tag:blogger.com,1999:blog-13702622703483617182024-03-08T03:57:38.584-06:00Epilepsy... On My TermsLiving with Epilepsy and defining my own life.Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-1370262270348361718.post-85839934094542831632010-11-06T22:31:00.004-05:002010-11-06T22:44:21.181-05:00Travel ConcernsJust 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.Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-91421337800249744782010-09-21T23:30:00.003-05:002010-09-21T23:48:07.470-05:00Doing 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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-10618902156636978732010-09-15T22:37:00.003-05:002010-09-15T22:52:44.070-05:00"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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-37912891088072285482010-08-11T21:42:00.003-05:002010-08-11T22:02:46.476-05:00Vulnerability...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 guardMichelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com3tag:blogger.com,1999:blog-1370262270348361718.post-10868941504960983852010-03-05T20:13:00.004-06:002010-03-16T10:09:23.602-05:00Life 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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com1tag:blogger.com,1999:blog-1370262270348361718.post-31651830770376433642010-01-22T14:09:00.001-06:002010-01-22T14:11:45.257-06:00Nebraska Epilepsy WalkDale 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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com3tag:blogger.com,1999:blog-1370262270348361718.post-22255433026468751272009-09-04T02:09:00.004-05:002009-12-29T10:46:29.492-06:00Compelling 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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com4tag:blogger.com,1999:blog-1370262270348361718.post-3815351726097458172009-08-10T11:57:00.004-05:002009-08-10T12:17:31.577-05:00Always a person with EpilepsyI 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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-6178484288836756872009-06-09T13:45:00.005-05:002009-06-09T14:00:41.540-05:0011 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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-1971200058441445582009-05-27T12:59:00.004-05:002009-05-27T15:57:43.120-05:00Calcium and the ParathyroidI 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 Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com1tag:blogger.com,1999:blog-1370262270348361718.post-6154068623968770592009-02-15T22:09:00.002-06:002009-02-15T22:15:25.046-06:00Nebraska Epilepsy Walk - March 28, 2009I am posting some information from one of the other Nebraska volunteers who is heading up a Walk at the Crossroads Mall up in Omaha...The National Walk for Epilepsy is taking place in Washington DC on March 28th. We have decided to make an "alternative route" here in Omaha. On March 28th from 9:30am - 11:00am inside Crossroads Mall (South Entrance) we will be holding the walk. Walkers Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-55900815796816168692009-02-15T21:43:00.002-06:002009-02-15T22:09:00.997-06:00High calcium...Since my hospitalization in the Fall, I have continued to stay on a very low dose of Lamictal and have been doing fairly well. I was confused when I left the hospital because I felt like I had auras and things going on but yet some of those "episodes" did not record as seizures.When I was having issues prior to the hospitalization I went to an endocrinologist because I initially thought that I Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-43343388192272518592008-10-20T19:11:00.002-05:002008-10-20T20:08:09.278-05:0024 Hour EEG/Video MonitoringI was in the hospital for a week several weeks ago. I spent 7 days hooked up to EEG and Video monitoring at the University of Nebraska Medical Center. For those of you who have not had the pleasure of doing this, it is quite the experience. I believe I have an earlier post on the blog about my first stay at a hospital with EEG/Video monitoring, which was 10 years ago.I have been struggling with Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-4770911008714593102008-08-20T12:28:00.008-05:002008-08-20T12:50:23.076-05:00Insurance bluesMy seizures continue to come, even with the medication adjustment. I am waiting for a call from my neurologist as I write this. It seemed at first that the increased dose had controlled them. The increase has definitely made them more mild.I found out the hard way, that my medication is now available in a generic form. Lamictal has always only had the brand name available. My insurance Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-90390399130890247952008-08-12T11:52:00.013-05:002008-08-12T12:27:39.740-05:00Seizures again...After almost a year of feeling "almost" seizure-free, I had a setback. About two months ago I started having issues with my seizures again. I thought I would describe some of them, because I think it's helpful sometimes for people to read what other people's seizures are like. This sometimes help validate your own seizures, auras, and feelings you also may go through when experiencing simple Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com2tag:blogger.com,1999:blog-1370262270348361718.post-43068113668909164312008-04-18T15:03:00.009-05:002008-07-23T12:45:28.940-05:00Family tiesI have hesitated for awhile now to post this entry, but because it has been on my mind again lately, I have decided