Tag Archives: Medicine

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Here We Go Again, with a Little Less Energy but a Little More Hope

No one told me there is no quick fix. Why don’t they tell you that? I have never been much of a patient person. Don’t ask when I can drive again. I quit counting. I really don’t know. There is still no cure for this cursed thing called epilepsy. This morning I read about a child in Charlotte who is literally dying from her seizures, having tried 19 medicines a day and nothing is helping. When is enough enough for someone to realize this is serious stuff? People are suffering! Epilepsy is serious business and it changes people’s lives every single day.

I’ve been on a new path for several months now. I’m seeing a new specialist at Duke, thanks to the handiwork of my Mom. I had some tests done that showed I was normal…or something like that. Who says that to someone with epilepsy? So in lieu of further lengthy and highly unappealing testing I opted to change meds again. Frankly, I’m a wimp and the medicine seemed easier. I figured after a dirty dozen what’s with another one, right? The doctor said if things are going ok and this is the person we know then we can keep things the same. With resounding force I’m fairly certain Johnny, my Mother and I nearly knocked him over when we said “No, this medicine is not OK.” I will admit, I knew it was bad but when I saw Mom and Johnny look at the doctor and tell him this is not the person we know, it made me so mad that this disorder continues to rob me of so much. And it robs me of things that I don’t even realize! Johnny will say that I’m repeating myself, but I’m certain I’m not, so I have to continue my point because I haven’t made it yet, so I continue repeating myself, and he continues telling me I’m repeating myself…thus the rinse and repeat cycle goes on endlessly. For those that know me well, you can picture me rolling my eyes here right?

So, here we are, one week into a five week cycle of changing meds. The promising thing is that I am moving to a BRAND name med. No more generic crap. We are going for gold here. We read through all my records and in the past, this medicine worked. Granted it was pre-40, so it could be different, but it is promising. It only seemed to stop working when we moved to generic. Lesson #123 at the pharmacy, always double check your prescription because they don’t always fill what the doctor writes. “Thanks, actually the doctor wrote that for the brand name NOT the generic, I’ll wait while you fill it as written.” Lesson #124 if you have a weird name they always remember you at the pharmacy and sometimes that isn’t good. Lesson #125 looking for a new pharmacy.

I’m glad to be going off the medicine that is widely known to turn you into a dope head. I simply forgot that I was going onto a medicine that keeps you in a fog for the 12 hours that you are able to stay awake during the day. I’m thankful for the internet world of epilepsy families that are always available to give advice to fight the side effects that come along with this. They have been through everything before and know what is around every corner and are so helpful with every question no matter how crazy! No one prepares you for this. If I can find a beekeeper with caffeine infused honey I think I kill two birds with one stone!

I dreamed the other night that I snuck out and took the car out and went shopping. I don’t think I even bought anything. I just went where ever I wanted. People are so gracious to offer. It isn’t about needing to go somewhere, it is about the ability to go somewhere, gripping the steering wheel in my hand. Grabbing the gear shift and throwing it into drive and knowing where I’m going without telling someone, planning it out days in advance, working out the timing and having it take four times as long as it normally would. For us, it is about maintaining some level of control in our lives. That is why driving is such a huge issue…because everything else feels so out of our control.

My patience was left somewhere, maybe on a sidewalk, a bus, or an emergency room. I think I have lost my sense of humor… perhaps this week when the boys dropped me off at Target to grab four, only four things and we ended up with a dead battery in the car. Really, I should know better. We all just shook our heads at that because we did know better. We should have gone to Walmart. I’m trying to keep my family fed, keep our house clean and keep them in clean clothes. I’m trying to make sure they get where they need to be and with the constant help of some dedicated friends that is happening. The kids are not missing out and that is the most important thing to me. I’m so SO thankful for that!

The bonds of my friendships have become priceless. There are people that I depend on when I am at my limit and need to vent because I can’t take one more minute of the unexpected. They will listen to me cry, they will carpool me around town or if Justin is at work, Johnny is sick and Hunter has to be at ball practice, these friends will drop what they are doing and come to my rescue. When Mom was in chemo and I couldn’t get to Mom, they helped make sure Mom was ok. They have been in this journey for years now. They didn’t quit on us. Recently we lost a very special friend. He was dedicated to our entire family, four generations! That presence will never be filled. His laughter will never be replaced by another soul. What he leaves is a legacy with which we learn; spread ourselves and share ourselves. Give what we can of ourselves. Be open to listening. Be open to seeing what is around you and be open to helping those around you. He invested in four generations of my family and his impact is deep rooted. This is the kind of friendship that makes me smile, and makes me shed a tear or two. Did he tell me there was no quick fix and I missed that?

Copyright © Gatewood Campbell, April 2015

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Just a Little Bit Longer

“How much longer?”

