Sleepless in…Dayton (Part 3)

During my second day of testing, one the nurses asked me if Doctor so-and-so (the Epileptologist) had been in to see me yet. I told her that I wasn’t sure because so many people had been in and out. She replied, “Oh, you’ll know her. She’ll have an entourage of medical students following her around.” The nurse was right. The next morning a doctor walked in and I knew exactly who she must be because there were 6 students right at her heels.

She told me that I could go home that day. She explained what they had seen. Apparently, my brain has these abnormal high waves all the time and they aren’t sure why. They have the potential to turn into seizures but they aren’t actual seizures. They only saw a few actual seizures while I was there even though I felt like I was going crazy the whole time. Her solution: put me back on the meds until we find the right one.

I felt a little stunned. I had gone through all of this only to be right back at the same place. Still no answers really. Just more medication to control symptoms, not fix the cause.

But God was teaching me something in that hospital bed. The first night, when the nurse woke me up to check my blood pressure, I got up to use the restroom. Which is really difficult, by the way, when you have 26 wires coming off of your head and 5 off your chest. As I went to wash my hands, I fell. With no warning, a seizure came and BAM! I was suddenly sitting hard on the floor. I was so surprised that it took me a minute to get back up. You see, every seizure I had had before that one, came with a warning sign. That was the very first one that came with no warning whatsoever.

Because I always had warning, all the nurses had let me use the restroom by myself even though technically they weren’t supposed to, but now that was over. A nurse had to be with me every time. Talk about humbling.

The worst part was, as I crawled back into bed exhausted that night, I realized I had lost my last bit of control. Having that warning gave me the assurance that I could always be sitting or leave the room but that was gone now. Suddenly the world felt a little more unsafe than it had a few hours before.

As I laid in my own bed on my first night at home, my heart was in a lot of turmoil and I couldn’t fall asleep. I was talking to God about how I had wanted that control and warning and how I was afraid now that it was gone. I realized I was going to have to up my trust game. I was going to have to pray for God to give me trust in him more than ever before. Have you ever had God answer a prayer immediately? In that moment, as I prayed for God to calm my heart and give me trust in him, I felt a wave of peace come over me such as I have never felt before. I thanked him and fell asleep right away.

So no, I still had no answers. No magical potion to make everything go back to the way it was. But I do have a God with answers and as hard as it is sometimes to actually do, I knew I could trust him and rest in him.

 

(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.)

 

Sleepless in…Dayton (Part 2)

Have you ever been really thirsty and gone to take a drink out of a water bottle only to discover that it’s really flavored water and not regular water? And it wasn’t at all what you expected?

That’s how I felt with this monitoring. I had it so set in my mind that all I was going to do was lay there and sleep and relax, maybe watch some movies, or read a book and it turned out to be something completely different.

Sleep deprivation is terrible. Let me just say that. After the second round of 21 hours awake and four hours of sleep, I was talking nonsense and I knew it. I have never been so tired. The one night they woke me up in the middle of my four hours of sleep to do a routine blood pressure check! Also, they try to induce seizures while you are under the monitor. So they bring in the strobe lights, played all sorts of different sounds, and they try to stress your heart and your brain in order to cause seizures.

Now, would you like to know the good parts?

-Friends can visit! This hospital does the monitoring in the ICU so technically you are only allowed to have 2 visitors at a time but I know at one point we had 6 people in the room. So many wonderful people came to visit me over the few days! My mom spent the days with me and Natalie spent the nights since she was working and that was the only time she could visit. Natalie had the worse end of the deal- she ended up being the one keeping me awake until 2am.

-Thank Jesus for the Olympics!!! You know, I NEVER get to watch the Olympics because I don’t have cable but because I was sitting in the hospital, I got to watch more than I ever have before!

-You get to wear pajama pants the whole time! I didn’t have to wear a hospital gown as long as I followed their standards for what you needed to wear (which, fortunately, I had read ahead of time) so I got to wear my own clothes.

-You can play with the monitor. Ok, probably shouldn’t have been doing this, but it didn’t take me long to find out that if I clenched my teeth together the EEG monitor would go crazy. I never got in trouble for it….

-I had one really awesome nurse! Actually, she was the night tech and she was amazing. That girl needs a raise. The first night she came in and found how tight my head was wrapped (it was cutting off the circulation to my ears) and she re-wrapped the whole thing. She explained things to me which no one else had taken the time to do and I am so thankful for her!

 

(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.)

 

Sleepless in…Dayton (Part 1)

By the end of summer 2016, I had been to two different neurologists and on 4 different seizure medications. I still didn’t have answers. I didn’t even have an official diagnosis. The meds either didn’t work to control the seizures or the side effects were so bad (my body hates medicines) that I had to be taken off of them. I had also been to a homeopathic doctor and there was no help from the natural end of the world either.

So my doctor decided it was time to do the test I had been avoiding for 3 months: EEG monitoring. This is where you go into the hospital for 3-5 days (you don’t know how long you need to be there until they start monitoring and gathering data) and they do a continuous EEG on your brain. I had been dreading this test for a couple reasons: a) they take you off all seizure medication during it and I wasn’t looking forward to that. b) I was going to be missing my favorite week of camp back at work. c) what in the world was I supposed to do in the hospital for 3-5 days hooked up to all these machines??

My mom and sister both came up for the testing and bright and early on August 9th, my mom drove me to the hospital. We got checked in and they started hooking up all the wires to my head and chest and then they wrapped my head to prevent the wires from falling off. The nurse wrapped my head very tightly and she told me that it was because she didn’t want to have to redo it. I actually still have a mark on my forehead from where one of the electrodes was pressed into my head. During the testing you are on video, sound, and EEG record and a tech watches you 24/7. I had this brilliant idea that I was going to use this time to rest my poor body. It needed rest so badly so I planned on getting as much sleep as possible. Since we had had to wake up early to get to the hospital, once everything was hooked up, my IV was in place, and all the nurses left the room, I settled in to take a nap. I was just about asleep when the tech came in the room.

“Hey, honey. You know you can’t fall asleep, right?” Uh…nooooo. “They have you on sleep deprivation right now so we need to keep you awake for roughly 21 hours and then we’ll let you sleep for 4.”

Oh. That would have been nice to know the night before because I probably wouldn’t have stayed up late talking with my sister with this nice thought in my mind of sleeping at the hospital the next day. Suddenly I felt overwhelmingly tired and I was stuck sitting in bed… this was going to be a long day.

When my first meal arrived that day, I bowed my head to pray and said, “Lord, thank you for…” and I started to cry. It occurred to me how unthankful I had been for this opportunity. There are so many people in the world who don’t have access to medical care or the financial means to use it and I had be so ungrateful for my chance to do this testing. I had been caught up in how much I didn’t want to go and how unpleasant it was going to be that I had forgotten to thank God for giving me this chance to find answers.

 

(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!)