Travel Concerns

Just got back from a business trip. I always seem to dread those lately as I seem to suffer at times from some anxiety. Typically it will hit me on the airplane or in the hotel room at night. I am sure some of that is just from past history.

This particular trip had me speaking in a room full of techy people. I thought my heart would jump out of my chest, I would pass out, or have a seizure. Sometimes my auras or seizures cause anxiety so when I am nervous about something else then it gives the illusion that I may also be starting to have a seizure, when in reality I am probably just entering panick mode. Either way, it's not pleasant!

I met many people today that have children with Epilepsy. I still to this day have a hard time listening to the stories told by parents of children with Epilepsy. It also makes me wonder how my own mother tells my story to others. Since I was so much older when I started having seizures I do not think that her thoughts or feelings are quite the same as the parents who have young children suffering from epilepsy. But now that I am a mother myself, I know that your children will always be your children as my mom always says, even when they are adults. Either way, it is a painful experience to watch a child suffer and to not really have any control over the situation.

Most of the people that come to the support group here locally are adults with seizures, so I do not meet as many parents with younger children who have seizures. It's a big eye opener and a reminder of how precious little ones are and how fragile the situation can be.

I am also meeting more and more people who have had brain surgery. It seems that that is turning out to be a pretty significant solution for some people with seizures. A friend of mine who in earlier years was a possible surgical candidate held off on any type of radical treatment so that he could raise his family and ensure that he was around for them. Now that his children are older he decided to "take the plunge" so to speak, and he had brain surgery a year ago. He has only had once seizure since surgery.

I met another younger girl today who had surgery as well, back in January I believe she said. She has had no seizures since surgery.

Another parent had a young child who had the connection between the two hemispheres removed and that seemed to help with her seizure frequency.

I think the thought of some type of brain surgery is daunting, but should be explored by anyone who is a potential surgical candidate. I think everyone owes it to themself to look into that if it can improve the quality of their life. I see too many people, especially adults, who have become "satisfied" with their seizure control when in reality they don't have "seizure control". Their seizures are out of control, unpredictable, yet they're too scared to make changes to medication or explore other options. I say, "what kind of a life is that?"... always living on the edge, never knowing when the next one is going to hit. Wouldn't it be better to strive to be 100% seizure free if you have the opportunity to do so? Read more!

Doing the right thing...

There are times in life when things come up and you just know deep down what the right thing to do is, even though the decision is a difficult one to say out loud.

I just turned down a great job opportunity because I felt like the right thing to do at this point in my life is to stay anchored in Nebraska.

A few weeks ago, I was having lunch with two friends. One of them has been going through a difficult time with her family. And she joked at one point, "I feel like standing up and shouting...I'm not going to play this game anymore." Of course the game was "her life".

There are many evenings when I am exhausted and I think to myself, I don't want to do this either. And it's not a matter of living the life that I have but more a matter of living with or accepting the pressures that come with one's busy life. Day after day of what can sometimes feel like endless monotony.

I had the opportunity to leave the state and go somewhere new and exciting, but I have passed on that opportunity in order to raise my two beautiful children in a place where they have full access to a wonderful extended family with cousins and two sets of adoring grandparents. It's the right thing to do. It's so obvious and yet I am feeling melancholy.

Sometimes I think that my life is no longer my own. Instead, it is dictated by doctor appointments and work commitments, etc. Today at work I was sitting at my desk and I had felt odd most of the morning. I kept wondering if I was going to have a heart attack, a stroke, or just plain pass out and have a grand mal seizure. I even thought at one point, "whose office should I go to?" "Who would most likely call 911 and not panick if I needed assistance?"

It's ridiculous that I have to think about these things. I know there are people with seizures out there that have these fears and have auras like mine, where they feel their whole world is caving in on them. I wondered today, as I felt that my mind was not part of my body at times, "what is happening to me"?

