I am going on a journey of discovery. It isn’t a journey I necessarily want to go on. It is necessary. Since May 2017, I was told the ‘full-body muscle spasms’ I was going through which were, and are, so painful, weren’t really muscle spasms at all but seizures. Since that fateful five-minute conversation, the seizures have indeed changed and multiplied.
On Wednesday evening of this week until yesterday afternoon in the emergency department at the University of Kentucky Chandler Medical Hospital, I had 20 seizures. Even though I was permitted to go home, I was informed today that on Monday I am going into the Epilepsy Monitoring Unit at U.K. and am going to stay there for a few days. I will be hooked up to monitors and will be observed and recorded and as close to an accurate diagnosis is going to be made.
I am scared.
The one constant in my life other than God, is my brain. Now, my brain seems like it simply doesn’t want to remain with me. There is also a possibility all the pain is causing problems. According to some research I’ve done on my own because of something one of the doctors said, intense pain can cause the body/brain to develop seizure activity because the body simply can’t keep up with the amount of pain it is undergoing.
This frightens me.
An average day of pain for me is at an 8 on the pain scale. It has dropped dramatically since the pain regimen began. For a wonderful amount of time, the pain dropped to zero or hung around at a 4. Those were wonderful days, weeks. Even months. I knew the pain relief would decrease as my body adjusted to the dosage of the pain medicine, but I never would’ve thought in a million, two million years I would develop seizures!
So, to remain calm through all this change and strangeness, I am going to keep a daily journal and I am sharing it here on my blog because I need to know people other than my family are reading my story. It doesn’t matter if you care, merely that you read it and can at least connect to me as a human being.
Along with the public blog/journal, I am going to, of course, keep up with my paper diary and write my short-stories, etc. Reading is a big part of this ‘calming’ attempt; listening to audio books and music, and playing video games is the other release.
Why is this sharing so important you ask? Because sometimes it’s important someone other than family and friends know what’s going on with you. Sometimes it’s easier to share with strangers because they don’t have previous knowledge of you and your troubles. Sometimes a larger group helps shoulder the burden, worry you’re going through. And, sometimes, when all this happens, you learn something about yourself you didn’t know. It is this learning phase, in part, that’s prompting me to do this sharing.
For example, Thursday, July 20th, I had 20 seizures. They were of two types mostly, but they seem to be evolving. The 20 seizures happened within a 24-hour period and exhausted me. I went to the ER and Sniffles went with me. Once we got off the bus, there were two seizures on the street and she had to drive the wheelchair. In the ER, there were more seizures and one just before my blood was drawn. That day I had two doses of Adavan. One helped and one didn’t. Not really.
Monday, I go into the Epilepsy Monitoring Unit where I’m going to be hooked up all over my head with E.E.G. leads and an E.K.G. to keep track of what is going on. Since I can trigger two of the seizure types, they are looking for me to do just that. This means I get to take my X-Box with me and play games, and my laptop to do some writing because the doctors want to observe me having as normal a day as possible. I figure the boredom of being in the hospital will encourage me to write and finish the pieces I’ve begun and order/organize them in how I want them to appear in the finished product.
Besides working, having the laptop will let me video-chat with my sisters. We are all in different parts of the country, and this will permit us to actually see each other “with our own eyeballs” as we like to say.
Very rarely have I looked forward to a hospital stay. This one, however, I am. I need answers. I need this problem to be corrected if possible. Plus, if there is good news in the fact the hemiplegic migraines have currently stopped. Could this be a progression of them?