Tag Archives: Medicine

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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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Fear NOT the Change

Several months ago I wrote about fear and why we have it, why we need it, and what good it serves. Today I’m facing fear again and it leads me back to the same questions.

Once a week I sit down with a ziplock bag full of medicine, my green seven day pill box and a pill splitter. This morning I dumped out the bag of bottles and looked at the notes I scribbled months ago during a conversation with the doctor.  I knew the date was coming and it made me sick to my stomach to even think about it.  After four months of stepping down dosage of my main anti-seizure med and stepping up a new med, today starts the last phase of the weaning process. I will take a minimum dose of the medicine that sustained me for the last 6 years and the highest dose of the new delight (I nicknamed it that to convince myself that it’s fun). It raises so many questions when forced to depend on something new. Though I have been very slowly raising the strength of the new drug while even more slowly decreasing the old, fear of change remains. Will this work?

So when faced with fear I remind myself to turn more directly and look to my Creator, the One who molded and shaped me in His own image. I must trust Him to see me through this fear-filled time and carry me safely to my next great adventure.

Copyright © Gatewood Campbell, May 2012

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Pressing On Through Frustration

I try really hard not to complain about my epilepsy, my brain injury and the complicated side effects of the five medications that I take everyday, but it is frustrating. It’s frustrating when I could depend on myself in the past and I can’t anymore. There is just so much that is different.

Last week I completely freaked out in my weight class when the instructor asked me to count how many people were there. I have trouble counting groups of anything because I can’t figure out how to group things in an order so that I will know what has been counted and what has not been counted. Short of asking everyone to stand up and then sit down after I point to them I was literally at a loss for what to do. I just tried to count the mats on the floor and then I added a few for good measure. I walked out of class wondering how I had turned into someone who is afraid to silently count people who aren’t even looking or talking to me. Bizarre.

I miss the human connection that I used to have. Sometimes it can be so hard. Conversations can be so strained and down right exhausting. My mind is slow and my speech is even slower. When I try to speak, the words don’t sound right coming out of my mouth so I repeat them. They still don’t sound right. So I slow my speech to pay attention to everything I’m saying, but they still sound wrong, so I repeat them again, and then I sound ridiculous.  Then I’m embarrassed and I quit trying. Sometimes I don’t understand what people are talking about so I can’t even enter the conversation. Years ago I could have.  Now I just stand silent.

It feels like forever since I’ve felt like myself. I’m not sure I know who that is anymore. When I make mistakes is it because I’m just getting a little older and trying to multi task too much or is it because of my brain injury and the side effects of the epilepsy medicine? Can I drop just one medicine that causes the worst side effects or is the risk of seizure too great? A seizure could be fatal. The risk is too great. I have to press on through the frustration.

I’m still learning. I’m still growing. I’m still trying to embrace my new me, my new world and my new normal. I’m trying really hard to like it. Some days are easier than others. Today was not an easy day.

Copyright © Gatewood Campbell, December 2011

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Trash to Treasure and Raising Awareness

November is Epilepsy Awareness Month. My family and I are wearing purple ribbons everyday to raise awareness. We invite our friends to share awareness by wearing ribbons and telling others why you are putting on purple this month!  Awareness begins with sharing and I’m sharing my own story of Epilepsy.

My memories until 2005 are pretty clear. After that, the memories fade for a few years, and then pick back up somewhere in 2008. I still fight back the tears and anger when I think about the years of my children’s lives where I was physically present, but mentally absent. I was robbed of fully participating in some of the best years of their childhood. My career ended when I thought it was just beginning. A Mild Traumatic Brain Injury in 2005 led to Epilepsy and my world was rocked. I wasn’t shattered beyond repair, but I was thrown into a world I did not know existed and was transplanted into a body and a mind that I did not recognize. Each day is a lesson in both patience and perseverance with myself. I’m trying to embrace the changes that life has brought me, accept the reality of my brain injury and learn to live with Epilepsy.

It was a simple errand. I needed to price trashcans for an upcoming event where I worked. I went to a local store. I remember walking in the store and turning left past the cash registers and then hanging a right between clothing and cards. Then I remember looking into bright lights, feeling plastic and air on my face, hearing strange voices rattling off medical jargon and a lot of loud beeps. I saw scissors cutting the left sleeve of my coat and sweater. I tried to move my arm away from the scissors but my arm was stuck. I tried to raise my head and look around but my head wouldn’t move. I remember the fear I felt when I realized I was in an ambulance and strapped to a gurney. We will never know exactly what happened that day. Someone found me on the trashcan aisle. There were no witnesses to tell us why I ended up on the ground with a gash bleeding on the side of my head.

I spent the next two months being chauffeured to every specialist imaginable but there seemed to be no explanation for my accident. My blood tests were good, X Rays were good, MRIs were good, MRAs were good, EEGs were good, EKGs were good and tilt table tests were good. With no obvious illness or condition, the doctors released me to drive and resume my life. As weeks passed and I attempted to go about my normal routines I quickly realized that nothing was normal. I couldn’t remember my address, my phone number or my birthday. I couldn’t remember where my children were and I couldn’t remember where I was supposed to be. I couldn’t even recall the names of my own family members. Doctors assured me that all their tests showed I was fine and they expected a full recovery. I knew I was not fine.