Auras are a terrible nasty thing. I am so thankful that I have not had a complex partial or tonic clonic seizure for years, but the feelings that overcome you when you have temporal lobe epilepsy and auras of this type are so surreal to me. It is like having an out of body experience. These are the types of auras I tried to describe to the neurologists when I first started having seizures. They must have thought I was crazy. I was diagnosed with panic attacks and given Ativan and sent on my merry way. Only to be more calm (due to the Ativan) when I continued to have the auras and eventually full seizures.

I would love to meet someone who doesn't feel a panic attack coming on when they are having an aura that is making them feel as if their whole world is coming to an end and when hanging onto reality is difficult and a chore.

I sat through meetings today and an office conversation with a co-worker the other day, when she was fretting about a wedding that she was going to attend. Not a single person knew that I was experiencing an aura. It gets easier to hide as the years go on. I know that the feeling will not last long and it will be over soon. It's best to remain calm.

I am up late again tonight and I know that has been my problem lately... not enough sleep :) Read more!

"Unknown Cause"

I remember several years ago reading that in 80% of cases of people who have Epilepsy there is an "unknown cause". I remember thinking it was just ridiculous. How could only 20% of people with seizures know what was causing them and the other 80% be in the dark?

Last night, at a support group meeting, a mother of young boy with seizures asked me if it bothered me not knowing the cause of the seizures. I had not really been asked that before, but had thought about it and internalized it a lot over the years... wishing I was in the 20%. She asked if one would feel better knowing what was causing it.

There was a 3 to 4 year period of time after my diagnosis when I wondered what was causing them or what had happened to start them. I remember my mother asking the doctor in the hospital if "she" had caused it when I was born. Did she do something as a mother or did she do something during pregnancy or at birth that harmed me in any way. I was devastated to hear her ask the question. How could she possibly think this. I found it especially hard when her "baby" was sitting right in front of her and age 30 now.

The woman at the support group got me to thinking about things again last night. Does it bother me not to know the cause of the seizures? And I guess, truly, the answer is "yes". But I have gotten past that in my life. I have found a way to accept the situation. I have blindly accepted the situation without any hard evidence that points to any one thing in particular.

One of my first neurologists was such a strange man. Brilliant.. but strange. The best thing he ever did for me was to tell me to "move on... stop dwelling on things". I would bring him studies and information that I had found on the internet each time I'd have an appointment with him. I was looking at everything I could find that would tell me why I started to have seizures at the age of 30 out of the blue. It was upsetting to me at the time and everything I read led me in hundreds of different directions. He finally just said, "stop.. stop it right now... stop reading, stop looking.. and start accepting." It was hard to hear, but it was the best advice.

Every time I have an MRI I have a twinge of hope that maybe the technology has changed from last year to this year and the imaging will find something that has been there all along but has never been seen before. Each time, it fails to find anything significant or related to my seizures. When they first discovered the pituitary tumor in 2005, I felt a huge sense of relief. If that could be removed then the seizures would be gone. But the pituitary tumor is not the cause of the seizures and is unrelated.

I sympathize with people who are still struggling to find answers. I don't think you should ever give up trying to find all the pieces to the puzzle, but along the way you at some point need to also learn how to cope and how to accept things so that you can move on. I meet so many people that are so bitter and so upset and so angry. And these are people who have had seizures for years and years, sometimes 30 or 40 years. To live with that kind of bitterness for so long is not good.

My husband, having had a brain injury at a young age, also learned acceptance. And his family, along with him, had to learn that this is who he is now. There is a pre-TBI person or memory that some people have and then there is who he is today. What that person has and who they are will always be there, but what has happened to them and how they evolve because of it is what is important. Read more!

Vulnerability...

A couple of weeks ago I came down with strep throat. My ears were aching and I finally gave in and went to the doctor. I walked out with a prescription for Azithromycin. The first night I took it, I was up all night. I did not feel well and had many episodes of tremors and that terrible sense of doom. That is what my aura feels like most of the time... doom. Sometimes it catches me off guard if it has been awhile since I've had an aura or seizure. That night I was just off and not feeling quite right and could not sleep.

