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

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

Dream? Seizure? Both?

Today I had a very strange/disturbing experience.  After a long stressful weekend we came home Sunday exhausted.  This morning I awoke still feeling tired.  By early afternoon I couldn’t keep my eyes open.  I took my daughter to her room and told her mommy needed to take a rest.  She gave me a hug and I went to the bedroom to lay down.

It didn’t take long and I was asleep.  As I slept I had a vivid dream.  It was really neat.  I was here at the house, looking out over the cornfield.  It was sunset and there was snow on the ground in my dream.  I was taking pictures of the sunset reflecting on the large silo’s (which don’t exist in reality) and thinking to myself I should do an oil painting of the scene. 

A neat side effect of my meds & B6 is that my dreams are very vivid in color and I have a good memory of them when I awaken.  When they are good dreams it’s really neat to remember them in such detail.

Shortly after taking the pictures of the sunset in my dream it faded to black as it normally happens before I awaken.  This time however, things took a dramatic unexpected turn and I have been left wondering.

Suddenly I opened my eyes (so I thought) and I saw gray & black fuzzy specks, like on an old TV when you don’t have a channel signal.  Next I saw petal shape outlines in white that started small and then grew in size as they moved from the center towards the outer edges.  One after another all starting in the center then moving (sort of like concentric circles).  Then I suddenly felt strong tingling sensations in the top of my head.  In this “dream” I realized I was beginning to seize.  The tingles continued to gain intensity and then washed down my neck, shoulders and body in relentless waves.  In my thoughts I knew I was having a seizure but was unable to stop it.  I wanted it to stop.  I didn’t like it at all and for the first time I felt a strong sense of fear.  It seemed to go on for a very long time. 

When I did finally manage to wake up I was completely confused.  I thought it was a really weird dream… at least that’s what I tried to tell myself.  All my body wanted to do was go back to sleep.  My mind did not want to go to sleep as I was still feeling a sense of fear and wondered if it was possibly a ‘real’ seizure?  When I finally managed to sit up I realized I had been drooling.  My cheek was wet and my pillow was drenched where my head had been laying.  Still I tried to convince myself this was just a weird dream.

Why then am I now wondering if it was a seizure?  Several reasons.  First the sense of confusion which is still lingering nearly 8 hours later.  Second, I began developing a headache right after awaking and it’s still with me now.  Third, I am exhausted and achy.  My body hurts, my  head hurts and I feel like I could sleep a week easily.  Lastly, when I got up my daughter asked me if I was “Ok?”  Apparently she heard something and was worried something was wrong with mommy. 

My neurology appointment is on 14 March, so I will definitely be telling my neuro about this and see what he says.  Maybe it was just a dream, but I have to say it was a very disturbing experience and I won’t be forgetting it any time soon.

Cat

My Seizure History - Part 2

The minute we got home following the neurologist appointment when I got my test results the count down began.  I marked on the calendar what would be the 90th day following the first (hopefully only) seizure when I could finally drive once again.

August 24th at 7am I was awakened by my hubby.  He told me, “you just had another seizure.”  My response was simply, “oh crap,” then I went back to sleep.  It wasn’t until several hours later I awakened, sore, head splitting with a migraine and a bit confused as to why I had been asleep so long and why my hubby was home on a day he should have been at work.  That’s when the reality sank in that I indeed had another seizure.

The neurologist had told us if I did have another we didn’t need to call 911 unless the seizure lasted longer than 5 minutes.  All there was to do at this point was try to rest.

The next day David called the neurologist and left a message that I’d had a second seizure.  It had only been 67 days since the first seizure. 

We were a bit surprised that the neurologist never called us back. 

During that time my husband’s father was not doing well.  He was in a nursing home and his health was going up and down.  We were also at that time preparing to make a decision as to whether or not to renew the lease on our apartment or not.  Add on top of that the new school year was beginning, which is one of the intensely busy times of year for my hubby who works for the school district.

What we had both forgotten was that we had left our old cell phone company.  We decided to go with trac phones until after the start of the new year.  So the neurologist DID try to call us back, but we had new numbers and he only had our old numbers.

Later on in September as we were in mid-move from our apartment to a house rental, David’s father passed away.  Let’s just say that 2011 was a very tough year for many reasons.

In January we received a reminder card in the mail from the neurologist’s office.  It was time for my 6 month follow up appointment.  Before we even had a chance to call and set up the appointment I had seizure #3.  January 5, 2012 at 4:55am came the tonic-clonic.  This one was a tad different.  For some reason I regained consciousness at the end of the clonic phase.  I heard the sounds I was making, saw my arms jerking and couldn’t do a darn thing to stop either.  It was the end of the clonic phase, so it was only a few seconds that I was aware I was seizing, but wow, it was a very weird experience!

January 13, 2012 I had the follow up appointment with the neurologist.  We talked about the 2nd and 3rd seizures.  He gave me a sort of “hand slap” about not being able to get ahold of us after the 2nd seizure and said we needed to get me on medication to try to stop and/or control the seizures.  He again asked Dave the specifics of the seizures and asked me specifics of the post-ictal phase of them.

