I had my first seizure when I was 21. I didn't know it was a seizure at the time. It just seemed all foggy and confusing and then I could hardly move. For hours.
I went to the ER hours later because of how I could hardly move. I couldn't walk on my own, really. I was too weak. We waited in the ER for a long time when I unexpectedly felt fine. We went home.
Over the next several months I went through MRIs, EEGs, EKGs, glucose tolerance testing and much more. I was diagnosed with epilepsy and put on meds. I lost 1/3 of my hair. I had seizures 3 and 4 times a day. Even on meds. Which made me feel drunk and on an emotional rollercoaster. Oh, and did I mention I was 21 and losing my hair? Cuz being a bald woman is something that is bigger and scarier than it sounds.
Is it as bad as being quadrapeligic? Of course not. But its no small thing.
I tried different meds. My hair stopped falling out. But I was still an emotional mess and I still had seizures.
After months of this, I gave up. I stopped taking any meds. I figured what was the point of risking the side effects of medication when the medication wasn't stopping any seizure side effects anyway? So I quit.
I quit drinking. I quit staying out and up all hours. I quit eating shit for meals. And I started running.
I decided to run a marathon. It gave me a goal and a focus. At one point early in my training, I seized mid stride and fell flat on my face. I got up and finished my run. And after a year of training, I crossed a finish line.
And cried. And celebrated. (With a beer.)
Years later, there was a new medication on the market. I tried it. There is a fatal rash associated with this medication. But no birth defects (unlike the other meds I'd taken.) I cried hysterically for hours every time the dosage was upped. And my sex drive snuck away when I wasn't looking. I had no drive. I mean, none. It just didn't ocurr to me.
By this time, the changes I'd made to my health and lifestyle meant that I was down to 3-4 seizures a year. I decided I could deal with that.
I went back off meds.
I got married a couple of months later. I had a seizure the day after the wedding. I was ok with that too. I was exhausted and it had been a very stressful time.
I only had 2 more seizures after that. And one of them I'm not sure if counts. It was so mild.
And now its been over 2 years. 2 years of no seizures.
But I'm pregnant. And things at work have been beyond stressful. So I got a little worried. Plus, I'd really like to have the birth take place out of a hospital setting. In a perfect world, I'd have the baby at home. I know a nurse midwife to do the catching. But first I had to see a neurologist.
So I went to the neurologist. I had to make 4 appointments before one stuck but eventually I got in to see him. And I was nervous. Really nervous. I was absolutely certain the doctor would have some alarmist attitude that would say I was not a good candidate for home birth and would try to pressure me to go back on meds and put my life through upheaval again.
That wasn't at all what happened. The doctor said he felt it was very likely that I could turn the page on this chapter of my life. Those were the words he used.
He ordered a 72 hour EEG, which means I'll get to spend a weekend walking around with electrodes on my head and not showering but I can deal with that. He wants to use it to confirm that there is no seizure activity going on. Meaning, I could be in the clear.
He said he saw no reason I couldn't have my baby at home.
Its put me in an outstanding mood. But also had me thinking about all the lonely times when I couldn't drive and was scared of how the seizures that were happening one after another might ruin my mind. My beautiful, smart, snappy, snarky, spunky, silly mind.
I was at an AA meeting with my dad (he's a recovering alcholic) and they talked about how you are not your disease. But it is a part of who you are. And its strange to let it go. Its like an ugly scar that you grow used to. And it might be fading before my eyes.
Its something to celebrate, but its also something to say goodbye to. When the time comes. When the baby's over the 6 or 8 week mark and I still haven't had a seizure. I'll forget where I set that scar down, the light white one that used to be in the back of my mind.
I went to the ER hours later because of how I could hardly move. I couldn't walk on my own, really. I was too weak. We waited in the ER for a long time when I unexpectedly felt fine. We went home.
Over the next several months I went through MRIs, EEGs, EKGs, glucose tolerance testing and much more. I was diagnosed with epilepsy and put on meds. I lost 1/3 of my hair. I had seizures 3 and 4 times a day. Even on meds. Which made me feel drunk and on an emotional rollercoaster. Oh, and did I mention I was 21 and losing my hair? Cuz being a bald woman is something that is bigger and scarier than it sounds.
Is it as bad as being quadrapeligic? Of course not. But its no small thing.
I tried different meds. My hair stopped falling out. But I was still an emotional mess and I still had seizures.
After months of this, I gave up. I stopped taking any meds. I figured what was the point of risking the side effects of medication when the medication wasn't stopping any seizure side effects anyway? So I quit.
I quit drinking. I quit staying out and up all hours. I quit eating shit for meals. And I started running.
I decided to run a marathon. It gave me a goal and a focus. At one point early in my training, I seized mid stride and fell flat on my face. I got up and finished my run. And after a year of training, I crossed a finish line.