I continued to take the medication because I thought I had taken it before for something. The next day I was tired but got through the day. Two days after my sleepless night I woke up in the morning and was trying to get ready for a business trip that I was due to fly out for that morning. My arms were tremoring so bad at times that it was difficult to get ready. And the sense of doom overcame me once again.

I decided to lie down for awhile. My husband came upstairs and found me in bed where he saw me tremor and shake. He has not really seen me have a bad seizure, as most of my seizures are simple partial seizures and many times not noticeable by most people. But these were more active and uncomfortable. He had a worried look on his face and wondered if I was having a stroke or heart attack. He kept saying "our kids need a mother". That in itself freaked me out a little as I've never quite seen him look so worried before. But because I was feeling so awful at that time I did not resist when he wanted to take me to the emergency room.

In the ER I actually got a doctor that was familiar enough with seizures that he even asked me if I had simple partial seizures or if they were more severe, like a grand mal or tonic clonic seizure. I was impressed, as most doctors don't even speak the terminology. I felt at ease immediately and he had different blood work done and checked my heart just to make sure it was not anything more serious.

The next day I stayed home from work and worked from my home office. I was not feeling 100% confident in driving into work or sitting through the day. My co-workers have been wonderful all of these years when I have had seizure issues, but I just was not feeling 100% normal.

I spent two days working from home and the seizures started to subside. When I finally went to work, walking through the parking garage that first evening back, I suddenly realized why I was so bothered by something that I should be used to by now. It's that terrible feeling of "vulnerability" that you have when you experience times when your seizures are more active or you're not feeling 100% in control. I do not like not having control of a situation. Epilepsy at times has taken the control away from me and it's not fair. I sat in my parked car for awhile thinking about things. For the first time in a few years I was feeling sorry for myself.

With two kids and a husband the stakes are high if something happens to me and I can no longer work or can no longer function at the same capacity that I am currently handling. The stress of that weighs on my every day. My seizures for the most part are pretty controlled by medication, but there are times like this when my seizure threshold is lowered and I get a flashback of what my life was like the first 3 to 4 years that I started having seizures. I was married to a man who left me because he did not "sign up for this". "This" being Epilepsy. My second husband has signed up for it knowingly and my kids have had no choice in the matter. But it's still not fair. It's not fair to them or to me, but that is how life has played out for us.

A few days ago I sat in on a family panel made up of other family members of people who have had brain injuries. My husband suffered from a traumatic brain injury at age 17. I was the only spouse on the panel. Everyone else was a parent of a brain injury survivor. My perspective is different. I married someone knowing that they have had a brain injury and my husband married someone knowing that they had Epilepsy. Life is such a hard thing to figure out. I listened to the other families stories and I found it hard to hear the details of the accidents and injuries. It just tugs at me. But that day, sitting on the panel, was a day that was meant to be. It worked out perfectly with what had happened to me the previous week with more active seizures. You can sit and think hard about what has happened to you and let it define you, or you can take what has happenend to you and embrace it and see what you can make of it. It is not the events that define who you are, it truly is what you do with that information or that experience that makes you the person you are.

People have choices every day. I did not choose to have Epilepsy, but because it chose me, I have taken it and done with it what I can. I have those moments of vulnerability that make me realize how precious life really is and how often people take their health for granted. I was one of those people. Read more!

Life Lessons...

I am sitting in the Denver airport waiting to catch a flight back home. I had a sudden urge to write today but have just now been able to fire up my laptop.

For some reason I feel like I had some type of epiphany these past few days. Even 12 years after diagnosis I continually ask myself "why me?" or "why this?". Of all the things that someone can get, why would I have epilepsy? And then something happened last night that for whatever reason made me come to the realization that I may never understand why I started having seizures but I think now I do understand what the seizures and experience has done for me. And that realization is that epilepsy has in some ways made my life more meaningful.

I came to this realization when I was on a business trip this week. I went to dinner with one of the clients last night at a restaurant that I would have never been to if it had not been for my work in California. I was in Nevada City, a small town located east of Sacramento. The town is small and my only connection with it is that clients reside in the area.

