20+ years of frustration

Well, I started writing this blog at 9am here at my home in Seaford, DE. I have fought exhaustion all day either from lack of sleep last night (3 hours tops) or from thinking about what I am going to write. It is now 3:03 pm and even though I am still exhausted, I feel like I need to get this off my chest. This is my first blog anywhere. First, I must say that although it may not seem like it, it is not my intention to whine. My intention is to tell my story in hopes that it may help others not seem so alone.

After really delving into my past, I'm not really sure where my journey with Narcolepsy with Cataplexy began. Actually I am still in the process of being diagnosed, so I might be jumping the gun but from all I am reading and what my new neurologist alluded to the other day, I have many of the classic symptoms. I apologize for this blog not just being devoted to Narcolepsy but I am 57 years old and along the way many other physical conditions have cropped up. In order to tell my story, I will include those also.

I will start with the year 1995. I had a serious car accident where I hit a tree. I sustained a right frontal lobe closed head injury, a herniated disc in the cervical spine, 6 broken ribs, a contused lung, and a severely fractured right femur. I have no recollection of the accident except waking up after it and thinking I was in a trauma center at the northern part of the state when, in fact, I was at a local hospital near the beach. I often joked, it was as if an alien came in my SUV and took over the wheel and drove me off the road. ? first episode of cataplexy. After much time spent in the acute care hospital and a physical rehabilitation hospital, I was finally discharged to my home with my two children who were 10 and 13 years of age at the time.

The next two years were fairly normal for the mother of two children who worked full time. I was able to return to my job as Assistant Director of Nursing at a local retirement facility. The first couple of months back at my job, at first seemed routine. After that, things became more difficult. I was responsible for scheduling and it became difficult for me to follow the lines on the schedule. I was also responsible for doing government mandated periodic assessments of the residents. This proved to become difficult for me also because no matter how hard I tried, I could not keep track of the due dates for all of the assessments causing the facility to get into trouble when state inspection was done. Because of those issues, I was dismissed of my position as ADON. I was put back on floor duty, which I did love because it gave me more opportunity to have closer contact with my residents/patients. During the few years that I was back on floor duty, I was often criticized by my co-workers for having a bad attitude. Due to my head injury effecting the portion of my brain that controlled emotions, impulse control and expression, it seemed like I could not communicate without people taking it the wrong way. That really was difficult to deal with because prior to the accident I was the most easy going, easy to get along with person in the world. I finally left this position because of all the hassle they were giving me about my attitude.

In 1997, after my divorce, I met someone new on line and on our first actual meeting for brunch, I was so nervous, I drank about a pot of coffee. I felt fine after brunch and on my way home about 1 mile from where I had brunch, I got the sensation that I was driving on the wrong side of the road or that the other traffic was. Sensing that something was drastically wrong, I pulled off at a McDonald's and made several failed attempts to call someone to let them know that I needed help. The next thing that I remember was waking up with a severe headache in a hospital with IV Dilantin running. I was told that I passed out at the pay phone at the McDonald's and that a nurse inside had witnessed me having a grand mal seizure and was told that I had gone into status epilepticus while in the ER. The rest of that hospitalization is all a blur except for the fact that when I was having an MRI, I experienced a vivid hallucination that I was in a desert and that my head was pinned between the horns of a cow's skull. I was maintained on Dilantin for several years in which time I did not have any seizure activity. Then I began having visual difficulties...blurry vision. My neurologist at that time thought it might be the Dilantin causing the problem and took me off of it. I was off of it for about 5 or 6 years without any seizure activity or any neurological symptoms except for very vivid dreams, so vivid that I would have to call someone to bring me back to reality. I acted on one dream in which I dreamed that I was late for work and I got up and bathed and dressed and headed to work and realized what day and time it was and that I was not scheduled to work so I came back home and when I looked, I had a uniform top on, my blue jeans, 1 sock and 2 different shoes. When I told my family doctor about this, his advice was to tie myself in bed. A lot of help that was. Also I did have difficulty sleeping most nights. Life was fairly normal thereafter except for the blurry vision which took a while to diagnose. It was determined that I have a genetic blood clotting disorder that caused a blood clot to the blood vessel that supplies the optic nerve of my right eye. Oh, just peachy,I now have a huge blind spot in my right eye. Then I was put on blood thinners for the rest of my life.

Fast forward to 2010, I at that time was working as a charge nurse at an inpatient hospice unit 25 miles from home. I began have multiple car accidents, thankfully without causing much injury to myself or hurting or killing anyone else. I believe I have had a total of 5 or 6. When I would have these accidents, I would have no recall of what had happened to cause the accidents. It was as if I just drove off the road, most of the time going to the left across the median and the other 2 lanes of the duel highway and ending up hitting trees, a parked truck or whatever was in my way. The doctor's blamed it on seizures and put me on Keppra. I had my driver's license suspended several times but at times I was able to go 6 months without an episode so I intermittantly have been able to drive. At my hospice job, I was let go because of an episode of cataplexy at work. I was tempted to give up trying to maintain employment at that time and debated on applying for disability. Being the stubborn tough nurse that I am, I didn't pursue that then.

Finally after several months, I was able to find a job as a charge nurse at a nursing home/rehab facility 2 miles from home. Ideal, right?, not so. I continue to have episodes of cataplexy, my most recent, last month on the way to a doctor's appointment. I finally said, enough is enough after becoming addicted to narcotic pain medication in order to get that precious sleep that every doctor told me that I needed. 2 nurse friends of mine at my blood thinner clinic suggested that I see a neurologist that both of them had seen who they highly recommended. I found this site while researching Narcolepsy. I am so glad that I did. I feel accepted here and it staves away some of the loneliness. On thinking back to my childhood and teenage years, I remember when my Mom fried anything, the sound would make me feel nauseated and like I was going to pass out and the only thing that relieved that feeling was taking a nap. I also recall having recurrent vivid dreams of having to cross a body of water where there wasn't a bridge and I had to drive underneath the water on a dirt path to get to the other side. I often had and have dreams of murdering people and when I was young when I was sleeping, I remember having the sensation that someone had their hand on my back. I also have had auditory, olfactory and tactile hallucinations.

My feelings now are frustration, hope, depression and loneliness. I am hopeful that this new neurologist will get to the root of the problem. I'm frustrated that it has taken this long. I am depressed because I am not fulfilling the role of care taker that I have had for all of my working career and I am lonely because most of my friends have always been co-workers who now I have very little personal contact with except over the computer. I'm lonely also because, I feel, my daughter in law doesn't trust me to have babysitting opportunities with my 2 year old grandson. I am fearful of driving that far to visit him since they live 2 hours away.

That brings me to the present. I am now jobless and impatiently waiting for Medicaid to kick in so my new doctor can schedule the appropriate testing and also waiting for Social Security disability determination to be made.

Thanks everyone for being here, listening and filling some of my lonely hours. Please keep me in your prayers that an appropriate diagnosis will be made and that I will be put on the correct treatment.

Have a great evening,