Everyone is asking. Seems like it has flown by to everyone else, and in many ways it has. It seems like forever to me, and to others it has felt like that as well. How much longer until I can get behind the wheel? I have 2 more months. I am so tired, and embarrassed of having to ask people to do something for me. This is so difficult for me. Boy am I really being refined there!

Truth is, the closer it gets the more anxious I am. Each day I am more fearful that I am going to have another grand mal seizure and lose consciousness, thus starting the entire process over again. I am afraid that the black hole that this new medicine has created in my brain will make me too much of a lunatic to drive with any sense. Will I remember how to drive? Or will I more likely resemble an inexperienced 15 year old with a permit? Gasp, been there, doing that….deep breath in through the nose….out slowly through the mouth…and repeat until you reach your destination. 

I’m surrounded by people, loving family and friends, yet epilepsy and the medication we have to take, force us into an obscure place that others cannot understand. So often it isn’t epilepsy that causes the problem, it is the medicine that is the evil. It takes away the person that we once knew when we looked in the mirror. I know that I do not make coffee in the laundry room, yet I found myself walking into the laundry room with coffee and filter in hand looking for the coffee maker. On more than one occasion I have looked at my 10 year old washer and dryer not knowing what to do with the knobs to make them start. I was at the gym and I forgot how to do a sit up. I can’t even explain that one. I just knew from how my body felt that I was doing it incorrectly. I couldn’t form a correct sit up. Simple facts that I have always known and been able to recall are just gone. I hope I can run again without being dizzy. Conversation is so hard. My black box brain is so empty. The words come so slowly, each word is so delicate and so cautious. I’m confused by the smallest challenges. My fourth grader has long surpassed what I can help him with in his school work. I have a college degree and I can’t help him with his homework. It is degrading. Parts of who I was… vanished. So who am I going to become? What am I going to do? Change is hard. No one likes change. This medicine is good; it is keeping me from having seizures. I have to remember that.

This has been a hard winter on many levels. It was so unexpected. I’m not used to dealing with the new side effects of this person that has been created and working so hard to dig up the layers beneath to find me. I want to be the mom that I used to be for my children and the wife that I used to be. I want to be the friend that I used to be. I want to run like I used to. I want to be able to work out like I used to.  I want to juggle those things and more. I want to give as much as I receive. This spot, this place, it is so uncomfortable for me.

On Sunday these words from Always by Kristian Stanfill spoke to my heart. “Oh my God, He will not delay, My refuge and strength always. I will not fear, His promise is true. My God will come through always. Always.”

A few weeks ago I was cleaning out some things and I stumbled on 3  greeting cards that I had tucked away for safe keeping some years ago. They were mixed in with some other things so obviously they were something of meaning so I pulled them out to read. One of them was from my Grandmother. All it said on the inside was

“Peace!

         Emmer”

There was no date. The card had a little bird on the front so it didn’t indicate a holiday, but she wouldn’t have wasted money on a holiday card anyway. She likely just sent me a card during some difficult time. I could see her gentle teary eyes and feel her soft arms wrapped around me. I needed that little hug.

I know God will not delay. I know He is my strength. I know His promises are true and I know He is all I need. I know He hears me when I am anxious, He knows my fears before I know them and I know His ways are better than my own. I know that, I know that, I know that. My God will come through always.

This journey has been a doozie. How much longer is really anyone’s guess, but I am ready for this roller coaster to come to a safe and complete stop. Oh yeah, I can’t ride roller coasters. I forgot.

© Copyright Gatewood Campbell, May 2014

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I Really Am Counting

If I am being totally honest, I have been mentally waiting for today, the halfway mark, so I can begin the downward ride on this rollercoaster. I have 3 months left until I gain my wings again. Every 3 or 4 nights I have this recurring dream that I take off in the car because I have forgotten that I’m not supposed to drive. Then every once in a while I have a dream that I get in the car to drive and I have forgotten how to drive. I also dream that I have forgotten how to get anywhere because I don’t pay attention to where I am going because I’m not driving.

Oh the dreams I have on these new meds. That is a whole Lifetime Series! They are crazy dreams, and they are so real that I confuse my dreams from reality. I wouldn’t even call it a circus. It’s more like being on steroids while riding on a raft flowing upstream with the Village People through an international bazaar in Arizona. Nothing really fits, if you get my point. Every morning it takes me about 30 minutes to come back to earth. But, the meds seem to be working. I haven’t had any major seizures. The physical side effects are minimal and I think I am coping okay with the mental side effects (Johnny is the real judge of that). I still have several more weeks until I am completely off the old and on the new and then it takes a few weeks of the new magic juice to really know if we have the winner, but all signs are good.