During the discussion he asked if I ever stared off in space (and explained absence seizures).  I said no and then double checked that Dave had never seen me do that.  Then I asked about something that’s bothered me for years.  I told the neurologist about how on occasion I will go to bed at night and as soon as I lay down I hear voices or music, sort of muffled, like a tv or radio was left on in the other room.  It has caused me on more than one occasion to get out of bed and check that tv’s & radios were off. 

The neurologist simply said, “hmmm,” then changed the subject back to trying the medication Keppra.  All I could think at that point was, “great, I’m having seizures and NOW the neuro thinks I’m nuts too!”

Since that time I’ve been learning a great deal about epilepsy and the many different types of seizures… one of which is exactly what I described to the neuro (music /voices) and is considered a simple partial seizure!  I’ve also discovered that several things I’ve always brushed off as being symptoms of my fibromyalgia are in fact simple partial seizures as well.

It would seem my seizure history goes well beyond that seizure on 18 June 2011!   Recently, I was reminded that during my first marriage, while living in Yankton, South Dakota… I had a tonic-clonic seizure after a routine blood draw in my doctor’s office.  That was sometime around 2002 or 2003.  I’d forgotten all about that! 

Needless to say, I have a great deal to discuss with my neurologist at my upcoming appointment on 14 March!

Cat

My Seizure History - Part 1

The 16th & 17th of June 2011 my husband and I were attending a business conference in Kearney, Nebraska.  Friday was a long but exciting day.  After the conclusion of the conference we headed back to Omaha.  On our way home we stopped in Hastings to visit my step-mother.  My father had passed away April 22nd the morning of Good Friday, and we wanted to see how Dorrit was doing.  We had a wonderful evening and we all went out to dinner together.  My friend Theresa and her family kept our daughter Emily with them overnight while we were away at the conference.  That Friday, she text me and asked if Em could spend another night with them.  Em was having fun and Theresa thought it would be easier on us if we didn’t have to rush back to Omaha to pick her up.  We agreed to let her stay another night, which turned out to be a “God thing.”

We arrived home around 11:30pm, exhausted.  We literally dropped our suitcases and laptops in the living room and went straight to bed.

At 3:10am I awoke (regained consciousness) in the back of an ambulance on the way to Lakeside Hospital.  I couldn’t move and thought I was dreaming until the EMT began asking me questions.  He told me I’d had a seizure and my husband had called them.  He reassured me that everything was fine.  I was very confused.  A seizure?  Me?

He asked me my name, my date of birth, my age and where I had been / what I’d been doing earlier that day?  I knew my name, told him my date of birth then proceeded to give him the wrong age… I made myself a year older (you’d think being a woman I’d err on the side of making myself younger! LOL ) When it came to where I had been or what I’d been doing I was clueless.  He told me not to worry, just relax and said he was going to start an IV.  I remember being able to lift my left arm for him.  I felt the IV needle go in, the cold IV fluids going in and then passed out again.

Once we arrived at the hospital I remember being taken out of the ambulance (vaguely).  I have no memories of what the EMT’s looked like, I never saw their faces. My first clear memories are from inside the ER.  After transferring to the bed I saw David, my husband, come walking towards the exam room I was in.  I looked at him, threw my hands up and made a face like, “what the heck?” He smiled, relieved to see what he’d consider a typical “Cathleen” response.  Then I looked expecting to see Emily by his side and was shocked (almost panicked) that she was not with him.

When I asked where Emily was he looked at me and said, “Seriously?  You don’t remember?”  I said no.  The nurse assured him it was normal to have amnesia after a seizure.  After some prodding I eventually remembered she was with my friend Theresa, but had no idea why.  It took quite some time and prompting before I realized we’d been at the conference.  At this point I was still unconvinced I’d had a seizure and even asked David if he was sure he didn’t dream I had a seizure and called 911?  He laughed and said, “No, I didn’t dream it, you HAD a seizure.  The firemen and EMT’s couldn’t even wake you up!”

Uh… firemen?  Suddenly as I was becoming more aware of things and I also became quite … well… mortified.  I was sleeping nude… and now I was finding out that our apartment had been full of firefighters as well as the two EMT’s all trying to awaken me.  I wanted to crawl under the bed!

The ER nurse was incredible!  I couldn’t have asked for a better nurse. She was supportive and caring.  I would love to meet her again and give her a big ole hug and a thank you!  She did her best to reassure me that the EMTs and Firefighters had “seen it all” and I had no reason to be embarrassed.

The ER doctor however, was quite the opposite.  He seemed convinced that drugs or alcohol had been involved in my seizure.  It wasn’t until my urinalyses and blood panel work came back that he suddenly changed his tune a bit, realizing there were no drugs or alcohol in my system.  My EKG was normal and once my CT scan results came back negative, he then said what happened was not a “real seizure” because I had not (in his words) “peed or pooped during the event.”

We were sent home after being told to follow up with our general practice doctor and a neurologist.

