Tag Archives: Epilepsy Therapy Project

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Sorting it out; a year later

A year ago I sat in front of this computer in complete anger and frustration. That’s when the seizures returned and I started the mad science lesson with medicine that really isn’t quite over just yet. A year ago I was mad at epilepsy and I was mad at brain injury and I was mad that they were messing with me again. Yes, I’m a control freak. I’ll admit it. Guess what? I can’t shake my finger at my own brain and tell it to shape up. Well, I can, but it doesn’t do any good.  I needed some time to release the anger and move on to acceptance before I could start working towards healing again. In so many ways that seems like yesterday and it seems like an entire lifetime ago. In all honestly, I’m not completely over my anger, I’ve just refocused that anger into something more worthwhile than self-destruction.

I have to give props to my family who put up with the likes of attitudes out of me of the last year that I probably would not believe I actually displayed. People who have never had to take drugs for your brain may never understand what it feels like to look in the mirror and not recognize the face, to answer a question and yet not understand your own the response, or to find yourself lost in the city you have called home for 35 years. I’m dealing with it all. I pound it all out in the pavement every week.

There’s one thing that I had hoped would come back over the last year, and it hasn’t. In fact, it has progressively gotten worse. I’m not so much mad, it just makes me sad. I lost a great deal of my ability to really express myself after my brain injury. I know…many of you may disagree, but Johnny, or my Mom or Sharon, (and they know it doesn’t hurt my feelings to be honest about it either) will agree with me on this point. They know. I lost the ability to verbally express myself, yet I found I could express myself through writing.  My blog was such a source of comfort and release for me.  But my new medicine has….well…I can’t find the words for it…now even my written words are a lot slower, or just not there at all. So now everything I feel, and experience stays pretty much bottled up inside me but is swelling in every direction. But I can’t comprehend the swells or begin to let the swells overflow onto paper, so the foam continues to bubble up. I’m not really mad about it anymore, maybe frustrated, maybe annoyed. The trade-off is that this medicine is keeping the seizures away. Seems like a small price to pay for life, right. I’m a mom, seizure free is my goal, I have to accept swelling foamy bubbles not matter how much they confuse me.

So, I’ll keep refocusing my ______ into something more worthwhile. Please don’t stop reading my blog just because I’m not posting as often, it’s just because I can’t figure out how to say what’s on my mind. I’m still busy though, If you haven’t already heard about my worthwhile venture…click the link below. I gotta do something to find a better drug than this one…this is the best way I know to do that!  http://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.251389979

Good thing there is a lot of pavement left in Huntersville and a lot of miles left on my shoes. I tend to have a lot of energy to burn, for good reason. Maybe one day I can explain.

Copyright © Gatewood Campbell, July 2012

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Shaken, Not Stirred

Shaken, Not Stirred

Philadelphia Half Marathon 11.18.12

Life is always more fun with a friend, so shouldn’t we all surround ourselves with a bunch of great friends?! I’m feeling like the luckiest girl in the world to be surrounded by a dedicated group of friends who are committed to Team Shaken, Not Stirred! We think big and Team Shaken, Not Stirred has set our sights on raising $10,000 for the Epilepsy Therapy Project! We need your help to make that happen! If you want to know why this is important, keep reading more of my blog. If you want to learn more about the Epilepsy Therapy Project visit www.Epilepsy.com.

Donating to ETP and supporting Shaken, Not Stirred is super simple, just click this link https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/team.do?participationRef=3917.0.251389978 and you can select to sponsor any runner or make a general donation to sponsor the team.

Thank you for taking the time to read about my journey and more importantly for supporting  Team Shaken, Not Stirred! 

Gatewood Campbell

 

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Finally Running For Me

Shaken, Not Stirred!

 2012 TEAM Epilepsy Therapy Project 

Philadelphia Half Marathon 11.18.12

I used to run because my life felt like it was spinning out of control and I needed an escape. Now I’m running because I will not allow my life to spin anymore. I was shaken, and now I will not be stirred!

I was diagnosed with Epilepsy in 2005 caused by a Mild Traumatic Brain Injury earlier that year. I was only 32 years old, married ten years, with two sons, ages 7 and 2, and I was working full time. Our world was rocked in ways we could not have predicted. Seven years later, my fingertips can still recall the sharpness of the eleven life changing stitches hidden by my hair. I sat in a staff meeting unable to comprehend anything that was being said and worried that my life would never be the same. I was partially correct. I was definitely shaken!

I am still a wife and I am still a mom. I am no longer employed but instead focus my time and attention with those that I love. My days are filled with my family, including my 96 year old grandmother, with whom I spend several days each week helping age gracefully, and ensuring she has her afternoon cocktail when she chooses (a Martini, of course). I have been seen by more doctors than I can count on my extremities, been connected to enough wires to rewire our home three times over and weaned on and off drugs more times than the Octomom weaned children off bottles.  After my initial diagnosis, months of cognitive rehabilitation and some difficult trial and error with medicine, we eventually found the right concoction. With the exception of a few minor adjustments I was fortunate to have about four years with very few problems. For a while, I was not shaken and not stirred.

My world started spinning again last spring when I began having breakthrough seizures. It took me several weeks, and several seizures, to realize what was happening. I had become so accustomed to having controlled epilepsy, it never occurred to me that the day would come that medicine would fail to stop my seizures. I have tried four new drugs, all of which have serious side effects. We settled on the one with the least offensive side effects that still effectively controls seizures. I’m learning to grow comfortable with the fact that treating epilepsy will affect many parts of my daily life and it’s important that I remain vigilant. I have been shaken, and I have realized some valuable lessons.

Epilepsy is scary and confusing. Nearly 3 million Americans suffer from seizures, yet most people don’t even know the simple first aid steps to help a person having a seizure. I am blessed to be among those with epilepsy that can be controlled with drugs. I can help those that are not able to speak up; for the exhausted parents tending to their young child stricken with epilepsy and the variety of complications it brings, for the single adult trying to manage epilepsy and a job but unable to drive a car, for the teenager afraid the next seizure will happen in the school cafeteria or in English class, or for the young mom who just wants family life to be normal again. I am an advocate for epilepsy.

Combining my epilepsy advocacy and my passion for the pavement, I have formed Team Shaken, Not Stirred! We are running the Philadelphia Half Marathon on November 18th to benefit the Epilepsy Therapy Project! Seven of my running buddies have joined Shaken, Not Stirred and together we are setting big goals to raise big money and big awareness for the Epilepsy Therapy Project!

Please join me in this very personal labor of love by making a donation to sponsor me or to sponsor Team Shaken, Not Stirred. I am still in the process of changing drugs now, but that is not going to change my focus. While I am training for this race I will be in our community sharing epilepsy education and awareness. Change will happen when people are aware and I am certainly willing to speak up.

To donate (just like my children already have)  just click this link or copy it to your browser and click the “Sponsor Me” icon. https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.251389979 .

I’m deeply grateful to my family and countless friends who have given me support in so many ways and especially this last year. Thank you for loving me when it has been hard to love me, for holding my hand when it would have been easier to let go and for listening when I didn’t make sense.  Thank you for letting me know it’s ok to be me even when I’m still not sure who I am. Most of all, thank you for giving me hope for an easier tomorrow.  A bold new journey is beginning and I’m thankful to be Shaken, Not Stirred!

Cheers!

Gatewood

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Shaken, Not Stirred

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