Sometimes it’s not the seizures…

Living with epilepsy you can become overwhelmed as you deal with seizures and the lingering effects of them.  However, it’s not always difficulties from the seizures themselves that are cause for struggle.

Side effects of medications can cause many complications and struggles in daily living.  Sometimes it feels like I’m forced to decide which is the lesser of evils, dealing with seizures or dealing with the side effects of my medication?

This struggle has never been more apparent to me than the past six days.

On Wednesday April 11th I awoke with a sore throat.  That day I would be traveling to the Nebraska State Capitol in order to receive the Purple Day Proclamation from the Governor of Nebraska.  I also had to give a short speech about Purple Day, epilepsy and the proclamation.  A little sore throat was not going to stop me!  I did in fact attend, gave my speech and had my picture taken with the Governor:

However, in the following hours I noticed I was becoming more and more exhausted.  By evening it was apparent I was becoming sick.

By Thursday morning I awakened with an incredibly sore throat.  It felt as though I had burning coals in the back of my throat.  I couldn’t swallow anything without pain.  I was growing weaker by the minute and nothing seemed to help.

Friday morning, my birthday, I was getting worse.  My husband (who had the day off) made a doctor’s appointment for me.  The doctor did a strep test, which thankfully came back negative.  The downside was it meant what I have is some sort of virus.  That meant that they couldn’t give me any kind of medication, I would have to ride it out and let my body fight off whatever it was I had.

This is apparently a direct result of my Levetiracetam.  Among many other side effects, Levetiracetam is known to lower your immune system and can effect both your white blood cell count & red blood cell count.  Neither my husband nor my daughter caught whatever this virus is which also goes to show I have a lowered immune system.  To be honest all I can say is that this really sucks!

Our general practice doctor did tell me that along with my vitamin B6 I needed to add Vitamin D3 to help boost my immune system.  My hubby picked some up for me and I began taking it that day.

It’s funny though, everything I’ve been learning about Levetiracetam & it’s side effects (depleting B vitamins, depleting D vitamins, lowering immune system & blood counts) have all come from sources other than my neurologist.  My neuro hasn’t offered any information in regards to dealing with side effects since placing me on Levetiracetam.  Sometimes I think our general practice doctor knows more about epilepsy than my neurologist!  Frustrating, but I am thankful for my GP Doc! 

Finally after 4 days in bed I awoke this morning feeling better.  I’m still not at full strength, but I’m much better than I have been this past week.  My throat for the first time in nearly 6 days is mildly sore, a great improvement over the burning coals sensation.  I’m on the road to healing, but it’s taken much longer to fight off this virus than it ever did pre-Levetiracetam.

Cat

Why am I speaking out and being an advocate?

I know a lot of people in my life are wondering why I am being so outspoken about epilepsy.  It’s not normally in my nature to be vocal or put myself in the public eye.  Most of my life I’ve spent trying to blend into the crowd and “fly under the radar” so to speak.

I’ve thought about this and decided to express exactly why it is I am speaking out, publicly, about epilepsy.

First, I feel God is calling me to do this.  When I became a youth leader many years ago I didn’t do it on a whim, but rather because I felt a strong undeniable calling to youth ministry.  It was unlike anything I had ever felt before in my life.  When I began to feel the calling to speak out about epilepsy (before my diagnosis) it was the same strong undeniable calling.  I reminded God I’m not a good speaker, I’m timid/shy, I had no idea how to even get started with this undertaking.  Then He reminded me that He simply wanted me to accept His will for this season of my life and that by doing so He would open the doors, give me the voice, the opportunities and the words.

Second, after beginning to learn about epilepsy, how misunderstood it still is, how little public understands, the lack of funding /research, and how prevalent epilepsy is, it just seemed to be the right thing to do.

Third, I am also doing this for my daughter, Emily.  I want to be an example to her that no matter how timid you are, no matter how tough the road ahead seems to appear, you can overcome and accomplish anything when you’re following God’s will.  It’s much the same as when I participated on the worship team at church.  I love to sing, but I am terrified of singing in front of other people.  Not only did I have to sing in front of the congregation, I also had to sing with a microphone!  I was a bit notorious for not turning my mic on in the beginning.  Since then I’ve not only sung with the worship team, but I have also done several solos (which also scares the pants off me!).  I didn’t do it to be in the spotlight, I did it to show Em that no matter how scarred mommy was of singing publicly, I overcame my fear.

So those are the main reasons I have been speaking up and speaking out about epilepsy. 

