Monday, November 26, 2018

Half a Year

I haven't posted here in quite a while and generally that's a good sign. I was up quite early this morning with two airport departures and the 6:30 AM arrival of the painters of our home's exterior. I decided I would write something today and that I should note how long it has been since Michael's last lengthy early morning tonic seizure. I referred to our archaic method of documentation- a simple hand-held size yearly calendar. I turned back pages, many pages and counted the weeks--- 27 plus! Later this morning when I informed him, Barry said, "half a year".

I made coffee, found some room to change in where there wasn't danger of a worker sanding or prepping a window, and found the quietest room to make a call and try to straighten out a gift card mishap. I was leaving a message with the restaurant's General Manager when Katie burst into our bedroom. I was so unaccustomed to her "get help" behavior that my immediate thought was that she needed to be taken out. Then it dawned on me-duh- that she indeed may be alerting me. She and I went to Michael's room where observation of  his breathing and facial motions led to only one conclusion. He had experienced a tonic seizure of unknown length and was in a post-ictal state. He was easily roused and even able to take his morning meds within ten minutes. He slept rather peacefully for the next two hours. And so it goes, this life with seizures that is nearing its 29th year.

I am giddy grateful for the absence of those damned seizures for 27 weeks. It's the longest streak we've had in at least a decade, including that glorious period when we tried Jayden's Juice (THCA) and then Charlotte's Web (CBD) until suddenly, inexplicably, everything spiraled out of control for fifteen months. I am BEYOND grateful that the seemingly endless cycle of emergency room visits and hospitalizations is over and hopefully will never, ever rear it's beastly head again. But----this is intractable epilepsy we're talking about here. And never know. You just never know. 

To my readers who are not my epilepsy peeps: In this month promoting epilepsy awareness---just know it is a condition that ranges from controlled to catastrophic. That 30 plus % of those with epilepsy have seizures that are not controlled by medications, hence the term intractable. That it can be devastating to the person who has it and the family members who care for them. That it can be deadly. Let that sink in---it is responsible for 50,000 deaths a year. That better treatments with fewer side effects are desperately needed. I ask you please---don't let my gratefulness, hopefulness or sometimes, even optimism, fool you. Epilepsy sucks big time and increasing awareness is just a small part of what needs to happen.

Meantime...we begin a new streak.