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!

Always a person with Epilepsy

I have a dear friend who coincidentally had seizures earlier in her life. I never knew that she had them until I started having seizures. And then one day she decided it was okay to talk about it.

When she was in college she started having seizures. When she went to the neurologist he asked her if she had a history of seizures. She said "NO" and at the same time, her mother, who had accompanied her to the doctor's visit, said "YES".

My friend was shocked. She had no idea she had seizures as a young child. Her parents had never told her! Looking back now, she remembers a few incidents which were never explained to her in her youth. College brought on the "perfect storm" for her, with stress and sometimes a lack of sleep. She went on medication and her seizures became controlled.

Her seizures were held at bay for quite some time and then years later her neurologist allowed her to go off of medication. For the past 10+ years now she has been off medication and seizure-free. But somtimes I wonder... are we really ever "seizure-free" entirely?

Over these past years she has had moments that she and I both describe as "brain pain", where you have a sharp head pain. She has had times where her face appeared to droop, as if she were having a stroke. Not everything has been perfect, but she has been able to live without medication and in a somewhat "seizure-free" world.

That has all changed now, as her seizures have surfaced once more and she is now awaiting an appointment with the Epileptologist's office in Omaha. In her and my mind, it cannot come soon enough. We know she will have a consultation, and then probably be referred for an MRI and EEG testing. It has been years since she has had either. We know that the conversation will inevitably come up regarding medication or going back on medication. I think she has had enough seizure activity these past few weeks that she is ready to accept that route if that is where testing and consultation leads her.

My husband and I recently met a young man in his 30's who had a stroke about 18 months ago. You wouldn't know it, as he is strong and young and healthy. You wouldn't suspect that he was hospitalized for a long period of time, learning to walk/talk and rehab. In a conversation with him, I asked him if he was on any medication since his stroke. He is only on one and it is a cholesterol medication. He said he "fought hard" to not be on meds.

I remember when I first started medication. It was Tegretol and I was miserable. I remember dreading taking medication. I kept thinking of the medication bottles that adorned the dining room table at my grandparent's house. Who wants to take medication if they don't have to? I hesitated at taking aspirin. I would suffer through a day or two headache without taking anything just because I wanted to get through it without the aid of medication... even an aspirin.

My body was so overtaken by seizures that I finally gave in as well and have lived a life with anticonvulsants and medication changes over the years. I hope that one day I can be medication free, but in the meantime I am enjoying my "seizure-free" moments and relishing every day that goes by when I do not have to think about the fear of a seizure.

Medication is a huge topic at our monthly support group. It is a concern for everyone no matter what age the patient. Read more!

11 years later and still full of worries...

It has been 11 years since my first seizure and I still think about Epilepsy every day. Seizure control has been good lately so it's not tugging at me constantly, but of course every time I pop one of my epilepsy meds into my mouth I am reminded of the worrying that has nagged me for the past 11 years.

I am out of town on business this week and have 3 more days to go. I had my first seizure experience in a hotel room 11 years ago. It was the scariest thing I have ever gone through and every time I am alone in a hotel room at night by myself I think about that event. It was life altering.

Sometimes I worry about it. I worry that I'll be in this hotel room in a foreign city with no family around. I worry that I will have a significant seizure and that I will not awake in the morning.

My husband was here with me for the first few days, enjoying the sightseeing. My sense of security was gone the day he left and the first evening I was alone here. I am a believer of what is meant to happen will happen and that I will accept things when they come and do the best that I can with the experiences that I have in my life. That all makes sense to me logically, but I don't want to be alone when the big one hits. That is my greatest fear... that my seizures will worsen, that I will lose consciousness and no one will wonder where I am and that I will be in a city with no family around. Because that is exactly what happened 11 years ago.