During my time I the ER I had a wicked migraine and couldn’t wait to get home so I could take my Excedrin!  Once the migraine began to subside I was completely spent.  The rest of the morning and afternoon I was in bed sleeping.  In the late afternoon my girlfriend brought our daughter home and checked on me.  It wasn’t until I got out of bed that I realized every muscle in my body hurt, like the worst fibro flare up ever!  My legs were weak and shaky and all I wanted to do was go back to bed.

First thing Monday we saw our general practice doctor.  As David briefly described what happened our doctor said immediately it was a classic tonic-clonic seizure.  He said it was beyond him and I needed to see a neurologist.  He told us a huge number of people every year experience their first ever seizure and that half of them live the rest of their lives never having another.  We all hoped that would be the case.  He also shook his head when we told him what the ER doctor had told us about it not being a “real seizure.”  He said not all people lose bladder or bowel control during a tonic-clonic seizure, and the ER doctor should have known that.

I never really got the full picture of my seizure until we saw the neurologist.  As David described to him what happened the neuro would stop him and ask very specific questions.  Let’s just say my jaw dropped more than once hearing the description and I even said, “really?  I did that?” a few times too.

Apparently at the very beginning of the tonic phase I let out a cross between a scream and a moan, which is what awakened my hubby.  Then he said my body went ridged and almost appeared to levitate when I stiffened. That only lasted seconds, quickly followed by total body convulsions (clonic phase) during which I was making gasping/ moaning/swallowing sounds.  The entire seizure lasted less than 1 minute, but seemed like an eternity to my poor hubby.

The neuro assured us it was a tonic-clonic seizure, gave us the same seizure statistics as our family doctor, and then ordered tests and a follow up appointment.   A week later I went to the hospital for a sleep deprived EEG followed by an MRI without and with contrast.  The next week we went on the follow up to get the results.

Both the EEG and the MRI were negative.  I had mixed feelings about this.  Part of me was very happy they had not found anything terrible!  Yet part of me was bothered that nothing was found that could explain the seizure.

Being the computer geeks we are, we decided that apparently my brain just needed to “reboot” and I’d probably never have another seizure.

After some brief discussion we were told I needed to be seizure free for 90 days before I could drive and I would need to have a follow up appointment in 6 months.  Then the bomb dropped.  The neuro looked at me and said, “If you are developing a seizure disorder the second seizure will follow within the first year.”

A year?  I have to “wait and see” for an entire year before we can say it was an isolated incident?  I was very surprised.

We went home.  We kept the hope that this would be a one time event and I’d go on the rest of my life seizure free, but that was not to be the case.

To be continued…

Cat

A Good Side Effect!

If you have to have a side effect from a medication you might as well have a good one!  I am happy to report I have experienced just that!

For the first time in 4 years I have been migraine free for one month!!

My neurologist said that migraine prevention or reduction could be a possible side effect of the Levetiracetam.  I kept my fingers crossed and hoped that might be the case for me.  Even though it’s only one month, for me that is a lot.  I’ve had monthly migraines for the past 4 years without fail. 

My migraines are classified as menstrual migraines, meaning I get them anywhere from 2 days prior to the onset of my period until two days after it begins (a four day window).   I can always tell when I’m about to get one too.  I get a stiff sore neck, nausea, and the worst… my sense of taste goes wacky on me and nothing tastes like it should. 

My three tonic clonic seizures have all occurred this past year when I developed the migraine at night while sleeping.  I’ve suspected that the nocturnal migraines are what trigger the seizures, now I’m not so sure.  Although I do still feel there’s some sort of connection, I have learned that the changes in my sense of taste could in reality be a simple partial seizure.  The nausea could be an aura of my nocturnal migraine, or it could be an aura to the oncoming tonic clonic.  It leaves me scratching my head (and I think my neurologist too) .   They do say that migraines & seizures are “cousins.” 

Women who experience migraines with auras are at a higher risk of developing seizures/epilepsy.  Not all people with epilepsy have migraines and not all people with migraines have seizures, but there is definitely an overlapping.

I also have to report that I am finally feeling like myself again.  I had quite a few days there where I went from apathetic to very depressed.  I was close to calling my neurologist.  I gave it a set number of days and if it didn’t get better I was going to call.  Then finally it did get better.  I am wondering if the side effects of the Levetiracetam are amplified by hormonal changes?  That’s a question I will be asking my neurologist on the 14th of March.

Speaking of which, I am not exactly happy with my neuro or his office at this point in time.  We realized after our last visit (David, my hubby always comes with me) that the neuro didn’t give us an exact answer.  So last Thursday I called his office and asked a direct question.  I was told by his nurse she would find out and call me back if not later that afternoon, then on Friday.  Friday came and went with no call.  I still haven’t received a call back and it’s Wednesday… nearly a week later.  That in itself is frustrating.  I’ll probably call Thursday morning since I’d really like to have an answer before I forget that I ever called.

I’ve been busy lately, crocheting like crazy.  I’m making lavender awareness ribbons with small crocheted purple Irish roses on them for Global Purple Day 26 March.  Lavender is the international color for epilepsy awareness, and purple is the color chosen by Cassidy Megan, the founder of Global Purple Day.

Well it’s late and despite my Levetiracetam insomnia I need to try to get some sleep.

Hugs to all,
Cat

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,
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