Tuesday, February 21, 2012

Tough Day

Today has been a tough day for me.  Last night I didn’t get to sleep until well after 2:30am.  Thankfully my hubby didn’t have to work today due to the holiday.  I woke up at 4am, 5:30am, 6am and then I think it was around 8am when I noticed Dave wasn’t in bed and I went back to sleep again.  Around 9am ( I think) I felt our daughter lay her stuffed giraffe in bed next to me and whisper, “here mommy.”  I slept a little while longer and finally got up at 10:45am.

You’d think I’d feel great, but I felt like I had no sleep at all.  Hubby had closed the bedroom door so I could maybe get some sleep as he could tell I’d been tossing and turning.  He saw Em sneak in the room and give me her giraffe.  I made sure to give her an extra tight hug, kiss and a thank you for her sweet gesture of offering me her giraffe to cuddle.

Dave was a trouper today.  He watched after Em, did dishes and other stuff and let me try to rest.  I spent nearly the entire day in my jammies and crocheted some tiny roses for the Epilepsy awareness ribbons I plan to give out for Global Purple Day.  Still, I felt like I’ve been run over by a truck.  No energy and zapped of any happy feelings.

Maybe it’s partially due to the weather.  It’s been gloomy and rainy all day and that could be kicking my fibromyalgia into high gear.  However several times this evening I’ve cried (hid it from hubby though).  I’m not sure why I feel so down today/tonight.  I’m hoping it’s not a side effect of the generic keppra rearing it’s ugly head.  I know that depression can be a side effect, but was hoping I wouldn’t experience it.  We’ll see.  As I said it could just be the weather triggering my fibro.  That and my lack of sleep the past few days.

I just looked at the clock and see it’s just after midnight now.  I thought I’d be in bed long before this. Uhg.  So I’ll end here and try to get some rest.  Hopefully this is just a brief passing thing and I’ll feel better tomorrow. 

Hugs to all,
Red roseCat

Monday, February 13, 2012

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,
Red roseCat

Saturday, February 11, 2012

Joys of Medication… “dream a little dream” & “hair today, gone tomorrow.”

Almost all medications can involve some sort of side effects.  This is no different when it comes to antiepileptic medications.  Some side effects of Levetiracetam (generic Keppra) can be good, such as it may stop or reduce the number of migraines.

Still, other side effects can suck, big time.

First, let me say I am not a “morning person.”  Yet this morning I woke up at 5am, wide awake!  One of the side effects from my Levetiracetam is vivid dreams.  So far none have been nightmares.  Usually they are dreams that make me say, “hmm, that was weird,” when I awaken.  They are all very vivid and realistic.  This morning’s dream was one that came from memories in my past and left me feeling a bit uncomfortable.  Hence the reason I decided to get up and make coffee rather than try to go back to sleep.

Another side effect I’ve been noticing more increasingly is hair loss.  It seems every time I brush my hair or wash my hair I am seeing an increase of hair left in my brush or comb. Uhg.  I’m not going to go bald, I don’t have any bare patches, but it’s still a bit frustrating to see.  That’s just my own struggle with vanity I suppose.  The hair loss should taper off after I’ve been on the Levetiracetam for about six months or so.  It’s all just a part of my body getting used to the medication.

The dizziness and lack of coordination have gotten tons better already!  I’m happy about that.  It’s no fun standing up and suddenly  having the room spin, or walking across the room only to find you’re beginning to tip sideways into the wall, or even tripping over your own feet.  That was driving me a little crazy as I am not the most coordinated person in the first place! 

I am also no longer zombie like.  I don’t feel totally exhausted and out of it all day.  I really believe taking the 100mg of vitamin B6 with my morning Levetiracetam helped with that.

All of those side effects are not-so-bad in my opinion and well worth it when it comes to preventing my generalized tonic-clonic seizures.  So I’ll stick with my Levetiracetam as long as it seems to be keeping my seizures controlled and as long as I don’t develop some of the more dangerous possible side effects.