And cried. And celebrated. (With a beer.)
Years later, there was a new medication on the market. I tried it. There is a fatal rash associated with this medication. But no birth defects (unlike the other meds I'd taken.) I cried hysterically for hours every time the dosage was upped. And my sex drive snuck away when I wasn't looking. I had no drive. I mean, none. It just didn't ocurr to me.
By this time, the changes I'd made to my health and lifestyle meant that I was down to 3-4 seizures a year. I decided I could deal with that.
I went back off meds.
I got married a couple of months later. I had a seizure the day after the wedding. I was ok with that too. I was exhausted and it had been a very stressful time.
I only had 2 more seizures after that. And one of them I'm not sure if counts. It was so mild.
And now its been over 2 years. 2 years of no seizures.
But I'm pregnant. And things at work have been beyond stressful. So I got a little worried. Plus, I'd really like to have the birth take place out of a hospital setting. In a perfect world, I'd have the baby at home. I know a nurse midwife to do the catching. But first I had to see a neurologist.
So I went to the neurologist. I had to make 4 appointments before one stuck but eventually I got in to see him. And I was nervous. Really nervous. I was absolutely certain the doctor would have some alarmist attitude that would say I was not a good candidate for home birth and would try to pressure me to go back on meds and put my life through upheaval again.
That wasn't at all what happened. The doctor said he felt it was very likely that I could turn the page on this chapter of my life. Those were the words he used.
He ordered a 72 hour EEG, which means I'll get to spend a weekend walking around with electrodes on my head and not showering but I can deal with that. He wants to use it to confirm that there is no seizure activity going on. Meaning, I could be in the clear.
He said he saw no reason I couldn't have my baby at home.
Its put me in an outstanding mood. But also had me thinking about all the lonely times when I couldn't drive and was scared of how the seizures that were happening one after another might ruin my mind. My beautiful, smart, snappy, snarky, spunky, silly mind.
I was at an AA meeting with my dad (he's a recovering alcholic) and they talked about how you are not your disease. But it is a part of who you are. And its strange to let it go. Its like an ugly scar that you grow used to. And it might be fading before my eyes.
Its something to celebrate, but its also something to say goodbye to. When the time comes. When the baby's over the 6 or 8 week mark and I still haven't had a seizure. I'll forget where I set that scar down, the light white one that used to be in the back of my mind.
Congratulations on your new, and well deserved life.
ReplyDeleteMay all of your dreams come true.
Hats off and kudos to your spouse too.
it's strange to let a part of yourself go. Good parts and bad parts. You don't realize how all-encompassing that part was.
ReplyDeleteIt's strange that sometimes you have to grieve those little white scars, because part of grieving is, oddly, celebrating.
Lora is correct.
ReplyDeleteMy divorce found me with two little girls in my custody, and mom with another man.
Up and down our lengthy driveway, I plunged metal hangers into the soil upside down. Attached to base of each hanger were balloons----black balloons with white ships passing each other perilously close.
The top said "HAPPY DIVORCE!"
I can't tell you how thrilling it was to "celebrate" as Lora states, as each custody exchange every 5 days or so, staring at myriad black balloons celebrating two ships parting in the night.
To catch a monkey for the zoo, a banana is placed in a gourd. It will easily fit in the hole, but when the monkey grabs it, his hand and banana haven't enough room to get both out.
By not releasing the prized banana, the monkey becomes prisoner in a zoo.
Don't let life monkey up your zoo and make a prisoner of you.
Let go.....and celebrate if you can find balloons.
Blowing bubbles is not a bad option if you have young kiddos.
Even if you don't!
Success is coming your way; enjoy!
Hmmm, I came to this post 'cause I wasn't sure how to respond to your Mother's Day post. Alas, I'm at the same loss. I'm actually a little comforted to hear of your troubles. My girlfriend has thyroid problems complicated by Lupus. She's on dialysis and needs a kidney transplant. I can't remember the last time I felt peace of mind over her condition and I don't really talk about it with anyone because my worry makes them uncomfortable. It's nice to hear someone's honest concerns laid out like this. Makes me feel less alone in some ironic way. I truly hope everything works out for you.
ReplyDeleteCarlos
Oh, yeah and my dad's an AA man too:)
Karin, I loved reading this. Partly because of my own epilepsy and I understand your struggle but also because it gives me hope for when I decide to have children of my own... Its also great to here about a nuerologist that is supportive, its hard to find and rare. Congrats to 2 years seizure free, I am going on 3 years myself, it is an awesome feeling.
ReplyDelete3 years! That's outstanding!!! How'd you pull off 3 years? Meds? Lifestyle stuff or both? Jaime, your profile won't let me view a blog or any info or list an email?
ReplyDelete