Just getting started on this blog. Epilepsy is another part of my life that I have to live with every day but that few people know about or understand. I have been living with epilepsy since 1973 - after having seizures of one sort or another since 1971 when I received a head injury and skull fracture (the fracture went undiagnosed).
Yeah, I am mad - but they didn't have all the diagnostic tools and tests back then that they have today.....A concussion was a big bump on the head and they watched you to make sure you didn't have anything more serious but I don't think anybody really understood what was happening inside the head. Brain injury just wasn't considered an injury of great magnitude - unless you were bleeding a whole lot or had brain matter exposed. We know better today!
I slipped through a lot of cracks until my seizures became noticeable to others and more frequent and eventually more intense. I had no idea what was happening - I wasn't aware during the events to know that they even happened. Others had to tell me. Talk about thinking you are going crazy..........
I began to ask a lot of questions and didn't settle for the answers I was receiving. All I wanted to know was WHY........why was I having weird stuff happening to me that had never happened before? What was it all about? Why did I miss whole segments of a conversation when I was sitting right there? People accused me of not paying attention - but I thought I was. Later came the times when I would think I was waking up from a day-dream and my pants were wet because I peed myself.....how did that happen? I was still sitting there and hadn't moved - how could I not know I had to go to the bathroom? I was at work - what do I do now? As the seizures progressed over time my own children became afraid to be left alone with me.....what was this all about????????
My own family doctor could not help me find the solutions or reason so he advised me to seek a specialist. He referred me to the training hospital at the university. Even with his referral getting in there was tough. I also lived a 4 hour drive away and they always wanted me there first thing in the morning (like 7 AM), which meant my husband and I had to drive down the night before. Grandma got bonus time with the kids!
We got caught sleeping in the back of the car in the parking ramp - apparently that was a no-no even if you are clothed and married. We also got caught sleeping in the car in one of the parks close to the hospital - but the cops were a lot more understanding but a bit confused. What were we doing toward the back of the park in the dark if we were married? When we explained everything they advised us to move to a safer location near the lights.....so we got a tarp to cover our heads with so we could sleep.
To make this long story short (for this entry anyway) I received my head injury in 1971; I was not diagnosed until 1973 and then I didn't get the seizures under control and the answer to my WHY question until 1975. It is now 2012.
Thank God that I have only had one breakthrough seizure since then (a holiday weekend - ran out of meds) and I am still on those same meds (generic versions now). The dosage changes from time to time because my current family doctor listens to me and we listen to my body. When I start feeling weird, for no apparent reason, we run a blood test. I have to keep my med level on the low side of therapeutic to keep from triggering pedit mall or Deju Vue type of incidents.
Hey - this is just the beginning. I am here to testify to the fact that you can live with epilepsy......maybe it isn't always on our terms but it could be worse............I am wondering what to expect from here and what ageing and long term med use and life has in store for me.......
Feedback and insight is invited....................
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