Understanding Epilepsy

Epilepsy is not the moment when your brain takes control of your body, then violently tosses it back and forth. It is not the tongue biting, the absent stare, the losing bladder control, the fainting, the drooling, or the involuntary yell when the air is expelled from your lungs. THAT is the seizure. Most people with Epilepsy spend 99% of their lives in the interictal stage. (Epilepsy.com)


Interictal: the time between seizures


Having a seizure sucks. It just does. But, I am not really aware until I have had one that I actually had a seizure. So, I only deal with the aura and the postictal stage of the actual seizures. It is the interictal time, in my opinion, that is THE most difficult. Unless someone has actually spent the time to read the information or asked the person, the general population thinks that Epilepsy is the seizure. The interictal time is different for each person. This is what keeps me up at night and alters my daily life. Not the seizure.

• Fear of having a seizure-especially when I am in public


• Figuring out how I am going to go buy groceries


• The inability to keep up physically-fatigue


• The need for more sleep than most people


• Trying to hide my limitations so that no one knows I am struggling


• Extreme anxiety


• Auras-mostly when I am stressed or tired. (Numbness/tingling in my lips, visual disturbances in new environments-seeing things move that really aren't there, feeling the bed move when no one is moving, the feeling of "electrical surges "zaps" when I close my eyes, nausea, rapid heart rate, sweating, changes in my speech, the inability to think of the right word to say, short-term memory loss.)


• Taking medication every day for an unknown amount of time


• Medication that interrupts the normal sleep cycle-resulting in fatigue, anxiety, and agitation


• Managing the stress, anxiety, medication, and sleep


• Managing my own health care and treatment plan-finding the right physician is VERY difficult


• Bring awareness to those who do not understand

These are just the things I deal with on a daily basis. This does not include my actual life; work, home, child. I am thankful that I do not have to worry about having a soft floor in my house in case I fall. Or, knowing that I will never be able to drive again. Some people have brain surgery to CONTROL, not get rid of entirely, their seizures.

And, without warning-some people never wake up the next morning because they died in their sleep from SUDEP. Yes. That is a real issue. It happens. And, that is what those of us who battle this disorder are faced with every single day.

Epilepsy does not go away. The medication does not control this interictal period. My brain still has abnormal activity. The medication just controls the seizures. Knowing that family and friends really do understand this disorder means the world to me and the rest of us who deal with this. We look fine on the outside. But, we are dealing with a GIANT monster on the inside. I can still do everything I did before and be just as, or more, successful professionally. But, I do have an added stress. My employer is the best ever and I mentally give them a giant hug everyday.

I hope that understanding what Epilepsy really is, and what it is not, allows people to take a step back and think for a moment. It really is appreciated by all of us who have Epilepsy and those who advocate.

Independence Day-August 17, 2011

This weekend, the meaning of "it takes a village to raise a child" became a little more clear to me. I see my neighbors shuffling their kids, and many other area kids, to soccer practice, band practice, recitals, church, and wherever else kids go in large groups. My kid isn't to that stage yet. But, it is nice to see other people helping each other. *Insert cricket chirping sounds*

Then, there is my convoluted life. I am the telecommuting Mom of a stay-at-home toddler. (He has an in-home sitter.) So, while many people I know take their kids to a Gma's house or a daycare, I hear all the screams of joy and sadness from my office. Please keep in mind that I still cannot drive. So, the screams are quite magnified because I know I can't get away. Right now, I KNOW that I need to go to the store to get milk. I wouldn't have this thought if someone (not me) had not left an ENTIRE gallon of milk on the counter for 2 1/2 hours. How will I get there? And, like another Mommy blogger post I just read about "the village," I HATE TO ASK FOR HELP.

Yes, my seizure disorder is a burden to everyone. I get a daily reminder of the following:

1. I cannot drive ANYWHERE-this annoys people who claim to be my friends because that means they might actually have to go out of their way to do something for someone else. Therefore, I just don't get invited to things.




