Finally Facing It Part 1)

I've put off this post long enough, I didn't want to write it because if I did, it meant that all of this was true and not some horrible dream I'm having. Why can't this just be a horrible dream I'm having?

-----------------------------------------------

On June 6, 2014, while I was at work, I started experiencing some auras and was feeling a little dizzy. I went into the bathroom to put my head between my legs and try to collect myself. I did my breathing exercises and was trying to take hold of the situation, but it was too late.

I felt like leg go and I began having seizure-like seizing (more later on why I word it this way). It lasted for about 3 minutes and after it was over, miraculously, I got up, I called my family to come get me from work, told my boss I was leaving and acted like nothing happened.

I still didn't feel right though. Something still wasn't right.

My father-in-law got me. On the way home, he kept asking how I was feeling. If we should go to the hospital. It wasn't until we got near the exit to our house that I told him that I thought I was going to have a seizure and that we should go to the hospital. We got Dave (the hospital is 250 yards from our house) and then it started.

It lasted about 20 minutes. There's a lot missing. However, I remember thinking, "Why isn't this stopping?" and the seizing was more in my groin and that hurt more. I remember my father-in-law telling me to "settle" and thinking, "I can't." I was admitted to the hospital and was there for 2 days. There's a lot missing from those 2 days. I have disjointed memories. I remember random specific things like thinking that the idiot nurse we had looked like Andy Dick and that before I went to sleep I watched an episode of "King of Queens" with my mom. It was a weird experience for me.

One of the doctors at the hospitals explained to Dave and me that what happened at work probably wasn't a seizure, but more likely a "warning shot." Something called Psychogenic non-epileptic seizures (PNES). They aren't necessarily seizures, but present the same symptoms without the brain charge that an epileptic charge has. They are common in people with people who have complex partial seizures.

It's now January 3, 2015 and I'm still seizure-free. 

To be continued...

Whatever you do, you need courage...

"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them." - Ralph Waldo Emerson, American Poet and Essayist, 1803-1882

A Letter to My Son

I've been thinking a lot about the lately, so I thought I should get my feelings down on paper. Maybe it'll make me feel better.

Dear Colin,

It's 3:30am. Yesterday, you turned 4 months old. 

I'll admit, hearing you cry at 3am, letting me know you need me, has me struggling to stay awake most days. There have been many nights where my first thought was, "Ugh, he's up again..."

Tonight though, as you lie strewn across me with your tiny fingers so sweetly on my chest, as if to say, "This one's mine," something resonated with me.

You need me now. And you're not always going to.

Right now, in this moment, what you need is your mommy to feed you and snuggle until you fall asleep. It gives you fulfillment and comfort. Right now, you need Daddy and me to hold you close because it lets you know you're loved and helps you feel secure. Right now, we can make your sadness go away, fix where it hurts and be everything that you need. And one day - we just won't be enough.

There's going to come a day where you won't need me to fix it. One day, nothing I say or do will be exactly what you need in order to feel better. One day, I'll offer advice and you'll say, "I'll ask ______ what he thinks." And that opinion will be held higher than mine. And that's okay. It's part of growing up. If you get to that point, it means we did something right and you are growing into your own person.

As I look at you now though, I hope you know that there is nothing I wouldn't do for you. Same goes with your father. We love you unconditionally. You can always come to us when you need us and we will always try to understand and listen. 

So, today, in this moment, I need to remember that day will come someday - but it's not today. Today, you need me and I can make it better. So, even though I'm exhausted and you're already asleep, I'm going to sit here and continue to rock with you a bit. Because I can't take moments like this for granted. I won't always have them.

I love you.

Asleep in my arms.

Next Steps

I had another seizure in April. It lasted less than 30 seconds and I am totally fine. 

We figured out that the new birth control the OB prescribed me (generic for Aviane) had an interaction with the Lamictal. Both of my seizures occurred on the same day of my birth control pack. Once we realized this, we immediately switched me back to the Yasmin. Since then, everything has been done.

Currently, I'm sitting awake downstairs because today I have a sleep-deprived EEG. It's 6:25am and I am sleepy. They are doing this to confirm that nothing else is going on.

Colin currently has an ear infection and pink eye and unfortunately, is in excruciating pain. It's so sad. He's taking an antibiotic and I'm hoping it kicks in soon. I hate seeing him like this. I feel like he's been sick forever. I feel like this is my fault and like I'm doing something wrong.

I'll update when I find more out.