Cat

A Matter of Semantics

As I embark on this journey with epilepsy and interacting with more people in the epilepsy/seizure community I’ve encountered many different views.  Although I’ve learned a great deal that’s positive, I’ve also discovered dissention which troubles me.

Let’s face it, some people love to nitpick.  They seem to be argumentative by their very nature.  Others may lack knowledge on a particular subject and form opinions based on that limited knowledge.  Then there are some who don’t seek out information independently of what their doctors say, trusting their doctor knows best.

What troubles me in particular is a certain amount of nitpicking when it comes to the very basic terminology used for epilepsy.  I’ve seen fights erupt within the epilepsy community over a simple word or turn of phrase.  

Let’s start with the very definition of epilepsy as defined by the Epilepsy Foundation: “When a person has two or more unprovoked seizures, they are considered to have epilepsy.”

That seems pretty straight forward, right?

Yet, that being said, many people with reoccurring unprovoked seizures will argue that they do not have “epilepsy,” they have “a seizure disorder.”  (They tend to say things like, “Oh I don’t have epilepsy, I have a seizure disorder due to a brain injury” or something similar.)

I’m not totally sure why the word “epilepsy” is such a bone of contention.  Perhaps, because their doctor/neurologist used the words “seizure disorder” they believe it means they don’t have epilepsy?  Maybe they are scared of the word “epilepsy” and fear what others may think if that term is used?  Maybe a combination of reasons?  I’m not sure, but it frustrates me nonetheless.

Next comes the debate is epilepsy a “disorder” or a “disease?”

In researching epilepsy for my own purposes I’ve read many neurological articles which refer to epilepsy as both a disorder and as a disease.  I can accept either opinion, though personally I tend to lean to the disease terminology. 

An argument was recently made by someone who was offended to be told epilepsy is a disease was that epilepsy is not contagious therefore it can not be considered a disease.

That is not firm ground on which to build an argument.  Why?  Because it is a basic fact that not all diseases are contagious.  I can name a long list of recognized diseases which are not contagious, but lets start with the basics of defining a disease.

From the free dictionary: “disease /dis·ease/ (dĭ-zēz´) any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown.”

A really good argument for why epilepsy can be considered to be a disease can be found here:  EPILEPSY IS A DISEASE (NOT A DISORDER) - ONE INDIVIDUAL'S PERSPECTIVE

Another touchy subject I stumbled into deals with the very defining semantics of epilepsy.  If you have epilepsy are you “a person living with epilepsy,” or “epileptic?”  Never in my wildest dreams did I imagine referring to myself as epileptic would be such an earth shattering, offensive thing to many people!  I just want to say, “Really?”

We have become such a “politically correct” culture that we’ve begun redefining medical terminology to make things sound less “offensive” in the opinions of some.  Not all the newer definitions are a bad thing, however changing “epileptic” to “living with epilepsy” seems utterly ridiculous to me.

For example, when someone has blood glucose issues what are they called?  Diabetic.  Yep, someone living with diabetes is called a diabetic.  Someone living with blood clotting issues is called a hemophiliac because they live with the bleeding disorder hemophilia.  So then why is is such a huge issue to use the term epileptic for someone living with epilepsy?

I think the bottom line is simple.  Public perception, negative stigmas and myths that even today still plague people diagnosed with epilepsy. Rather than putting ourselves out there publicly and educating our friends, families, co-workers etc. many choose to hide our disorder/disease away and/or change the terminology.  What’s wrong with this picture?

We are giving far too much negative power to these words.  Whether it’s due to our own personal fears or because our doctors/neurologists are not well educated in the subject, we are as much to blame for continuing the negative stereotypes, myths and stigmas.  We as a community should be learning and then educating others rather than redefining existing terminology.

Who out there knows the Harry Potter series (books or movies)?  Remember Lord Voldemort?  No one dared speak his name and he was referred to as “he who shall not be named.”  His name was given power simply due to the fear his name invoked.

I think it’s much the same in the epilepsy community.  The words epilepsy, epileptic, disease… they carry a burden of fear for many people.  Not just those diagnosed with it but also friends, family and people who have little knowledge about it.  But as they say, “Knowledge is power.” 

In my opinion we need to stop allowing the negative connotations to spread and start educating and speaking the truth about epilepsy.  Stop being afraid and find our inner strength to not only educate others, but to first educate ourselves.  Don’t be afraid to question our neurologists, after all they work for us and they can be fallible.

With epilepsy being so prevalent (approximately 1 in 100 people diagnosed) we need to stand together as a community and stop nitpicking over semantics.

Just one epileptic’s opinion.
Cat