That's how long I made it seizure free this time.
I was OH so close to that five year mark, which I was looking forward to celebrating.
A month ago today (well, tonight really) I had a seizure while home alone, getting ready for bed.
Eric was in California. Max was still wide awake and playing with his LeapPad in our bed at 11pm (don't judge...) with the lights on. And Sammy was lounging on the bed since dad was gone.
I looked at the stuff sitting on the edge of the bathtub, grabbed a couple of things to put back under my sink and WHAM! Deja vu hit. I acknowledged it and went about putting things away, and as I opened the drawer in the bathroom to get out my toothpaste the deja vu intensified and I thought "I wonder if this is what it feels like before you pass-out?" I remember bracing myself on the counter and thinking I need to get on the floor just in case.
And I was too late.
Next thing I knew I was picking myself up off the floor and grabbing my head which hurt like no tomorrow. I didn't even question why I was picking myself up off the floor until Max said from the bed, "What just happened?" Good question, kiddo, good question. Thank goodness he didn't see me fall, but he clearly heard it.
All sorts of panic set-in at that point.
I knew what happened. The deja vu was the truth teller. Even though I didn't bite my tongue to pieces and my body didn't feel like I'd been hit by a semi, the deja vu was my clue.
I called Eric twice, to no avail.
I called my parents (nothing like getting a call at 11:30 at night from one of your kids, right?...)
I didn't know whether to dial 911 or not. I had clearly whacked my head and my right side and hip hurt.
But if I dialed 911, what in the world would I do with Max. With still-awake, he-needs-to-get-to-sleep Max.
I called the on-call neurologist and then called Eric one more time (yes he answered this time!) on my cell while I waited for the on-call doctor to call me back on the home phone.
And then I was a panicky, crying, little kid mess.
I pulled it together when the doctor called. And let's thank the good Lord above he was a nice doctor at 11:45 at night (come to find out he had a new baby at home as well... But he gets paid nicely for what he does so I only felt bad for a nanosecond.) He asked if there was anyone who could come watch me while I sleep. I laughed. I have friends, but I don't think any of them really want to stay awake all night to watch me sleep in case I have another seizure. But thanks for the idea, doc.
I took an extra Keppra XR, a tylenol for my pounding head and some Zofran for the nausea that had set-in by then.
I convinced my crying child who had gone back to his room (and anyone who knows me, knows my child hasn't slept alone in years...) to come get back in bed with me. That I was okay (Um...yeah that was a lie) and that he should come sleep with me.
Eventually we were all back in bed. Max zonked out while I lay awake panicked about sleeping.
I think I was more concerned I had a possible concussion then I was of having another seizure.
And eventually, sometime after 2am, I fell asleep.
All the while praying I wake-up in the morning.
*****
So now it's been a month.
I've been on a doubled-up dose of Keppra for a month now.
I've been asked numerous times by people - How do you live with the fear?
I will answer that question tomorrow.
*A happy light spot of color and new growth photo (edited solely in LR4, I might add!)
**You may wonder why I'm sharing all of this with you. I'm writing it out more for me and my family, really. As a record of events as they happened. I never have had the best memory and I feel like seizure meds have robbed me of that a little more. I'm not looking for pity or sympathy. It is what it is.
I have epilepsy. It's part of who I am now. It doesn't define me, but it's part of my story.
9 comments:
Thank you for sharing this. Epilepsy is so foreign to me, but I keep finding new connections to it. I want to understand more. I'm so sorry you didn't make your 5 year celebration. Hopefully this time you will.
I think you are very brave and very strong, Andrea.
I'm so sorry this happened and I am praying that you get your new meds figured out with minimal side effects and that you remain seizure free and that God will calm your fears. xo
You are a strong woman to stay calm through that when you had to be strong for your son. Praying that you get some relief from the seizures and the fear.
Sheesh. I can't believe you went to bed. You are strong, sister. I'm praying for you too to find that perfect balance of medication and that you will experience peace of mind as you live with the diagnosis of epilepsy. I love your attitude that it's only part of your story. Very true!
Thinking of you... as Brady's young teenage cousin has severe epilepsy. I love how you said that, you don't let it define you. As well as his cousin, she does HOCKEY! How great is that? I also cared for someone that had epilepsy and I think it's important to be aware of these things. I once had a two year old have a seizure in front of my eyes, you bet I did cry. It was so hard to witness that.
You are a strong and very creative woman, great mama as well. XOXO
So scary. This has to be frightening as a child or an adult but when you put that added label of "mom" on it, it just multiplies. You are responsible for someone else. You can't be sick. Or so we seem to tell ourselves. So glad that you shared something so personal with all of us. I hope that this was just a one time thing and it has passed.
I was actually with Jean when that 2 year old had the seizure and it was frightening. Straight up panic mode.
Keep fighting Andrea, we are all behind you. ♥
A, I cannot imagine the fear of having a seizure. I read both posts and then thought about them and you. I have a couple of friends who have lived through the same experience: seizure, meds, then a break through seizure, the questioning and the fear. I even feel a bit of fear for them bc the unknown is scary. I don't know why God chooses some crosses for us to carry while others have different burdens. I just know that I will continue to pray for you and your safety, and healing, and your emotions. A big hug to you my friend.
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wow, girl. i am so sorry. i wondered why you had gone m.i.a. for a while. now i know. i think it's great that you can share about it. it helps people like me who have no comprehension of what a life with epilepsy is like to understand more. i know it doesn't relate to what you shared if i comment about how beautiful that photo is, but it's here and it's beautiful, so i can't not mention it. i love this photo!!
wow, girl. i am so sorry. i wondered why you had gone m.i.a. for a while. now i know. i think it's great that you can share about it. it helps people like me who have no comprehension of what a life with epilepsy is like to understand more. i know it doesn't relate to what you shared if i comment about how beautiful that photo is, but it's here and it's beautiful, so i can't not mention it. i love this photo!!
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