Overcoming obstacles with Optimism

Posts tagged ‘seizure medication’

Perspective of An Epileptic Growing Up

Middle School

                “I don’t know what’s wrong.  I just feel weird.  It just feels like I am in a commercial I have seen before. I know what’s going on around me.  I know everyone around me.  I have seen them all before.  I just can’t join into their conversations.  I just feel different, and then I count my fingers and pat my face.  Then I am tired.”

“An EEG…with all those cords???  You cannot be serious!  I can’t wear that to school!  Everyone’s going to laugh at me!  24 hours?  But I don’t want to.  Fine!  But, everyone is going to laugh and make fun of me.”

High School

                “Yeah, they’re still happening.  But please, don’t tell anyone.  Everyone already thinks I am weird when they see me count my fingers.”

“I don’t understand.  I felt fine, went to bed, and woke up in the doctor’s office.  How did I get there?  What’s going on with me?  A seizure….  No way!  But aren’t those where people just flop around.  I wasn’t doing that.  Was I???”

“What do you mean I can’t drive?  I just got my license!  Six months?  NO WAY!!  That is so not fair!  Why is this happening?”

College Life

                “What do you mean I can’t sleep in a loft bed in a dorm?  Seriously, I might have a seizure and fall out?  Stop worrying about me.  I mean, I am fine.  It’s no big deal.  I don’t even really notice it until the morning.”

“I know all these last medicines aren’t doing anything for me.  All right, fine but, this one makes me feel horrible.  I feel so groggy.  I feel sick to my stomach.  I feel like I can’t help but get fat.  Come on, why can’t we find one that works!  Why do you make me take medicine that totally is not helping?  They just make me feel worse.”

Early Adulthood

                “Okay, fine I had another seizure last night, but they aren’t that bad.  I just wake up totally sore.  No big deal.  Really.”

“Oh, dear God….  That was ME in this video tape?  Was that really me having a seizure?  No wonder I am so sore.  No wonder everyone has always been so scared.  Wow, I had no idea.  Gosh that looks horrible!”

“What are these red spots around my eyes?  Broken capillaries?  I had always thought I was so lucky having the seizures at night.  Now you are telling me I could have died from my own saliva?  I had no clue.  My seizures are getting worse I know.  Really seizures can kill a person?  Me?  Wow.  Okay, even I am a little scared now.”

“There is no way I am in Iowa!  I went to sleep in Virginia.  Oh my gosh that older girl is so cute!  Who is she?  What?  Seriously!!  She is mine?  How?  What has happened?  Status epilepticus?  Okay, please tell me again?  How did I get here?  How do seizures wipe away memories?”

“No medicine works.  I have a period of amnesia.  Now my short term memory is about gone.  I have to leave notes of whether or not I stepped outside to get the mail or I ran the dishwasher.  I just…I know it’s time.  I need the epilepsy surgery.  No medicine has worked.  I’ll be fine.  Seizures could quite possibly take my life.  The surgery could save it.”

“I remember the petit mal while in surgery.  I remember knowing I was going to have the tonic-clonic.  I remember the seizures. I remember knowing everything was not going to be all right.  I remember the surgery.  A stroke???”

Recent Years

                “The stroke was rough, but well worth it.  No more seizures!  Finally, what more could I want!?!”

Eight years, and no seizures.  I haven’t felt this good completely free of medicines since I was young.  Oh, I feel great!  I am so thankful!”

“Last thing I remember was I was sitting outside on the chair. Are my kids okay?  How and why did my seizures come back?  What can we do?”

“I can’t drive again???  What am I going to do?  How can I get my groceries?  How can I get my kids to the doctors if they get sick????  No one from church is able to take me to the appointments?  Really??  Most of my neighbors forget to ask me before they go to the store.  I guess I will have to ask them again.  I lost my license.  I have lost my independence. I can’t drive.  Six months.”

