Wednesday, May 27, 2015

Expletives. Expletives. Expletives!

That's all I can think right now. EXPLETIVES!

I can't believe that I have to write another one of these posts.

On Wednesday, May 27, driving on my way to work, I didn't feel right (and this honestly hit me fast. Like, "WTF?" fast). Usually before I get seizures, I get auras/flashes, my thumb will twitch, then my thigh will twitch. That progression usually takes 5-10 minutes, so I have time to realize what's happening and get to safety and get help. 

This time, without warning, my thigh began twitching. While I was driving. My entire life, this has basically been my greatest fear. But, I pulled over, still seizing, called Dave and told him what was happening. I was able to dial and talk on the phone and explain what was happening to me, which is amazing. The seizure actually stopped while just was still on the phone with Dave. He left to come get me and I focused on my breathing and stayed calm while waiting for him. It sounds funny (I know it's not), but I remember thinking, "Well, that wasn't safe..."

I still didn't feel right. Dave and I got back to the house and decided that we should go to the hospital. I needed to get checked out. My leg still felt numb and I just had this feeling it was going to happen again. And I was right. My leg began twitching again and Dave talked me through it. He helped me focus. Thankfully, it only lasted 30 seconds. 

We walked into the ER and explained what happened. Considering I had seizures so close together, they brought me back pretty quickly. Unfortunately,  while I was getting checked out, my leg started twitching again. I remember thinking that I felt like they weren't moving fast enough to get the seizure under control and I was getting frustrated. They just kept telling me to relax and in my head, they were dilly dallying around the room not doing anything about the seizure and just going through the rest of the routine tests. Since I got frustrated and panicked though, my seizure turned into a full fledged seizure and I started convulsing. It only lasted about two minutes. They got the medicine in me pretty quickly through the emergency IV (liquid Ativan I'm assuming). I remember making eye contact with Dave, him telling me he loves me and that everything was going to be okay. I tried to say, "I know" back to him, but it came out more like, "Ow."

I stayed the night in the hospital. They did the routine EEG (which came back normal only 4 hours after a seizure?), called my neurologist (who actually interrupted my EEG), and I was seen by three different hospital neurology team people to be assessed. 

The final decision was that the Zonegran isn't working like it's supposed to and that I should switch to Keppra. So, right now, I am weaning up to Keppra 1000mg 2x/daily. I will take this with the Lamictal XR and wean off the Zonegran completely. They want me to make an appointment with my GP and my neurologist now that I've left the hospital as well as a follow up. So far, the only side effect from the Keppra I've noticed is that it's made me exhausted. Pretty much all the time. I'm hoping that once I'm off the Zonegran though, that it'll change. 

I'm going to be okay. It sounds crazy, but I came out of this feeling like we are finally going to get this figured out. I can focus on the fact that it happened and that it sucks or I can focus on the fact that I'm OK, I have a family that loves me and overall, I have a lot to be thankful in my life. This is no where near the end for me. My life does not stop here. 

My husband is extraordinary. I love him more than anything. I would not be as strong as I am without him by my side. My baby boy is my world and I know that epilepsy or not, he is counting on me. He loves me unconditionally and still needs me now. 

You'll still be hearing from me. 

Tuesday, May 12, 2015

Memory Bank #164

I should never need a reason to be happy, but if I genuinely need one, my family is it. I forgot to post these the other day so I'm going to do it now before I forget again:

I have a son that most nights is a great sleeper now. Some nights though, he will fight me tooth and nail about going to sleep. He will flail. He will cry. He will push and do everything to make it as difficult as possible to get me to contain him to get him into a comfortable position to go to sleep. On this particular night, though, he didn't flail. He didn't cry or push. Instead, he lifted his head, pressed his nose to mine and said, "Boo!" and then quickly buried his head back in my chest and giggled. He repeated this about six times and each time laughed harder. By the third time, I lost it and was giggling with him. After he calmed down, he began "talking" to me. Colin showed no signs of slowing down. I have a son that no matter how tired he is, would rather play with me and talk to me, than sleep. While I've never doubted for a minute that my son loves me, here's physical proof for me to look back on when I need it.

I have a husband that I've been to the end of the earth and back with. There is no one who knows me better, takes better care of me or makes me laugh as hard as he does. On days where I don't feel it, he will remind me that I'm strong. That it's not about getting knocked down 11 times, it's about getting up 12. He reminds me it's also about enjoying the world around me and continuing to do the things I love with the people I love. Whenever I think about the favorite parts of my day/week, it usually isn't some event like going to a family member's house for dinner or something being accomplished at work. It's usually something that happened on the car ride there or sitting on the couch with Dave and Colin playing with us. Things like that stick out to me. Yesterday, we got to go on a dinner date and we were talking about work. He was talking about his company's manufacturing shipping process and there was a split second it clicked for me that it was great that we can really connect about his work now, unlike when I worked in retail (I work for a distribution software company - that's not new, it was just a thought I had in the moment). Later last night, I made iced tea. I do this every night and have been doing it pretty much all 6 years of our marriage with the exception of the 10 months we lived with his parents. When I came down with his glass, he kissed me (for my "payment," another ritual, lol) and say, "I love ya!" There's something about the way this makes me feels, every night, that makes it special. He is my best friend and the love of my life. I don't want to share my journey, my stories or my couch with anyone but him for the rest of my life. I am loved. Here is my proof.

My family is my world. I will be collecting memories for when I need them, but I have begun feeling better already.