2. I am more tired than most people




3. My patience is limited




4. My anxiety is high




5. I have to plan EVERYTHING in advance, more than usual (grocery shopping, fun activities, Mommy time-which never happens)

There are two things that hurt the most in this situation.

1. I can't spend quality time with my boy outside of the house. He loves the park. I can't take him. He loves the beach. I can't take him. He loves the indoor bouncy house place. I can't take him. He loves a treat from Chick Fil A. I CAN'T TAKE HIM. (This also leads to Daddy not getting his much-needed Daddy time because he is babysitting us both.)




2. Friends who are "too busy" to come get me and take me someplace fun (or someplace necessary!) ,to get a pedi, a cupcake, to Target, or to a lovely restaurant to enjoy a glass of delicious red wine, so that I can feel like a normal adult. Apparently, two hours is a lifetime to most people and they cannot afford it. I will even buy the wine!

(Let me say that there have been 5 people who have helped me. 1. my neighbor and former middle school teacher. 2. a client from WORK who drove me from his business location to my hair stylist. Umm, WOW! 3. my son's nanny. 4. my friend who drove me 2 1/2 hours to another city so that I could meet with a client...and back the very same day. 5. my partner. )

My village lives in Concord, NC; Franklin, WI; Spokane, WA; Port St. Lucie, FL; Upstate NY; Richmond, VA, some beachy town that starts with a P, VA; and in my heart with the other angels in this world.

Thankful

Despite my posts that display anxiety and frustration, I am thankful for what I have. I know that my situation could be MUCH worse. I have been reading blogs that describe a life of uncontrollable seizures. That is not me. But, we all have different outlets. This is mine. I am trying to adjust the best way I can without totally losing my mind.

I have a list of folks who have been so helpful. They know who they are. And, I will be forever grateful.

More Diagnostic Tests

I really thought I was finished with the diagnostic tests. Not so much.

I called my Doc today to report a possible reaction to the new medication. I am fairly disappointed in this development. I have been on the new med for almost 2 weeks. I was really hoping to be able to switch and ditch the nasty side effects of the other drug. But, that is not the case. I woke up with a rash on both feet. It isn't bad, but the Doc told me that if I have any signs of a skin rash to immediately stop the medication and call him. This medication can lead to some serious illnesses if there is a reaction. I prefer NOT to have any issues with the title of necro-. I will continue the 500mg of Keppra XR and discontinue the Lamictal. Bummer. But, good that I won't have to worry about the skin on my feet dying. (Dramatic appeal, but still true.)

While on the phone with the nurse, I discovered that her concern was more for another diagnostic test than to deal with this reaction. Apparently, another Doc in the practice reviewed my other tests and wants to have me do an ambulatory EEG. I also learned that the other Doc is more of the Epilepsy specialist. Question: Why didn't I see him first? Or, at least on the last visit? I mean, it was part of my initial visit when I told them I had Epilepsy as a child.

Anyhow, this AEEG did not bother me earlier. But, now that I have a few minutes to think, I find this somewhat unsettling. I also Googled images of this. Not good. So, basically I will go in at 11am on the selected date for them to hook me up. And, by "hook me up" I mean they will attach 16-32 electrodes to my head to record my brainwaves for 48 hours. I do not get to shower. I also cannot chew gum or eat anything crunchy. Oh, and no scratching the electrodes. One more, I can't let anything bump me. Riiiight. I have a 2 1/2 year old. I can forsee 48 hours of hell in my future. I better bring out the good deodorant. Although, logging every moment of my day's activities will be amazing. I have been thinking that maybe I should have Dominic go spend the night with Debbie or maybe I should go stay with my Mom. But, I think it is best to have that thing record my regular, daily life.