that posting it may help others who have experienced a similar situation.I have mentioned in the past how supportive my family has been over the years. I could not have made it through those rough times without them. For the most part, I feel that they have educated themselves on Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-19201884160848214352008-02-06T11:59:00.000-06:002008-02-06T12:18:00.655-06:00International Adoption and EpilepsyI have mentioned in a previous post that my husband and I adopted a little girl from China. We brought her home in July of this past year. We have already started looking into a second adoption, knowing that adoptions can take awhile. We also needed to research new agencies this time around because we would not qualify for China anymore and our last agency only handled Chinese adoptions.We do Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com5tag:blogger.com,1999:blog-1370262270348361718.post-52204553592340378502007-12-28T12:51:00.000-06:002007-12-28T13:32:55.690-06:00Medication overload!I thought it would be appropriate to make an entry about a little mishap that I had last night. I always hear stories of people who have forgotten to take their medication. I have also heard from people who try to play catch-up if they have forgotten to take their medication for several days up to a week! All of these things pointing to a possible disastrous outcome.Last night, my head was Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-25209321469332930422007-10-09T14:11:00.000-05:002007-10-21T14:43:26.581-05:00Prescription woes...At the support group meetings I hear about prescription issues all of the time. Many of the people I have met do not have insurance coverage, or have inadequate prescription coverage. Some people cannot work full time so they are not able to keep benefits, and then have the issue of having to pay out of pocket for their medication. I have been lucky enough to be able to work full time and keep Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-37727964449485315342007-10-01T12:14:00.000-05:002007-10-02T12:08:42.693-05:00Off days...I thought I'd post today because I am feeling a little "off". In the earlier days of my diagnosis, I felt "sick". The medications would often make me sick. When I was on Tegretol I felt sick all of the time. Sometimes taking a big glass of milk with my meds helped to ease my stomach. Otherwise, I just got through each day and tried to eat what I could. My gums bled, my hair fell out, my balance Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-45800904226668003912007-09-24T14:59:00.000-05:002007-09-26T14:25:00.810-05:00Epilepsy and adoptionIt has been 9 years since my diagnosis. Looking back now, I have no regrets and no anger about what has happened. That does not mean that it has been an easy journey. Everyone handles their diagnosis of an illness differently. Everyone has to come to terms with what they are dealing with and manage it in the best way possible in their own amount of time. What I have found over the years, inMichelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com6tag:blogger.com,1999:blog-1370262270348361718.post-71617571059246171712007-05-14T15:31:00.000-05:002007-05-14T16:18:58.956-05:00A seizure disorder diagnosedDuring those six months prior to diagnosis, the episodes that I experienced evolved and took on a life of their own. The funny taste in my mouth did not always come, but I almost always felt like I was going to pass out or that my head would drop if I did not fight to keep it upright. As time went on and emergency trips revealed nothing, these moments of odd feelings turned into things that Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-53719131617824704112007-05-09T11:52:00.000-05:002007-05-14T15:30:33.405-05:00The evolution of a seizure disorderOnce I was back in Nebraska and working it seemed as though those odd episodes that I had been having had subsided. I went to work daily and spent many hours at the office since I did not have a spouse to go home to. Work consumed my time and I was happy to pass the days quickly hoping that at some point I would receive a phone call from my husband telling me where we would be moving next. I was Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-46485521475452820792007-05-07T13:15:00.000-05:002007-05-09T11:52:16.749-05:00My journey to diagnosisSince my first experience with what I now know was a series of seizures, I have met so many people who have told me stories of their own struggles to find a diagnosis. What I have learned these past 9 years is that I am one of the lucky ones, to have been diagnosed as quickly as I was. It took six months or more before I was "officially" diagnosed with a seizure disorder. Shortly after that the Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0tag:blogger.com,1999:blog-1370262270348361718.post-80890438686300272572007-04-15T20:24:00.000-05:002007-04-18T16:42:51.907-05:00My first trip to the ERAt the time, I had no idea that this would be the first of many trips to the emergency room. The ambulance ride was somewhat uneventful, as it seemed to go quickly and I felt more at ease just knowing that someone was with me. I kept thinking to myself, am I dying? did I have a stroke? What will my husband say?I was married in September of 1997. So I was a fairly new bride still. All of these Michelehttp://www.blogger.com/profile/13245191755233795428noreply@blogger.com0