At dinner my client told me about a friend's daughter who was in UC Davis Hospital in Sacramento. She had gone in for some stomach issues but while she was in the hospital was experiencing "seizures". The doctors were calling them "non-seizures" because they hooked her daughter up to an EEG and recorded no seizure during a time when she was not having the "episodes" that had started plaguing her out of the blue. They felt that her body was reacting to pain she was experiencing elsewhere so they did not consider them as seizures.

My client knew that I had epilepsy and she asked me questions about my seizures and about my journey to diagnosis. Our subject matter eventually turned to other things as we continued to talk.

A gentleman approached our table and said that he had overheard our conversation partially and wanted to know how my seizures were. He seemed concerned and very genuine, so I told him that I had been fine and that things were fairly controlled for the most part. He said, "I just wanted to see how you are doing." It was truly one of the sweetest things a total stranger has ever said to me..."how are you doing?"

This gentleman was a doctor from UC Davis in Sacramento. He was a professor and held a PhD in research in Epilepsy. He gave my friend two epileptologists' names and bid us farewell. My client had a voice message come on her phone while the gentleman talked to us. It was her friend calling, the woman whose daughter was having seizures in the Sacramento hospital. My client called her friend as we drove back to the office. Her daughter had been discharged from the hospital but had a "non-seizure" in the car on the way home. After the two of them hung up my client continued to voice her concern about her friend's daughter. As we talked about different things that happen to people who have seizures, I mentioned to her that some of the doctors that I saw in St. Paul when I was hospitalized early on, felt that I had possibly had viral meningitus the December before my seizures began. I had never had a spinal tap so I could never go back and confirm either way. My client had a look on her face that I cannot describe. She then told me that her friend's daughter had just had viral meningitus in December this past year.

So I ask myself... is this coincidence or fate? I had a melancholy feeling as I drove back to my hotel last night.

My mother called me this morning and woke me up at 6 AM California time, not realizing that I was travelling on business and not in the same time zone as her. She told me about a woman that she had met whose son was having seizures. She wanted her to come to the support group. And for the first time in years, I heard my mother weep. She said that the conversation with the other woman reminded her of me. She said to me that the woman never gave up on her son and was a fighter.

This morning I saw my client. I told her to have her friend follow her "motherly instinct" and to fight for her child. To challenge the doctors if she needed to. She knew her daughter best and knew her daughter's behaviors and mannerisms better than anyone else. If the non-seizures were actually seizures, then fight for her.

So this is how I came to the realization that everyone can be connected in some way or another and my connection with so many interesting and wonderful people has been because of my seizures. So, what has epilepsy done for me? It has made my life more meaningful, for better or worse. Read more!

Nebraska Epilepsy Walk

Dale and I will be participating in the first Lincoln Epilepsy Walk which will be held indoors at Westfield Gateway Mall on March 27, 2010. I am posting this information so that people can view my page with information about this event. We would be thrilled if you would join us for the walk here in Lincoln so that we can have a great turnout!

Information about either sponsoring, donating, or joining our "team" can be found on this page:

http://efa.convio.net/site/TR/Walk/walk?px=1357942&pg=personal&fr_id=1870

Thanks so much to all of our friends and family who have supported us over the years in all of our efforts in raising awareness for Epilepsy and Traumatic Brain Injury. This will be the first time that Dale and I will truly be able to join together in celebrating both causes at one event, so we would love to have a big turnout for Lincoln. Read more!

Compelling Story...

I always have to chuckle a little when I access my blog to post. It says "has a compelling story to tell..." I never wrote that, so it is someone's opinion. And I do appreciate the "compelling" part, but my "story" or experiences are like thousands of other people who have Epilepsy. The only difference is that I do not mind talking or writing about it. Many people have far more compelling stories than I.

I am up late tonight with a sleepless infant and now I am wide awake as if it's time to go to work and yet it's only 2 AM. If the gym were open 24 hours, I would go there. I would be so skinny if the gym were open 24 hours a day. That way, whether the baby is up at midnight or at 2 AM I could jump in the car, drive 5 minutes, and be on a treadmill. Just think of how healthy I'd be!