Of course, there are those folks who have bad experiences with things. And, those are the ones we read about on the internet. Doc's hate us internet self-diagnosers. Sorry, Doc. It is what it is. With the way healthcare is, we are forced to get our info from other sources. It isn't like I can call up my Doc and ask him myself. It isn't like I can totally trust his nurse (who has proven that she isn't all that responsible for relaying the correct info) to relay important info. I sometimes wonder if healthcare employees are so overworked that they just become numb and complacent? My brain may not be all that important to them. Telling me about one drug, when I actually take another, may not be a big deal to them. But, it is to me...it is to my child. And, THAT is what has me a little freaked out (and kinda frustrated) about all of this.

This "issue" has caused dramatic changes in our lives. It is not easy for us. In fact, it is quite difficult for all three of us. We are all making sacrifices right now. And, we try so very hard to make the biggest sacrifice so that our child does not have to sacrifice his time as a child to deal with his Mother's "issues." But, he is.

I can tell you this. When I am able to drive again, I will be sure to seek out those who have these issues too. A couple of hours out of my day once in while could make the biggest difference to someone and his/her family. I think about those people who have been there to help us. It is hard to accept help. It really is. But, it is much harder to ask for it.

I am thankful for people out there like, Glenn Fenster. He is cycling this country to raise awareness. AMAZING. Check out his Facebook page:
He is a hero to all of us.
http://www.facebook.com/group.php?gid=9505154026

Irritable Activity

I had my follow-up appointment this week for all of the diagnostic tests and to review medication. To recap, the head CT and MRI were normal. The EEG, however, was not. I expected this. Epilepsy is a life-long issue. It can become a non-issue for many people. And, it was for me for a very long time. Now that it is back, life will be very different for a while.

An EEG records electrical activity in the brain. The Doc wants to see steady waves. My Doc saw plenty of steady waves, but he also saw spikes. I asked him when the spikes were seen in the EEG. He didn't give me straight answer, but it made me believe that the spikes didn't only occur when my brain was provoked by hyperventilation and a strobe. He actually said, "there is some irritable activity in your temporal and parietal lobes." I honestly laughed out loud when he said that. I love it, "irritable activity." So, now I can use my irritable brain as a crutch if I say something offensive.

So, what does all of this really mean? It means, my brain has uncontrolled electrical activity and yours does not. The two types of major neurotransmittrs in the brain can't get it together to either increase activity or decrease activity. The result is a seizure. The medication I take is to control the activity. The first medication was called Keppra XR. It has not been kind. I feel tired, have insomnia, loss of appetite, crabby, and did I mention crabby? It is hard to be a Mom and a career woman with those side effects. Heck, it is never easy. But, it is a giant struggle on this medication. The Doc suggested a new drug that is supposedly more mild. But, I have to take both for a month. I have to have the new med in my system for a month before I come off of the old med. I still can't drive until the end of August. I also suspect that I will be on medication for at least two years.

I mentioned that the "irritable activity" was found to be in two lobes. That, of course, drove me directly to the internet to see what it means. It means, I freaked myself out. The different lobes in the brain are responsible for different functions. The Temporal lobes are on either side of your head, right above your ears. Think, your temple. The Temporal lobes involve sensory, memory, language, and personality. The Parietal lobes are centered between the top part of your head and the very back. So, probably the "crown." The main function is cognition and spatial relationships.

What does this mean for me? I have no idea. My biggest worry and concern is not that it will be an issue today or tomorrow. But, that I will end up with problems as I age, like dementia. I watched my dear Grandmother struggle with this. It isn't pretty. So, my extra time is now being spent looking up ways to take better care of my brain. Yes, you can actually take care of your brain.

Many people laugh about a more natural lifestyle. They can laugh. It is okay. But, it is not okay to think that our society is "okay." You are what you eat. So, if you eat chemcial-laden foods, processed foods, and slather aluminum under your armpits for 70 years, believe me, you will have problems.

