When I was pregnant I read “What to Expect When You’re Expecting”. People offered advice, whether I wanted it or not. Guess what? There isn’t a book called “What to Expect When You Have Epilepsy”. That might have been helpful for me, or maybe not. It might have scared me, or maybe I would have been better prepared.
I was cruising along just fine when epilepsy hit me right on target (pun intended) and distracted me from my very organized, multitasked and planned out life. For 7 years I’ve been adjusting to the changes epilepsy brought to my life. The first couple of years certainly weren’t easy breezy, but it’s all kind of a big blur to me now. I remember lots of doctors, pills, post it notes and catching rides with people. After I realized I couldn’t juggle work and epilepsy, and left the 9 to never-ending grind, I had very few problems for about 4 years. I had regular checkups with my neurologist and just routine blood work to make sure my medication levels were where they needed to be. I felt good. I couldn’t multitask but I could plan and organize enough again. Life was good.
Last Spring things slowly began to change and it caught me off guard. I was not prepared for things to change. My medicine quit working and I was having breakthrough seizures. The last year has been a learning experience. Those 4 good years gave me a false security that I had this thing licked. Don’t get me wrong, I believe I can have this thing licked, but I’m not there yet. Over the last year I have spent every month weaning on or off multiple anti-seizure meds in search of the lesser of the evils. It’s the great hunt for seizure control versus manageable side effects. Ask my family, it’s a pleasure to experience. One did a great job controlling the seizures but made me want to crawl out of my skin and I couldn’t sleep at all. Another controlled seizures really well, but it caused me to pretty much wake up without any patience or filter for appropriate speech (and pretty much tell off anyone I saw). That was a really bad bad medicine. Another one made me slur my speech, delay my word retrieval, limit concentration and pretty much screw up all of my processing skills. I’m still suffering the effects of that one. Another one gave me the shakes. My current drug of choice upsets my stomach and I have to time my meals exactly to limit the nausea. Some days I can’t fight the nausea, even with food, and I just have to stay in bed. The medicine makes me sleepy and I need a nap to get through each day. I get dizzy moving from a seated position to a standing position. My gums bleed and stay swollen and are sometimes so painful it’s hard to eat. I have lost some taste and appetite. My hair thins a little more each day. The blotchy deep purple in my hands and feet is another nice free bonus I guess. And this is the medicine I chose, because the others were worse.
I am not complaining, I am explaining. I count myself among the fortunate patients with epilepsy. Mine is controlled with medication. Although, clearly it’s not the perfect medication. Epilepsy is a disorder in my brain but in order for it to be controlled, I basically have to surrender the rest of my body to medication. Well, that’s just not good enough for me, not long-term anyway. I need more options, we all need more options and I need to find a way to make that happen. I’ve spent the last year researching and networking with others in the epilepsy community and I learned about The Epilepsy Therapy Project. I am thrilled to combine my love of running with the opportunity to raise money for a deeply personal cause.
I have formed Team SHAKEN, NOT STIRRED to run the Philadelphia Half Marathon on Sunday, November 18th and raise $3,000 for The Epilepsy Therapy Project! I already have one recruit! Sharon McGowan has signed on to Shaken, Not Stirred, which seems appropriate since she is one of the few people who knew me well before all this and has been by my side through it all!
Click this link to visit our own TEAM SHAKEN, NOT STIRRED page to donate, to join our team and to learn more about The Epilepsy Therapy Project. https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/team.do?participationRef=3917.0.251389978
I hope to use my involvement with this project to spread awareness and education about epilepsy while I prepare for the race. I’m just beginning this project and my brain is still fried, though over-easy, from the variety of drugs I have been on, and I’m still weaning off another medicine now. There will be lots more information and updates to come. This is a very exciting opportunity for our family to get involved with the epilepsy community. My hope is that something I do will help someone else be better prepared or perhaps need not be prepared at all.
Copyright © Gatewood Campbell, May 2012