For people who tend to mostly have simple partial or complex partial seizures, you tend to remember your seizures. Remembering those fears and auras that accompany them can be frightening. I meet a lot of carefree individuals that experience tonic clonic or grand mal seizures. They have no recollection of what has occurred, but of course those surrounding them during a seizure recall every moment of it. If everyone who had Epilepsy had the memory of the seizure event I do not think that I would meet as many people who are careless with taking medication or who self-medicate and take anticonvulsants as if it were aspirin and only medicate if they feel they may have a seizure.

I have met many people who have for years suffered partial seizures or auras and were undiagnosed. Most people have lived with it and just assumed it was "normal"... so much so, that they never even mentioned it to parents while they were growing up. It always comes as such a relief to most people when they are finally diagnosed, even if the diagnosis can be frightening. Having your odd feelings vindicated is a wonderful thing regardless of the long term diagnosis. Once you know what you are dealing with the better equipped you are to handle it. Read more!

Calcium and the Parathyroid

I had no idea that we all have a thing called a Parathyroid until last Fall, when I was told that my blood work came back with high calcium, low vitamin D, and too high of Parathyroid Hormone as well.

It seems that both my pituitary tumor and parathyroid tumor were found as a result of something else being checked. I think of it as bad luck, but perhaps in the end it is good luck that something led to something else and things can be monitored and cared for like they should be.

I wrote at one point about having issues last Fall and being monitored for one week at UNMC's 24 hour EEG/Video monitoring unit. I had been having unusual or out of the ordinary seizures for me. Things were different this time with these breakthrough partial seizures. The monitoring took place and although I had an abnormal EEG I did not have any seizures while I was being monitored.

I continued to have "odd" feelings and things that I felt were like my simple partial seizures or auras like I had had before. Follow up blood work after my hospitalization indicated that my calcium level was continuing to climb. The endocrinologist scheduled my Sestamibi scan, which revealed the tumor on one of my parathyroid glands. I had a follow up ultrasound on my neck as well. This was to check another item that was showing up on the scan. It was an unidentifiable thing.

Surgery was scheduled to remove the Parathyroid and the unidentifiable item for February. Unfortunately, my new little boy from Ethiopia came down with Hepatitis A and was admitted into the hospital for 4 days! Because of my exposure to his active Hepatitis, my surgery had to be postponed for 3 months.

I had surgery 3 weeks ago and am finally feeling pretty "normal". I can only say that if you know of someone or if you yourself have a parathyroid tumor and/or high calcium, that once that is removed and things are regulated, you will feel like a different person. My bones had been aching, literally aching, since at least April of 2008. I remember noticing it, because I had just turned 40 and I thought maybe I was getting arthritis or something. I was so achy. I told my husband that every morning when I woke up it felt like I had been hit by a truck. It was six months later that the calcium blood work revealed the high levels. The tumor was diagnosed in January I believe, and then surgery was in May.

The neck surgeon removed the parathyroid gland/tumor and a lymph node. The surgery itself was not too bad. I noticed in the recovery room as I was waking up that I did not feel achy anymore. I could not believe how quickly I felt the difference. And now 3 weeks later I feel 10 pounds lighter (even though I literally have lost no weight!). My bones felt that heavy and it felt like such an effort to do anything.

I have read on the internet that some people call the parathyroid tumors and high calcium "moans, groans, and psychiatric overtones". I think this is so fitting. And I also believe that some of the things I was feeling emotionally and psychologically and neurologically were all due to high calcium.

The surgery has certainly not taken my Epilepsy away, but it has had those "odd" feelings that I was having back in the Fall go away. I have had no auras or any type of seizure activity since the surgery.

When you have simple partial seizures, it is very difficult at times to differentiate between a seizure and other times when you're just feeling "off" or "odd". I think I had a little of both going on last Fall when I was monitored. I was also suffering from side effects of my Epilepsy drug, Lamictal. I thought I was having myoclonic jerks at night, but once I was taken off all medication in the hospital, the jerking that I did at night went away. It has not come back since I've had the lowered dose. Read more!