“Vimpat is amazing!  I have not felt any side effects.  I guess that was a benefit to being medicine free for so long.  They have had time to develop new anti-epilepsy drugs.”

“No, really I am doing great.  Besides that one blip in April, the seizures seem to be gone.  Of course I am still scared.  Nearly nine years seizure free.  Now they are back.  Seizures always have been my disease of waiting.  I will be okay though.  I always am.”

The Doctors, The Girl, The Vampires

I finally gave in and attempted to catch up to our pop culture.  I picked up the Twilight series by Stephenie Meyer.  I do not usually enjoy fantasy books.  I like books relative to a life I could experience no matter how unlikely.  Hoping I can spend an eternal life with a vampire husband hampers my suspension of disbelief.  That being said… I truly became engrossed in these books and was able to understand the draw at once.  It took me only a few days to read each book, but their storyline lingered in my mind.

Last week I went to the doctor.  I needed blood tests and was sent to a lab.   I used to be terrified of needles.  I would love to say I have always been unfazed by needles whether they were putting something into my blood or taking blood out, but my mom might open this blog post.  She would be all too eager to tell stories of the nurses chasing me around the waiting areas, so they could hold me down and give me immunizations.  Well, I mean really why sit still when I could watch those stoic adults chase me?  I do not know when it was that I became immune to the sight of a needle and the slight stab as it pushed through my skin.   But somehow, some way, I became completely accepting of the needles and the jobs they did. Maybe it was my weekly allergy shots growing up.  It could also have been the regular lab work as seizure medication was adjusted again and again.

On this day I was sent to the lab, there was a young girl sitting across from me.  I could tell she was a pro at having blood drawn.  Even the phlebotomist was impressed with how still she sat.  The girl knew the exact process that would occur as they prepared the needle then filled the vial.  This girl was an expert in an area so many adults fear.  It made me wonder why.  How long had she sat in chairs like these?  How many children become tougher than adults for many reasons we wish they could have never learned?  Was the particular girl like me and sent there regularly to check the levels of medication in her blood stream?  Did she have a condition I have never heard of nor would ever want to become an everyday household word in my home?  I hoped not, but her stillness and calmness made me feel a touch of sympathy and a lot of awe for her apparent bravery.  I could only hope they would give her a fun, entertaining Band-Aid of Hello Kitty or some super hero.  She was a super hero in my eyes.

The new doctor that had sent me to the lab on this particular day apparently is very thorough in her work.  She left no test unchecked.  My phlebotomist leaned over my paperwork and put label after label on collection vials.  The other phlebotomist went through three patients while mine was still marking, labeling, marking and labeling yet again.  As I sat there, my mind wandered to the book I was currently on, Eclipse.  The suspension of disbelief was suddenly becoming easier and easier.  I saw the vials and wondered if I should really lose that much blood in one sitting.  I thought of the vampires and their role in these books.  I looked at my friendly phlebotomist and attempted to listen to her easy chatter.

My phlebotomist that day probably felt ill-at-ease as I told her about the story of vampires and asked how much blood I could lose in one sitting.  I laughed lightly as I told her I had been reading this series as I waited for her to call my name.  Yet, she did not need to fear my response to those nine vials sitting in between us.  I was so experienced in this field I could point out the healthiest vein for her to use.  If it was not for the stroke leaving my left hand not quite as strong and steady, I could probably do this draw myself.  I did not gasp as I intently watched the needle pierce my skin.  I did not even appear to be counting along as I mentally counted down the vials left.  I remembered the awing peace and strength the little girl had displayed.  If at her age the discomfort could be masked why couldn’t mine?  Besides, I had a Hello Kitty kid Band-Aid sitting there just as I had requested.  I understood the joy a simple Band-Aid could offer by placing humor into an otherwise stressful day.  The doctor still would be able to run more tests.  The Twilight series would still run through my mind.  I gained peacefulness from children surrounding me.  And most importantly, I knew super heroes and unbelievable strength rarely remained within pages of a book.

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