I’ve been home for 4 months now. It feels like a year has passed. I feel like I should have accomplished more than just laundry. My husband tells me it’s ok. I’m going with his vote. I’ve learned to navigate the bus system. I love the freedom that gives me. I don’t have to try to figure out multiple schedules or make a bunch of phone calls. The biggest change on this med is that I really have to break things down into very VERY simple terms. It gets difficult when things take more than 3 or so steps. Trying to arrange getting the kids somewhere for a specific time can be the most confusing activity for me. Getting myself a ride somewhere and figuring out where they are going too can do me in. If I can just hop on the bus and skip calling around and organizing rides, it is a breeze. I love that!

We are so fortunate to live in town, close to many things, close to friends and close to our family. People have been so gracious. We have several friends who give rides to the boys every single week to various things, and we are so thankful. The cars just show up and the kids just head out the door and it has become routine. These are gifts for which we will never be able to repay. Kudos to my Mom who takes me literally everywhere!

I’m doing okay. I love my God who gives me each day. I love my husband and my family and my dog. I love my friends and I’m thankful for the help we have had. We are truly blessed. I think God chose the strongest rib from Adam when He created Eve, because on whole, women are pretty strong and determined to get through whatever comes our way. Can I get an Amen?

Thank you for all of the love and support you have been to our family. It takes a village (not the Village People) to make this family operate and without your help it would be a circus! So, for now, looking forward to another successful 3 months! I will resume quietly counting.

© Copyright Gatewood Campbell, April 2014

 

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How Did I Get Here?

I blinked. My world shook. I looked into the eyes of a stranger and asked “How did I get here?”

Epilepsy. It came into my life from a fall nearly 9 years ago. One might think I would be used to it by now. Not so. I’m thankful for the quieter years when my seizures were, for the most part, controlled by medication. I lived in a world shaded from the truth that epilepsy changes your life forever. I’m glad I had those years in the shade, but I have walked out into the sun now and I do not like it.

In the last two months I have had two grand mal seizures. Both times I was alone on a sidewalk. The first time I was caught off guard and had no time to react and have the scars to prove it. The second time I had about 10 seconds to know I was in bad trouble. All I could think was SAVE THE HEAD and I moved to the grass and dropped to my hands and knees. I never want a staple gun smashed into my head ever again. I successfully saved my head. But I found myself looking into the eyes of a stranger once again and asking “How did I get here?” Again, another gentle voice told me I had a seizure. Best I recall I thought something like, oh @&^%$#. I don’t remember much after that. It is weird that each time I have a brief memory with an EMT and then I lose an hour or so and pick back up when things are calmer and I’m settled in the ER. Settled in the ER, now that is an oxymoron if ever there was one!

It is all overwhelming. I just didn’t realize how my life would change. I didn’t realize how the lives of my family would have to change so much. I don’t know how to adjust so quickly. I want to go back into the happy shade of controlled seizures. I don’t like the sunny side of seizures at all. After the first seizure I was counting down until I could drive again. I just thought it was a fluke and I didn’t expect another one. After the second seizure, I realized it was more than a fluke. Now we are dealing with more than just small breakthrough seizures where I maintain consciousness. The driving clock reset yet again. I quit counting down. It feels so far in the distance.  I don’t worry about driving. I just want to be seizure free. You see, there is no cure for epilepsy. There is coping, by means of medication or surgery, but there is no cure. People with seizures, people with epilepsy; we face the dreaded “pre-existing condition” and the grind of brain changing chemicals everyday. This is my life, and 9 years later, I just NOW realize it.

I am thankful, don’t misunderstand. I am blessed in ways that can not be measured, but I live under some element of fear everyday. I have to think through where I am going and “what if?” I am just like everyone else and wish we knew that everything would be ok. That isn’t reality though. So I have to plan ahead. My husband needs to work nearby just in case that number he doesn’t know shows up on his cell phone and the caller says “Mr. Campbell?” He knows without the caller saying anything else this is not Publisher’s Clearing House calling. I don’t like that he gets those calls. I don’t like that when my son comes home and I’m not here, he instinctively texts us asking where we are. I don’t like that fear can transcend generations. I have watched the fear of my seizures pass through four generations of my family now. The fear makes me mad. Then I circle back around to being mad at epilepsy all over again. I see how people who don’t know much about epilepsy talk about it and it upsets me. I want to be understood. I want to educate them, but sometimes I get tired of trying to teach people to be accepting. Sometimes it is just easier to be quiet and hide.

I don’t know how I got here. I don’t know why I’m here. I don’t know when it will be better. I know I am not supposed to be afraid, but I am. I know I am not supposed to worry, but I do. I know I am not supposed to ask why, but I do. Normal is such an abstract idea, I am not looking for normal. Furthermore I have had too many concussions to remember what our normal was. I just want to feel safe. I want to blink and for my world to never shake again. I want that for me and I want that for our family. Is that so wrong?