Special Needs Mom

Pity-Party? Nope. Rant/Vent? A little. An outlet for frustration and Emotion? Absolutely.

I don't have Autism. I don't have Down's Symdrome. I don't have ADHD. I have Epilepsy. There are so many children with special needs. There are programs and support groups for the parents and the children. That is great. But, what about a special needs parent? I did a Google search for "Mom with special needs." I only saw sites and blogs for Moms who have CHILDREN with special needs.

As a child, I had seizures. So, MY Mom had a child with special needs. But, my Mom wasn't the one with the need...I was. Now, I am a Mom AND I have special needs. I do remember talks with teachers on what to do if I had a seizure. My desk was moved to the end so that if something happened, someone would have better access to me. I had to take medication and have regular bloodwork. That is all I remember. I honestly don't know what my Mother went through. I do know that she witnessed the first of my three seizures...all of which I vividly remember. Now, I am a Mom AND I have special needs. I can tell you from experiences sides of this topic. It is much more difficult to be an adult with a special need than to be a child with a special need. As a child, I had my Mom and my Grandparents. As an adult, who happens to have a successful career and family of my own, I have no one. There is no one to think for me, do for me, and make sure I am taken care of...but, me. I do have a small support system. Steve does what he can and so does my Mom. Deb (Dom's Nanny) will take me to the store or to get DOm's haircut. I am sure she would do more, if I asked. But, it is amazingly difficult to have to ask people for help on a regular basis. So, I don't.

You can only use your resources so much before they become exhausted. Forget what I WANT to do, I struggle with coordinating what I NEED to do. Every week I wonder how I am going to go to the grocery store and to a Doctor's appointment. Forget the fact that I would like a few minutes to myself. Perhaps, to walk around Target on my own time. Or, to go shopping for clothes...since I have dropped so much weight since my seizure. I have always been a very independent person. This is definitely a new and un-welcomed challenge.

I am, however, SO VERY THANKFUL that my employer is so understanding. I can work from home. I was already a remote employee. So, none of that changed. I can do just about everything I did before. I just can't drive to visit customers. BUT, I do have a small list of people I can pay to take me out of town. That is good. I haven't had to do this yet. My company will also hire me a driver if I need one. I am trying hard not to have to do this. So, I am really doing well with work stuff. It is the personal stuff that has been a real kicker.

I do have a very understanding partner. He picks up my medicine and will bring me dinner, if I ask. But, coordinating time for him to do things he would like to do or things he needs to do is also very difficult. We have to care for our toddler. Who, by the way, deserves the right kind of attention and care. We have a great Nanny for him. But, she is available to us while we are working...and sometimes we get a free night. MUCH APPRECIATED. But, what about duties and responsibilities as homeowners? Yard work, laundry, cooking, cleaning, building a fence? No time for that. ANd, after all the duties and responsibilities as parents and homeowners, who has time for a date?

We all need an outlet of somekind. Neither of us are getting what we need. I am sure Steve would like to play golf and I know I would love to go shopping and spend some time with my favorite spa-girl, Jen. I would even settle for 4 hours of silence on a weekend so that I can finish weeding my flowerbeds and properly clean my home.

I REALLY miss my Grandparents right now. They were two of the very best people I knew. So selfless. Maybe they spoiled me. Maybe. But, they would be here RIGHT NOW helping to make sure that we were all taken care of. They were so good at that. And, once I am back on my feet...er, behind the wheel, they will be my driving force for a future endeavour.

Purple Day-Saturday, March 26th

Purple Day is THIS Saturday!

Show you support for those of us who live everyday with this silent illness by wearing the color purple.

OhSnap! Cupcakes is featuring a special PURPLE frosted cupcake to support Epilepsy Awareness. I can't wait! (It is a lovely excuse for me to induldge in one of their fabulous cupcakes!)

I have my outfit ready and my toes are anxiously awaiting a fresh coat of Lavender nail polish.

http://purpleday.org/