But the truth is, I am sitting here at my keyboard trying to get caught up on work and also some loose ends that have been plaguing me around the house. And in the back of my mind I am wondering how long I'll be able to stay up tonight without causing issues for me tomorrow.

I know I am not the only mother who has epilepsy who is up tonight with an unhappy baby. Perhaps we should start a newsgroup or blog just for those late night moments when motherhood seems so impossible with juggling it all and surviving from day to day.

My husband is wonderful. But even after having known me for 4 years, I still don't think he truly grasps the issues that I have when I am not able to sleep fully through the night. I cannot even remember the last time that I have slept more than 2 hours in a row or been able to sleep for more than 5 or 6 hours a night. And although I'm not the only one that gets up with the kids late at night, I am still always wide awake when I hear them and I watch him glide into one of their rooms to tend to them.

For the most part, we try to do things 50/50, but with the baby it does seem at times that he more often than I end up in the room comforting him or rocking him back to sleep.

I do not know how to explain to him how my brain feels at this hour. How do you tell someone that your brain feels like it's falling apart (literally). At times, I have felt like I am barely hanging onto reality because I am so tired. The funny thing is.. I don't necessarily feel physically tired. It's just my brain. My brain is just tired. It is not my body, but my brain that is craving sleep. How does one explain that to someone who does not have seizures?

I did manage to make it to the gym last night. And as I was on the treadmill there were a few moments that I felt I had missed... perhaps it was just seconds. It caught me off guard at first. I am still unsure if it was a simple partial seizure like I have had in the past or if it's truly just a side effect of a sleep deprived brain. Perhaps the mom next to me on the treadmill was doing the same thing, but she wasn't having seizures.

It is very difficult at times with simple partial seizures to tell if you are having an aura, having a full blown seizure, or in my case the past few days, just plain tired.

I received an email from someone this evening. She has had seizures for years, but did not know that they were seizures until she was officially diagnosed several years ago. I get the impression that she feels that because she wasn't diagnosed until more recently that those other years of suffering "do not count". I just spent 15 minutes mulling over her email and sending her a reply back, telling her that it doesn't matter how long you have had seizures or to what severity your seizures are, you just cannot compare yourself to other people who have Epilepsy and say that yours are better or worse than theirs. You just cannot think of it like that. My husband taught me that. With him having had a brain injury, we have a lot of contact with other people who have had brain injuries. Every single brain injury and how a person handles that brain injury will differ. The same is true with Epilepsy I have found.

I remember thinking, when I met my husband and learned of his TBI, how awful. This person has suffered way more than I can ever imagine. I had a hard time coming to terms with what he had gone through, even though I did not know him during that period in his life. And then one day he said that everyone has something that is their life struggle or their one thing that was a major life event for them. For him it was his TBI. It was life changing. For me, it was my Epilepsy. It too was life altering.

My Epilepsy has taken a backseat to my children. And I have to say, thank goodness for that! Another life changing event came the day we were handed our daughter in China. My third life changing event came the day that we were handed our son in Ethiopia. Those are life altering events that I want to remember.

At our monthly support group meeting I may see 5-10 people, all with seizures. I know each of their stories and I do not think of their seizure stories as being any worse or better than the next person. What I see in these people are strong people who are resilient who have dealt with what they were given. And I have met many people over the years who have also not dealt with what they were given just yet or possibly just not accepted what has happened.

I spent the first 3-4 years after diagnosis always wondering "why". Why did this happen? what did I do to cause these seizures to come on? And then one day my neurologist said, "you need to move on now...". I still often wonder why and what is causing this. I fall into the "unknown" category when it comes to what the cause of my seizures are. Last I heard 80% of cases fall into an "unknown" cause. That's a huge percentage in my mind. So are those other 80% blogging tonight somewhere, wondering why they started having seizures? I hope not. I hope they're letting their brains rest and are getting a much deserved night of sleep! Read more!