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.

 

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.

 

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.

 

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!

 

Offering Sacrifices

So where do I go from here, right? I had just spent three days in the hospital without any real results. I had a follow-up appointment scheduled with the neurologist and I told him that the medicine wasn’t working. I was still having seizures. I asked what my options were and sat there in silence as he basically blamed me for the medications not working. He made it sound either like it was my fault or like he didn’t believe me that they didn’t work. Aaaaaannnnnd that was the last time I saw him.

I’m sure it is hard to be a doctor. So much of it is trial and error and it would kill me to watch people suffer who were under my care. I think that must be why so many doctors and nurses have developed the hard, uncaring outer shell. I certainly met some very kind people in the medical world, but they were definitely the exception, not the rule. In fact, they were so few and far between that I could easily tell you each one.

So there I was: answer-less and now doctor-less. Fortunately, I wasn’t Jesus-less! A few days after that appointment, I wrote in my journal:

“Today is the 6 month mark from the first seizure (it was Oct. 10th). Who would have thought it would last this long? Who would have known what God was about to bring me through, to teach me? Which reminds me of a verse I read today in Psalm 50, ‘The one who offers thanksgiving as his sacrifice glorifies me…’ I so want to be that thankful person! I don’t want to take things for granted. Thank you, Lord, even for the rough times.”

What do you need to be thankful for today? What have you been taking for granted that you can simply pause and thank the Lord for? What is something you have never even thought about thanking God for?

A few days after that appointment, Natalie walked into the office and announced to me that she had gotten an appointment for me at the Cleveland Clinic. And it was less than three weeks away (which is really fast in the medical world for an appointment.) I was so thankful! Thankful for Natalie who worked tirelessly to get that appointment, for the Lord working everything out to get it so quickly, and for the opportunity to visit some of the best doctors in the nation.

 

(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.)

 

Tests and More Tests

So apparently ‘abnormal brain waves’ is a fancy term for “we see something that could lead to seizures but they aren’t actual seizures.” I also found out at that appointment that they had seen my heart (they did an EKG at the same time as an EEG) doing some funny pauses.

Right away, they put me on a seizure medicine and set up some appointments for some more testing to be done. Two days after being on the med, I passed out. Now, I have never passed out before and when it happened again two days later they quickly switched meds. But the passing out didn’t stop.

Hence we enter what I call the Test phase. This is the phase where doctors run all sorts of tests on your body to rule out different things.

-The first test was an MRI. That was one of the most the scary ones because they were checking for a tumor in my brain. My housemate, Natalie, and I affectionately called the tumor a ‘watermelon’ when we prayed against it. I’m thankful that I’m not a claustrophobic person because that would have made things much worse. Nope. No watermelons in my brain.

Then they started running tests on my heart to see if my heart was actually causing the issue. I have to say, the cardiologist was my favorite doctor and I should have taken him a plate of cookies. Finally someone who sat and listened and seemed to care! BUT the heart testing was the worst.

-First came the stress test. Basically, they put you on a treadmill while they monitor your heart to see if anything happens. They stress out your heart. Now, at this point, I was having issues with the passing out and I told the nurse that. She told me that if I started to pass out, she was probably going to try to bring me back using smelling salts and continue the test. Okay, I thought, that’s fine. HAVE YOU EVER USED SMELLING SALTS????! It’s not like in the movies, people, where they wave the bottle under the person’s nose and they gracefully wake back up. Oh no. Smelling salts come in this little tube that they snap open under your nose and they smell like ammonia. For some reason, I had it in my mind that they would smell good, like flowers or chocolate or something, but they smell like ammonia and they make you choke and gasp and your eyes burn and water. UGH. Sometimes I still get the memory of that and choke a little. They used smelling salts on me twice during that test because I passed out twice. After the second time, they stopped the test.

-The second test was an ultrasound on my heart. Which was actually super awesome! I got to see my heart moving and beating. God’s design is incredible and I was able to mention that to the nurse.

-The third test was a tilt table test. For this one, they strap you to a table and lay you flat for 15 minutes or so, monitoring your blood pressure and heart rate. Then they quickly tilt the table up to see if you pass out or not. In my case, that did not cause me to pass out, so they brought out some nitroglycerin and had me put a tablet under my tongue. Do you know what nitro does to you? It increases your heart rate incredibly. Within 15 seconds of that tablet dissolving I had passed out and she laid me back down.

These tests are hard. Although I had friends go with me to the hospital, no one can be in the room with you during the actual test. And it’s hard to be alone and at the mercy of others. I came out of most tests crying, feeling like I had just left a torture chamber, instead of a doctor’s office. I can’t imagine being one of those nurses and having to do that to people all the time.