© Copyright Gatewood Campbell, January 2014

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Sometimes the Glass Really is Half Empty

I try, I really try to see every glass as half full, not half empty. A glass is round and when it is hit by something it bounces off in a completely different direction. It can’t be hit by the exact same thing in the exact same spot. So when I look at life as a glass half full, it is headed towards overflowing and by design it can not be penetrated. This keeps me moving forward, pressing on, determined not to be depleted or shattered.

But sometimes the water is full of air, full of bubbles that make it too cloudy to see through. Or the glass isn’t transparent so who would know if it really is half full or half empty? The glass can seem square shaped, making every pot shot bounce off and hit in the same spot repeatedly until it is broken. With a square glass holding cloudy water what do you do? If the glass isn’t transparent, you can’t press on enough to see through the glass, the battle is lost before it has begun.

Your normal is not my normal, or anyone else’s normal. Everyone has something unique that makes the definition of normal itself, unique. We each have something to conquer each day, something that has the ability and weight to sink us to depths that would drag a bobber to the bottom of the lake.

I have learned, well I am still learning, to live with epilepsy and a brain injury each day. I often wonder if it were just a brain injury, how would life be different? If it were just epilepsy, how would that be different? If my already injured brain weren’t dependent on medicine to limit seizures, what would be different? If I never had to go to Target that winter day in 2005, how would my life be different? Now, I know and I can list off in excess, the ways that my life has been enriched because of my circumstances. I will never ever deny the tremendous value of the experiences I have had or that my family has had due to my injuries. That walk in Target shaped my family into who we are today. There is much for which I am grateful and that enables me to see the glass half full.

Sometimes though, I just need to allow myself time to acknowledge there are consequences of my fall that just plain suck. I have yet to find a medicine, and I have certainly tried my fair share, that doesn’t have some side effect that over time becomes intolerable, either for me or for my family. I hate that I hate when the phone rings, because every nerve in my body flinches with fear because I’m about to be forced into a conversation that I did not initiate. I will be forced to try to decode my misfiring brain into words that may or may not communicate correctly. I will be asked questions that I need time to understand and to answer, yet the caller will expect quick responses, because that’s how a normal person responds. I hate that I cannot initiate a conversation of much merit because my brain is just a blank canvas without even a paintbrush. I enjoy watching my family laugh and scream on roller coasters, but I get tired of just walking from ride to ride and sitting at the end of the off ramp because I can’t ride with them. My family loves to watch a brilliant fireworks show, but I get bored holding my chin to my chest with my eyes closed. It’s frustrating to look in my closet and not understand how to put together a snazzy outfit that matches. (I’m so glad I have boys that aren’t dependent on female advice about fashion…I can not fathom the disastrous outfits that I would have put together for a girl.) It’s embarrassing to look at a teenage cashier and have to walk away leaving all my groceries on the conveyer belt because I’m confused by the sale price or the coupon or just the small talk they are genuinely trying to make with me. I feel horrible guilt when the boys’ teachers ask for volunteers and I don’t respond. I imagine them thinking “she doesn’t work, so she should have her hiney helping somewhere”. It’s embarrassing when I can’t understand the directions a 3rd grade teacher is giving for a game. It only gets worse when the kids try to explain and I still don’t understand. And my confidence hits rock bottom when the teacher tells the group of kids their leader has misguided them. When my son looks at his classmate and explains “she just doesn’t understand”, the fishing bobber has joined me at rock bottom. It’s humiliating to have to say no. I can not begin to put words to the demeaning feelings that overwhelm me when I have to say no to volunteering at my church. I, of all people know the need for volunteers and I should be first in line with a hand raised, but I can’t, I simply can’t. I know the need, but my role is as a seat filler now.

**Hold that thought….my phone alarm has just alerted me that it is time for a dose of medicine. If I hit snooze I may not remember to take my medicine later. I would like to continue with my train of thought, yet I am forced to stop….with a body dependent on a consistent dosing of medication that allows me to live my kind of normal. I can only hope to remember where I was in thought.**

Ok, I hope can resume regular programming now…

I share these things not because I am seeking sympathy. I don’t need sympathy because I know without a doubt that I have blessings that continually overflow. I share these things because sometimes I need to allow myself to vent and admit that there are some things that just suck. I have adapted. My entire family has adapted. That doesn’t mean that I have to like it all the time. My square glass has been leaking slowly for some time now. Maybe it finally shattered from relentless pot shots and the cloudy water has soaked my fingers and toes.

This season will pass and I will more fully accept and adapt to whatever circumstances come my way. The good news is that when a glass breaks, it is thrown away and replaced with a new one. We refill it with crystal clear water and the glass remains half full.

© Gatewood Campbell, August 2013