Hospitals, 2 Neurologists, & Crazy Times!

*Disclaimer: this post is kind of long...I guess that's what happens when you don't write a post in forever! But there's a TON of stuff to share!*

I wrote a post the other day, but for some reason I kept forgetting to post a link to it so people could actually read it...what a notion, right?

So it's called "Learning to be the Passenger" and you can find a link to it  ===>>>HERE!!!<<<=== so take a second to go read that because it talks about our mini vacation-ish-thingy and my last appointment with Dr. P where I was told my driving privileges are still suspended :( BUT I won't spoil too much of the surprise! SO go read it! However, it's slightly outdated, so that's where this blog post comes in...
OH and there are a ton of AWESOME pictures! 
Including this little gem:

 SEE! I told you it was worth a gander! 


Anyway, crazy things have been happening around here. I promise I haven't dropped off the face of the planet. I have been super busy. That, and I have been pretty overwhelmed with life. I think I've had this fear that if I blogged about it, it would become more real and I would have to deal with it. It's stupid, but maybe that's what I was thinking. Truthfully, I do need to deal with it! Also, I realized today (after I cried my eyes out to about everyone I talked to today) that I need somewhere to vent to, and I need something to help me get my feelings out. I guess I forgot that this blog served other purposes...it helps me as well spreads word on how I'm doing to family/friends and whoever else wants to know. It's so therapeutic! Also, I totally used it today when I couldn't remember something at a doctor appointment! It was a good thing I wrote it down here! 


So let's talk about my health, shall we? The last time I wrote, I wasn't planning on seeing the new neurologist for a while, right? Well, things have changed. They called and got me in! However, I need to back up and tell you about what happened before that... 


I have been doing great on the Keppra until Thanksgiving, and that's when things started getting weird again. That day, I started having this strange feeling that something was very, very wrong. There is a sensation that can occur before a seizure that they sometimes refer to as an "impending sense of doom." I think that's a bit of an extreme term, but it basically means that you feel super unsettled and you have this overwhelming feeling that something is wrong, or that something really bad is going to happen. So I felt this on Thanksgiving after Randy and I got to his parents' house, but then Randy realized he forgot something at home, so he left for a minute to go get it. Since we live about a mile from them, it's not a big deal if we ever forget something. This feeling I had got so bad that I had to call Randy to bring me different clothes, since I was kind of dressed up. I felt like I was about to scratch my skin off. It was really strange. I got better, but later that night my limbs started jerking as I was laying on the couch with Randy. It wasn't like they were flailing or anything, but it was like they were twitching times 10. It was bad enough that they were literally making me jump. It was strange. It almost felt like I was being stuck with a needle, or hit with a reflex hammer (like at the doctor). 

Then, last Monday I had the worst seizure I have ever had. It was awful! I was having dinner with Randy and his parents at their house, and I started staring off into space for a while as they were talking about who was going to take me to school and pick me up for my neurologist appointment - because I got in to the doctor early! - and they asked me what time my class was over because I had to be at the doctor by 11, but my class let out around 10:45 or so, but they didn't know exactly what time. So at first I said, "uhh, 10:15" and Randy looks at me and says, "That isn't when your class is over..." I remember seeing the correct time in my head, and I remember stammering a little, but I couldn't say the right answer. At that point, I looked at Randy and said "something is wrong." My head was getting really fuzzy and it was hard to think about anything. He asked me what it was, but all I could say was, "something is just wrong." Then he knew there was really a problem...I think I started leaning over a little, too. Tears started rolling out of my eyes and I just said, "I don't know the answer." I also remember feeling like my forehead was swelling and getting really hot, but Randy said nothing was happening. He actually told me that it looked like my face was completely blank and expressionless, which is extremely strange considering I felt like I must have looked terrified. I felt terrified, anyway! I felt trapped inside of my body. After those brief moments where I could talk to them, I couldn't really talk for a few minutes - I was trapped. I felt dizzy and confused, and that lasted even after I was able to move again. When I finally snapped out of it, my body de-stiffened, and I could move again, then they moved me where I could lay down and pain began to surge through my body and my limbs jerked like they did on Thanksgiving. They have never done that after an "episode" before, so that was kind of scary. This was definitely the most advanced seizure I have ever had. They are definitely getting worse.


