A Long Summer

It has been a very long spring/summer this year.  That’s why it has been a long time since I posted.

After recovering from the virus that hit me just prior to the proclamation signing I developed another virus.  This one hung on for a long time.  After a month I reluctantly went to the doctor who told me my lungs were irritated and put me on the steroid prednisone for seven days.  Instead of getting better I got worse.  I returned to the doctor and discovered it had turned into a bacterial infection.  I was sent home with a prescription for antibiotics (10 days) and codeine cough syrup.  After what seemed to be an eternity I finally got well again.

However during this time things had become very hectic.  We had been house sitting for 6 months and the home owners asked if we’d like to stay through the summer and following winter.  We love the house and property so we said yes!  When they came home in the spring, they began to clear out things so we could unpack more of our stuff and settle in better.  Although it was nice and feels good to not be living out of boxes, it did cause quite a bit of over doing it on my part.  My body simply doesn’t handle heat we had this summer and heavy work very well any more.  It’s not only because of my epilepsy, but because I also have fibromyalgia.

During all this time I had some family issues going on with relatives.  It didn’t take long before I began to feel like a pressure cooker about to blow.  I also began to withdraw from everything.  I had tons of unanswered emails and rarely interacted outside my home. I was tired all the time.

Although levetiracetam can cause depression I really didn’t believe that was the culprit.  I think the combination of situations all collided at once and the result was depression.

One of the hardest moments prior to my “shut down” was learning that members of my immediate family have been talking about me.  They apparently believe I looked up epilepsy online and convinced myself I have it.  That was the preverbal straw that broke the camel’s back.  I felt like I’d been punched in the stomach.  Family is the greatest source of support and I just discovered I did not have support from them.

When talking to my husband about it he told me maybe we should send them all copies of the medical bills and lists of tests that have been run and see what they say. 

I keep thinking to myself who in their right mind would ever want to have epilepsy?  Why would someone think I would “convince myself” I have a condition/disease/disorder such as this?  Do they think I enjoy being on medication that is causing a laundry list of side effects that I have to deal with daily?  Do they think I am enjoying watching my hair fall out by handfuls every time I brush my hair, or having vertigo, dizzy spells, insomnia and on and on?

Then there are also whispers about how I keep posting epilepsy information on my facebook page and it’s annoying.  Really? Seriously?  I am an advocate for Epilepsy Awareness.  I am an official Ambassador of Purple for PurpleDay.org.  With 1 in 26 people being diagnosed with epilepsy at some point in their lifetime OF COURSE I’m going to spread information and awareness.

Needless to say all of these things began getting to me until I withdrew from everything and almost everyone. 

Slowly now I am getting myself back on track.  It’s still a struggle and it still hurts that my family isn’t supportive, but I have to carry on.  I need to carry on for myself, my husband and daughter who I love dearly and who are always there for me.  I have to carry on for all the people diagnosed with epilepsy and those who will find themselves diagnosed within the days/weeks/months/years to come.  Bottom line, I have to carry on.  So I am holding my head high again, picking myself up and pushing forward. 

Hugs,
Cat

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

Reactions to Epilepsy

Recently, a forum I read had a poll question about how people respond to epilepsy for you.  Some of the choices were things like: “overreact, under react, just right, they don’t know, they don’t care and other.”

Many people chose to hide their epilepsy from all but their closest friends & family (due to fear caused by the stigmas attached to having “E.”)

I haven’t been silent about my seizures.  I’ve been honest since what I thought was my first one on the 14th of June 2011.  (more on that later) 

This poll question made me stop and think about the reactions people in my life have had.  I’m happy to say most have been supportive and understanding.  They’ve questioned me, wanting to know & understand more about epilepsy and what it means.  A couple people have overreacted and I’ve had to sort of calm them down and assure them the world isn’t ending, my life isn’t ending, it’s OK.  A few had no real reaction other than being relieved that in some way we finally had some answers.

I can’t complain, I am very blessed with supportive people in my life.

Then Saturday happened.

It was my first “punch in the gut.”  I found out that a close family member (who I have not directly spoken to about my epilepsy) was saying that my epilepsy is made up & all in my head!  ----OK so they are partially right as epilepsy IS in the head…. but I digress.

They’ve apparently been saying to other family members that I “willed” myself into seizures after reading about them on the internet!  WHAT?

Have I read about seizures on the internet?  Sure!  AFTER my 2nd seizure, because I was trying to figure out what the heck was going on.  I knew the neurologist said that the 2nd seizure would follow within the first year if I was developing a “seizure disorder” ( the term they use for epilepsy because they feel it’s a softer blow than saying “E” outright).  I didn’t really learn too much and was still convinced I wouldn’t have another seizure… even though I’d discovered that 2 or more seizures = epilepsy.   AFTER the 3rd seizure on 5 January 2012 I read more so I’d know what kind of information I needed to have for my 6 month follow up with the neurologist later that week.  Glad I did too because I had everything in order to give him when we were in his office. 

I was literally speechless after hearing this.  After I got over the initial shock I then became angry.  Not your run of the mill “I’m miffed” sort of angry, more like totally enraged angry.  I could not believe this person would think such a thing much less say it out loud to other members of the family.  I wanted to call them immediately and say, “Do you really believe a neurologist would place me on an antiepileptic medication…. at a fairly high dosage… not to mention a very expensive medication if I was making this up? Do you REALLY believe a neurologist, trained in epilepsy and specializing in electrical anomalies in the brain, would be fooled by someone making it up? SERIOUSLY?”  AARRRRRG!

After speaking with my husband Dave, (ok more like ranting to him) he said I needed to let it go and try not to let it bother me.  (Good advice since stress & anxiety can trigger seizures in someone with epilepsy.) He said we know the truth and the people who truly love and care about me know the truth and that’s all that matters.

I also talked to one of my best friends about the situation.  Her response was maybe I should take the ambulance bill, the ER bill and the neurology bills to this person and show them the costs involved with my “made up” seizures.  She knows me well and the family member of whom I speak and was not surprised.  She told me (as did my hubby) not to waste my time & energy worrying about it.

Easier said than done I’m afraid.  It was a very painful blow from an unexpected source.  I’m no longer as angry about it as I was, but there is still pain from being deeply wounded by the situation.  It’s tough when you expect support, love and understanding from family and find that instead you are being talked about behind your back and dismissed as “making it up.”

For a short amount of time I began to rethink what I have felt to be a calling.  I thought about ending my blog, not saying one more word on facebook about epilepsy and telling our pastor I will not speak the Sunday before Global Purple day. 

Following my third seizure I had become excited with all I was learning about epilepsy and wanted to share it with anyone who would listen.  I have “reshared” posts of epilepsy facts from various epilepsy foundation facebook pages in order to promote awareness.  I felt called to become an advocate of epilepsy awareness.  I felt blessed to be able to do these things which not only help myself, but would help many other people.  To be able to speak for people who couldn’t or wouldn’t speak for themselves. Then with one blow from a family member I nearly gave all that up.

Now, after a few days to let myself settle down, although hurt, I will not let this person become a roadblock to doing what I know is right and what I feel God is calling me to do.  We all face roadblocks in our lives and they do not define us, it’s how we handle them that defines us.  I will not be stopped.  I will not let this person silence my voice and stifle my calling.

I think I just had my very first hard lesson in why many people choose not to disclose their epilepsy. 

Hugs to you all,
Cat