Do you know what else is hard? It’s hard to be kind to some doctors. There is such a balance between “I know my body best and what’s going on” and “You are a doctor and know way more than I do.” Natalie went with me to all of my appointments and we learned a lot about tact. How to say things with tact. For instance, (yes I have her permission to post this) at one point, a doctor was telling me something and I knew it wasn’t going to work because I had already told him that I tried it and he wasn’t listening to me. Natalie looked him right in the face and said, “No, that’s garbage!” We had to have a discussion later about how it’s not really kind to tell people what they are saying is garbage and we talked about tact.

But if I think about my own life, how often do I say things without thinking them through? How often do I give the harsh answer that stirs up strife instead of the soft answer that turns away wrath?

How about in your life?

 

 

The Waiting Game

I’ve learned a lot about doctor’s appointments in the last nine months. First off, did you know that many doctors (at least all the ones I saw) don’t actually check your height anymore?? They just ask how tall you are and write it down. Funny thing though, they DO still check your weight. Hmm. Like people aren’t honest or something. Secondly, doctors must not trust anybody. They send their nurse in to ask you a bazillion questions and then they come in and repeat the EXACT. SAME. QUESTIONS. Thirdly, I’m pretty sure neurologists must be the highest paid people on the planet. They basically spend 10 minutes in the room with you and BAM! there goes a few hundred dollars.

Those random thoughts aside, I’ll pick up TheStory now. We went to see my doctor the very next day. And you guys, this is just how awesome the Lord is. I didn’t actually have a family doctor until a few months before this when I decided it was time to adult and get a check-up. After doing a lot of looking I finally found one that I liked and she is wonderful. Isn’t God’s planning great? I’m so thankful that when all of this started I already had a doctor I could go to…and she has walk-in hours first thing almost every morning. 🙂

I had already guessed what she was going to tell me. You, see my brother has epilepsy, so I know the signs and symptoms of a seizure and I had a suspicion. I outright told her that’s what I thought it was that had occurred but I wanted to know WHAT IN THE WORLD AND WHY AND HOW AND EVERYTHING IN BETWEEN. She agreed and ordered an EEG for later that week and made an appointment with a neurologist.

Have you ever had an EEG done? They make it sound very relaxing: “We are just going to hook all these wires to your head and maybe flash some lights at you and we may want you to try to take a nap.” Easy-peasy. Uh…no. They flash lights right in your eyes until you cry and your head is pounding and they make you hyperventilate to the point of almost passing out. Simply put, they are trying to induce you to have a seizure so that they can record it. Not a fun experience.

Later that week I got a call with the results from my test. They did not see any exact seizures, per se, however they did see some abnormal brain waves they would like to discuss. Ummm…can I have some more explanation, please? What exactly are “abnormal brain waves???”

Do you know what else I’ve learned about Doctors? They involve a lot of waiting. You sometimes have to wait weeks or months to even get an appointment. You have to wait to see the doctor and wait to get results. Even after you get a call with your results, you have to wait for the explanation. The receptionist was not able to give me any other information and I had to wait until my appointment with the neurologist.

Sigh. Waiting involves a lot of trust in the Lord, you know. Sometimes waiting can be the hardest part of difficult journeys. Whether it’s waiting for a job opportunity, or a prayer to be answered, or a brain issue to be explained, waiting tests our trust in God because we have no control. We have to trust that he knows best and we have to learn to be still before him. And boy, is it hard! And it’s something I had to learn.

So I waited.

 

(Disclaimer: Please don’t be offended if you are a doctor! I really do appreciate you all!)

 

April 10, 2016

It’s funny how a date can stick in your mind. Something happens and you never forget that date. April 10th is that day for me and actually today marks exactly 9 months since that day. Although at the time I didn’t even realize the significance of what had happened.

On that day, I woke up at 4:30am as normal and sat down at my iPad to start studying. I had been sitting there for a little while when the weirdest thing happened to me. Suddenly my whole body tensed up for just a second and then relaxed. It almost hurt but not quite. Almost like a jerk, but it was certainly not intentional. Oh well, back to studying. That’s usually what I do: ignore things like that. But then it happened again later. And before 7:30 that morning, it had happened 5 times and I was suddenly so tired that I wanted to go back to bed and sleep forever. So I was a little concerned but not enough to do anything.

So instead I went to work (which just so happened to be a longer day than normal) and got home (practically dead) and just laid on the couch. I felt terrible and tired, and I cried.

When my housemate got home, I finally told her what happened and we agreed (more like she forced me) to go to my doctor in the morning. Little did I know how many appointments would follow that first one.

Little did I know that my life had just changed completely.