As far as doctors go, I saw my first of 2 new neurologists and he is awesome! Let's call him Dr. Fred, shall we? He's a little abrasive, but he's SO GOOD!!! He's the one I have been talking about - the one who is supposedly one of the top rated in the world! I believe it after having been to him. He's a pretty cool dude. I was a little nervous because when I read some reviews, there were some people who said he was awful, but I trusted the advice of the couple who recommended him, as well as his reputation, so I decided to go for it anyway! I'm glad I did! He is committed to helping me. He is a headache/migraine neurologist, so he isn't really there to help with the epilepsy, but it turns out I also have a chronic headache/migraine problem anyway! I mean, I knew I had a problem with migraines, and I knew I got headaches, but who doesn't? Well, it turns out I have a BIG problem...and he is just the guy to help! I mainly thought I was going to him in order to get a referral for an epilepsy specialist, but it looks like I need him, too! I mean, I have had severe headaches since I was 6-7, if not younger, on almost a daily basis, but I never knew it was a problem. It never messed with daily life - that's what advil is for. You don't go to a doctor for a headache! I mean, COME ON! When I was filling out his paperwork and talking to him, he was like, WHAT?!?!? THIS IS NOT NORMAL!!! Also, he thinks it is really important to find non-drug approaches to care and pain-management, so he works with a team of physical therapists and psychologists to see if there is another way to manage your pain by changing something in your lifestyle with a diet change, acupuncture, counseling, or something else...
He's pretty cool. Oh, AND he referred me to an AWESOME epilepsy specialist that is literally 30ft from his office. I'm excited that he wants to fix both problem areas. That was my problem with my last neurologist - he recognized that I had a migraine problem, but he wanted to "wait and see how things went with the epilepsy." This doc sees that both things are issues, but he isn't making me choose which one to fix, so that's awesome.
Oh, and he said he might put me in the hospital because my headaches/migraines are so severe that they might need to do IV therapy for a few days to kind of restart my brain. I think of it as dialysis for your brain, haha. He said he isn't sure if he'll do it or not, but he "doesn't want me to be surprised if he starts throwing those words around."
He's pretty spunky, though. He told me to keep a journal of everything that happens and I told him I've never been great at keeping one, and he said, "you'll learn." He also told me "tough noogies" at one point during the appointment, too hahah. I believe that was when he told me I needed to get better sleep and I told him I'm bad at going to bed when I need to, and part of that was being in college and such...yeah, Dr. Fred and I are going to get along just fine. Also, I LOVE my nurse at his office! She is great!


So now I also see Dr. Sim. and she is the epilepsy neurologist and I like her a lot, too. I have heard nothing but great things about her, and I believe them all after meeting her! First of all, they don't have nurses at their office, which might be a little weird, but it's nice because the doctor comes to get you from the waiting room, and you go straight to the room and begin talking to the doctor, so there's no more waiting after the waiting room! It's pretty neat! Also, her staff is AWESOME!!! Definitely some of the nicest people EVER! I never thought I would have 2 neurologists, but it's working for me.
Anyway, she didn't have much to say, but she wants to do this epilepsy "study" on me, where they will hospitalize me for 5 days, take me off of all of my medication (even the seizure medication), hook me up to a bunch of machines, video monitor me, and basically wait to see what happens. It'll basically be like an EEG on steroids. I'm allowed to have visitors, and I'm allowed to watch movies and such, but I just have to stay in the room. She said she won't really have any opinions or plans until those results come back. I think she just doesn't want to tell me something and be wrong. I mean, when I first went to Dr. P it looked like I had an auto-immune disease, and he really thought it was, so he told me what he thought...then the tests proved him wrong. It may look like one thing and be totally off, so you can never be too sure - especially with the brain! It's so tricky. My condition is so abnormal, too, so I'm kind of glad she's being cautious.







So there's a possibility I'll be in the hospital twice in the next month or so!

I'll definitely be there once, though! Crazy!
They originally told me I could do it next week, but I declined because my big brother is graduating from college and I wouldn't miss it for the world!!! I'm SO proud of him!!! Congratulations, Brandon! I love you!










As far as the rest of life: my memory is AWFUL, but it comes back every now and then. The other day was kind of an emotional mess for me, though. I couldn't even remember our address, and that kind of sent me over the edge. It is getting really bad, but I'm managing. It can be horribly depressing at times, though. I know sometimes people forget things, and I know that's normal, but I know me...I know what is normal for me, ya know? This is not normal. The worst part is not knowing if it is the seizures or the medication causing the memory problems...If these are, in fact, temporal lobe seizures, it is common for memory loss to happen, and get worse with the seizures...but if it's the medicine, it might get better eventually if I switch medications or something, or maybe someday I can get off of them. I will most likely need to be on the anti-seizure ones for life, though. Who knows?







Other than that, things have been pretty good. We went to a wedding of some good friends of mine and it was wonderful! I'm SO happy for them! It was a beautiful wedding and we really enjoyed it! We also got to see my parents, which was really special :) I hadn't seen a lot of my friends that were at the wedding, so that was nice, too! It was a good trip, but an exhausting weekend. I can't help Randy drive anywhere anymore, so that puts a damper on things now, but it was still a great trip. I'm super happy for my friends, though! I wish them many, many years of happiness! They totally deserve it! I know God will bless them greatly! Congratulations, Kevin and Melanie!








Lately, I have been having kind of a rough time processing everything and my heart has really been hurting. I feel like the Lord has been placing the song "Your Hands" by JJ Heller on my heart to help me through lately. So I'm going to post the lyrics and the video here. It's absolutely beautiful. I hope it touches you like it touched me.

"Your Hands" - JJ Heller

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking, Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the earth
You healed the broken, lost and hurt
I know You hate to see me cry
One day You will set all things right
Yeah, one day You will set all things right

When my world is shaking, Heaven stands
When my heart is breaking
I never leave Your hands

Your hands that shaped the world
Are holding me
They hold me still
Your hands that shaped the world
Are holding me
They hold me still

When my world is shaking, Heaven stands
When my heart is breaking
I never leave You
When my world is shaking, Heaven stands
When my heart is breaking
I never leave
I never leave Your hands