Six months later I was staring into bright lights again. This time I was on the floor of a children’s store in the mall. My head felt like hammers were hitting it, my shoulder ached and my tongue felt like someone had stabbed it with a butcher’s knife. A woman’s face was above me and she told me help was coming and that I would be okay. She said my husband was on his way. I remember screaming for my 2 year old son. She pointed to the back of the store where customers had occupied him with toys. When I asked what happened, she said I had a seizure and she had witnessed everything.

My Neurologist confirmed that I had Post Traumatic Epilepsy. I spent another six months in the passenger seat being chauffeured around town, dependent upon friends and family to help maintain some sense of normal for my children. After several trials of medications we finally found one with manageable side effects. I went through months of speech and cognitive therapy to learn new coping strategies for my deficiencies.

My life changed forever in 2005. I fought hard to regain what was lost but I had to face the reality of the long-term injuries I sustained. I left my career in 2007 to focus on my own physical and mental health and on my family. I’ve been on a journey of self discovery while learning to cope differently in a world that expects me to be the same. The shell of my body remains the same but my inner workings have been overhauled. I’m working to fight my constant fears of another seizure. I’m learning to accept the rest of my life on medication and hoping that the side effects won’t rob anymore of my time. I’m trying to make Epilepsy understood and accepted among people and a world that does not understand and does not accept it. I’m also learning that when I’m brave enough to share my story there are people who want to understand and who want to raise awareness.

I have a brain injury and I have Epilepsy, but they do not have me. I wake up each day and make a conscious decision to embrace change, accept a brain injury, live with epilepsy and thrive in my own skin. My journey began with a trashcan and I’m determined to turn it into treasure.

Copyright © Gatewood Campbell, November 2011

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God Never Wastes a Hurt

God never wastes a hurt, God wants to use you. In the back of my Bible I have random quotes and thoughts that I have heard over the years. I’m not sure where I was when I heard this, but I’m certain that God prompted me to write it down. I’m clinging to this now and trusting that there has to be something big in my future.

I’m not mad anymore. I’m tired and frustrated. I’m frustrated with the reality that Epilepsy has no cure and no perfect medicine. I remember when I was little and we would go to the Davidson Clinic to see Dr. Williams. I used to ask my parents why doctors “practiced medicine”. That indicated to me that it was not yet perfected and I didn’t understand letting someone who is still practicing something stick me with needles and prescribe drugs to me. Now I understand why doctors still “practice” medicine. I was right all along; medicine is not yet perfected. I understand it, but truly I would prefer that someone other than me serve as the guinea pig.

Apparently I make a good study in medicine. Lord help me, I surely hope THAT is not the big purpose that God has for me! You know when you read the labels on medicine and it says “a small number of patients may experience rare and unusual side effects such as…”, yes, well I tend to fall into that category. I guess everyone falls into some statistic and at least I fall into the rare and unusual category. I’ve always thought I was a kind of stand out person anyway. I majored in Psychology in college, it was not my intention to become a study in psychology. Nevertheless, here I am.

The good news is that the seizures have stopped. The not so good news is that as I slowly increase the new medicine I rapidly turn into someone I do not even recognize. It’s really quite possible that Webster’s 2012 newest addition will read: Mood Swing – definition Gatewood Campbell. I asked Johnny if I could hang a sign around my neck that reads “Heavily medicated. Not responsible for anything that is said or done.”  This new medicine turned me into someone I don’t know nor can I control. After several days of uncontrollable sobbing and screaming at strangers in parking lots for their inability to drive responsibly (or whatever else was annoying me at the time) I decided it was best that I remove myself from the outside for a bit. It seemed that was in my best interest as well as the best interest of the state of North Carolina.

Epilepsy is all about misfires in the brain. In order to treat it, you have to corral the misfires. Let’s just say that I’ve got some wanderers that clearly do not want to cooperate. My doctor says that the side effects I am experiencing are rare and unusual. I really should have expected that by now. Although I am more than ready to throw in the towel, quitting is not an option. I’m still trying to convince myself that a seizure would be worse than how I feel on this medicine. The jury is still out on that one for now.

So, here we go again. In order to isolate the symptoms I’m having, we backed off the new meds for a week and in a few days I will try them again. My dosing schedule is about as complex and confusing as the back to school forms for the boys. I hope I’m more successful at my dosing than I was at communicating how Hunter was supposed to get home from school on the first day. Oh well, he eventually made it home safely regardless of the detours. I certainly pray that the outcome of my detour will end favorably as well.

I’m forever thankful for the generous help and support of our friends and family who continue to rally around us. I have no words to express the depth of gratitude I have for what you have given our family. From the bottom of my heart, THANK YOU!

God never wastes a hurt, God wants to use me. I’m sure it is for more than a footnote to some pharmaceutical company’s research, so until then I’m trying to put aside my frustration and hang on to see the bigger picture.

Copyright © Gatewood Campbell, August 2011