Getting Back to Normal

It has been almost 3 weeks since my seizure. I'm feeling totally fine (other than lack of sleep from taking care of Colin). I believe that Colin and Dave have a lot to do with me feeling as good as I do. I have to be resilient for them. I'm at peace with what happened and have been really engulfed at work. I came back to a busy, busy workload, which is great because it keeps me distracted. I'm definitely not bored anymore.

I still feel like people are walking on broken glass around me, as if I'm not alright and anything other than an ideal situation will set me off - either emotionally or now physically. I understand it since it's the first it's happened in a long time and for some, especially Dave, it's their first time experiencing it with me. I understand that people just want me to be safe and healthy, but I'm still the same person. I'm getting the ability to drive again back next week. Hopefully, that independence will be the start of things being normal again.

I am so blessed to have such amazing family and friends that care so much about me. I love them all so much. I just don't want them to feel like I need to be bubble-wrapped from here on out.

Driving Restrictions

I've received a few questions about my driving restrictions. Overall, the rule is that if you've had a seizure, you can't drive for 6 months. However, there are conditions in which a person wouldn't be "disqualified" from driving.

According to PA Code 83.4:

 (b)  Waiver. Waiver of the freedom from seizure requirement may be made upon specific recommendation by a licensed physician if one of the following conditions apply:

   (1)  A strictly nocturnal pattern of seizures or a pattern of seizures occurring only immediately upon awakening has been established over a period of at least 2 years immediately preceding, with or without medication.

   (2)  A specific prolonged aura accompanied by sufficient warning has been established over a period of at least 2 years immediately preceding, with or without medication.

   (3)  The person previously had been free from seizure for a 6 month period and the subsequent seizure or seizures occurred as a result of a prescribed change in or removal from medication while under the supervision of a licensed physician. This waiver will only be provided upon reinstitution of previous medication.

I was seizure-free for 21 years and the reason the seizure occurred was because my medication was lowered too low. They have since put my dosage back to where it was. I am allowed to drive because of point 3.

The full explanation of this can be found here:

http://www.pacode.com/secure/data/067/chapter83/s83.4.html

I can't believe I have to write this post...

FYI - this is going to be long 

I can't believe I'm actually saying this...

I had a seizure. My first seizure in 21 years. 

I woke up with a migraine that had a ton of auras. I felt terrible. I wasn't surprised since Colin had a little bit of a rough night and we were up a lot. I had gotten up with Colin for his morning feeding (and to get him up for the day). When Dave came down, I actually went back upstairs to nap for an hour. My headache was only getting worse.

I was bringing Mucinex downstairs for Dave (he hasn't been feeling great the past few days) and when I got to the lower level stairs, I felt my leg twitch. I sat down on the stairs and my leg continued to twitch more. Dave put Colin down in the pack and play and picked me up to get me to the couch.

That's when it started. I had a seizure that lasted about 4 minutes. It was over before Dave was even off the phone with 911. I was fully aware that it was happening. Dave was with me the entire time and was reassuring me that everything was okay. We had the ambulance take me to the hospital to get monitored. Dave's family came over I watch Colin and my mom and dad met us at the hospital.

At the hospital, they took a trough level and checked for eclampsia (it can cause seizures postpartum). The test for eclampsia came back negative, thankfully. It was more a whole bunch of waiting for people to come in and out of my room. In the meantime, we all watched the Flyers game (holy moly, they won!).

Dr. L called this morning to discuss what happened and give me some instruction. She raised my meds back to 200mg 2x/daily, which I feel is the right decision. She also doesn't want me driving for a month or holding the baby for two weeks (one of the first questions she asked me was if Colin was okay). It's so frustrating. Honestly, it doesn't feel real.

I am so happy that I wasn't holding Colin when this happened. I am so glad he's safe and is none the wiser to what happened. I am sad that Dave had to experience that with me, though. It's extremely scary and something that I never thought he would have to see. In a strange and horrible way though, it's good, because now there is literally nothing we haven't been through together. I'm angry that it happened and once again, I'm going to be an inconvenience to the people around me. 

I always knew in switching meds and getting pregnant that this was a possibility. With the change in hormones, lack of sleep, stress and addition of birth control and medication for PPD, my body has a lot going on. Yes, it sucks, but my epilepsy still does not define me. I will not consistently feel bad for myself that this happened. My life is amazing. I have a wonderful husband, beautiful baby boy and fantastic family and friends. I am happy. This is just another paragraph in a chapter in my life. It doesn't get its own chapter.

Alright, going to get something to eat with hubby. :)