing up at her house for the night. I knew it wasn’t a long term solution because there’s no way I would drive this car farther than 20 minutes from my house, but it worked for the short term.

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There was just one problem. Next month I have a rather significant birthday coming up. Not necessarily the number but what happens on that number. I have to come off my parents’ health insurance. Sad day. It’s been wonderful. I doubt they’ll miss me as much as I’ll miss them. 🙂 And although I work full time now, they don’t offer insurance so I have been job hunting for a little while. A couple weeks ago, I was offered a position at a small bank. The hours are great (like, I don’t have to work till 9pm anymore!), they have full benefits, and the atmosphere is friendly and inviting. It felt like a good fit but it’s around 30 minutes from my house and I honestly wasn’t sure my car would last long doing that every day.

Enter Car #2: Peri. I was pretty sure I was going to accept the job offer and see how long my car would make it before I had to get another one. Last Saturday though, I was thumbing through FaceBook and a car popped up on my feed. I wasn’t even on Marketplace or anything. It was just there. It caught my eye because it was a Honda but listed for several thousand less than Hondas run for around here. And I saw it two minutes after it was posted so I knew if I messaged the lady, I would have a good chance of being the first person. I contacted her and set up a time later that day to come look at it without really knowing why. I literally prayed on my way there, “Lord, I really can’t afford this car so I don’t see a point in test driving it. Why am I even going here?” But I went and not only was it super nice with regular maintenance and low mileage, it had several “extras” on it. Like a dark tint on the windows, black tire rims (which, apparently, is a cool thing?), new headlights ready to be put in, and a sound system complete with a subwoofer that takes up most of the trunk space. Actually, funny story on that. When I was looking at it, the owner excited told me to try the radio. I turned it on and up to about 7 and told her it sounded great. She looked kind of disappointed and said, “Oh. Well. I think it goes to about 50 or 75.” I asked her if I could pray about it and give her an answer the next day and she said she wouldn’t let anyone else look at it if I let her know by noon the following day. Which was super kind of her. (Oh, did I mention the owner was a believer???) The following day I told her I would take it but I asked if she would want to take the sound system out (because I certainly won’t use it) and would she be willing to take the cost of it off the car? Otherwise, I said she could leave it in and I will just take it out myself and sell it. She said she really didn’t know how to take it out but she would DROP THE PRICE OF THE CAR BY $200 and I could keep the sound system. I probably read that message 4-5 times before I responded because I wasn’t sure I had read it right. Uh, yeah, I’ll take the car.

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I told a friend of mine that I almost feel a little embarrassed by my car now because it has all these things on it that I would NEVER put on any car I owned simply because I wouldn’t spend the money on it. And she told me that it should just be a reminder of how great God has blessed me.

And she’s SO right. As I was driving home after signing off on Peri’s title I actually started crying, just amazed at how God works. How he not only provided one car that got me about for a short while, but yet another one that I can trust for long distances and my new job. How he provided the finances I needed. How he went above and beyond anything I would have even dreamed of asking for in a vehicle. I am amazed.

But I didn’t begin praising God when he started giving me things I wanted or needed. That’s not the reason he gets praise. He deserves it simply for being God. Everything else is simply another reason to thank him!

 
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Posted by on September 22, 2018 in blessing

 

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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. 🙂

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.” I 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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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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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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When Dreams Fall

I always thought that dreams had to be something big. Like a dream job, how you want to change the world, or the perfect marriage. But I’ve recently learned that dreams can come in all shapes and sizes. It doesn’t always have to be something life-altering. Sometimes, a dream can be something that is small but important to you. Actually, I think that is really the key: importance.

How did I come to this conclusion? Hmmm…when I first tried to understand the idea of not working for a while and needing to rest, I hated the thought. Mostly, because I am not very good at resting. I like to be doing stuff and I like to be working so the idea of giving that up frustrated me. But suddenly a wonderful thought popped into my head and slowly a dream started to form. I started to envision all this time that I would have to study God’s Word and do my devotions. I thought about quiet time without time restraints and unlimited hours to read great books and really get closer with the Lord. And I got a little excited. I ordered a few new books and stared at them, waiting for the time to come where I would finally have time to read them.

And the time has come. Do you know what? I can’t read. This has happened before, right when I first started having seizures, but I find myself really unable to read for any length of time. My eyes jump from line to line and the amount of focus it takes to read is so incredible that my head starts to pound and I get worn out very quickly. Everyone tells me to get audio books but I am the worst auditory learner IN. THE. WORLD. It’s like background noise and I just tone it out. (I’m sure some of you are thinking I’m crazy but maybe you don’t like reading at all so picture something else. 🙂 )

In my disappointment, my heart and mind cry out “Lord! How can this be good?! How can it be good for me to not be able to read your Word? I don’t understand!”

And you know what? I will honestly say that I don’t know the answer to that question. But I know that I don’t need to know all the answers and I can also honestly say with Job, “The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” I read this simple quote the other day and I feel like I should write it down and put it up all over my apartment so I don’t forget it! It said, “And if not, He is still good” Just let that sink in. You can put whatever thoughts you want in there and it won’t matter:

He. is. still. good.

What a beautiful thing to rest in.

 
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Posted by on September 19, 2017 in contentment

 

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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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