If you are placed on an antiepileptic drug my advice to you is not to give up on the meds during the first few weeks if you experience similar side effects as I have.  Give your body time to adjust, odds are it will and the side effects will subside.  However, if you experience some of the more severe side effects that are possible with these medications, do not hesitate to call your neurologist or epileptologist and discuss it right away.

Hugs to all,
Red rose Cat

Friday, February 10, 2012

I WILL NOT KEEP SILENT!

The more I read and learn about epilepsy the more I find that there are still stigma’s attached to the “E” word.  Many people hide the fact that they have epilepsy and fear that someone will find out.  I REFUSE to keep silent and hide! 

I understand why they hide their epilepsy, don’t get me wrong, I am not angry or disapproving of their decision to hide.  What I am upset about is that due to lack of understanding and awareness of the truths about Epilepsy people are made to feel they need to hide!  In this day and age people shouldn’t fear someone may “find out” they have “E.”

Since my generalized tonic-clonic seizures began, a little less than a year ago, I have learned a great many things about epilepsy.  A year ago if you said the word epilepsy I would of thought several things. 

  1. Grand Mal seizure
  2. Petit Mal seizure
  3. Go on meds & everything’s fine.

I now know just how wrong I was and how little I knew about the condition! 

There are over 30 different types of seizures.  Not all seizures effect muscle control (no jerking or convulsions). 

One in ten adults will have a seizure at some point in their life.  One seizure does not mean epilepsy.  Two or more unprovoked seizures mean epilepsy.  One in one-hundred people will be diagnosed with epilepsy!

Medication can be a beginning step in the right direction, but it takes a long time to find out if your medication is working.  There are over 18 different antiepileptic drugs and some are seizure specific.  Sometimes a person may require more than one type of drug to control their seizures (especially if they suffer from different types of seizures).  Some people may even require surgery to try to control or stop their seizures.  Then, lastly, some people may live their entire life never having control of their seizures.

I learned about something called SUDEP.  It’s Sudden Unexpected Death in Epilepsy.  This refers to the unexplained death of an individual, with a diagnosis of epilepsy, who dies suddenly, in benign circumstances, without a structural or toxicological cause for death being found at autopsy.  I have also learned I am at a slightly greater risk for SUDEP because of my nocturnal generalized tonic-clonic seizures.  See: SUDEP – Wiki  and SUDEP Aware.

Did you know that seizure related deaths occur at a higher rate than breast cancer deaths?  I didn’t.  Here’s a few facts for you:

“Research has estimated that approximately 50,000 people die each year in the USA from status epilepticus (prolonged seizures), SUDEP, and other seizure-related causes. SUDEP accounts for 8-17% of deaths in people with epilepsy. Roughly 1 in 100 sufferers of severe epilepsy die of SUDEP every year. For sufferers of mild idiopathic epilepsy (epilepsy of unknown cause), the figure drops to 1 in 1,000 per year.”  (Wiki)

Since my first nocturnal generalized tonic-clonic seizure, as I was regaining consciousness in the back of an ambulance, I have felt at peace.  The more I learn about “E” the more I feel “blessed with a burden.”  Sounds strange huh?  Let me explain.

I am a Christian.  I believe God can heal me, but I also believe He can choose not to.  I believe God is allowing my epilepsy for a purpose.  Either to teach me, teach others through me, or both.  Whatever the reason, I trust God and I know He is in control.  So I feel peace.

The more I learn about “E” the more I want to shout from the rooftops everything I am discovering!  I refuse to remain silent and hide.  I want to speak out for those who can’t or who are afraid to.  Let’s put an END to the silence.  Let’s put an END to the stigmas attached to one of the most common neurological conditions!

Think about participating in Global Purple Day on March 26th.

Speak up and don’t be afraid to TALK ABOUT IT!

Red roseCat