A Random Gathering of Thoughts

I know I don’t post nearly as often as I should if I want anyone to bother reading. However, I don’t think anyone reads this blog anyway.

Most sites, by now, have an FAQ. I think half the time those supposedly frequently asked questions are made up by the author – a sin I think should be punishable in some slow and drawn out way. Still, FAQs can be very useful when learning something new, troubleshooting a problem, or even seeing a doctor.

The problem is, while these questions are frequently asked, that doesn’t mean they’re intelligent questions leading to answers one actually needs to know. I believe anyone who espouses to give useful information to should instead create lists of SAQs, “Should Ask Questions.”

Here’s an example:

I have epilepsy. There are many kinds of epilepsy – a fact most people don’t know. The questions I most commonly get asked aren’t really the important questions. After all, if people knew enough about the topic to ask the intelligent questions, they probably wouldn’t need to ask me anything. Here’s a short list of the questions I am asked the most frequently about this condition:

• Have you ever had a seizure during sex?
• What does it feel like to have a seizure?
• How did you get epilepsy?

These aren’t bad questions, and the first is actually quite amusing, but they don’t really answer much that’s important for someone else to know if they care about me and want to be able to help if something bad happens.

Instead, I think these should be the questions that need answers:

• What types of seizures are there, and what kind do you have?
• What do I need to do if you’re having a seizures?
• How will I know if you are?
• What activities can you not do, or are you restricted in, because of your seizures?
• Do you take medication? If so, what is it, and how does it affect you?
• Is epilepsy contagious?

For me, the answers are pretty simple. There are many kinds of seizures, from tonic clonic (grand mal, fall on the ground and convulse) to absence seizures (what they sound like, one mentally just goes missing for a moment), to various emotions out of the blue, to seeing lights – and more. I see lights. You won’t know I’m having a seizure unless you pay a lot of attention to detail. My eyes dilate. My face gets a bit pale. My breathing rate increases a tad. You can help me by being patient when I stumble over words, or don’t seem to understand what you’re saying. You can help by not expecting me to have a very good memory for needing to do things. You can help by honestly caring, and understanding that life can be difficult for me from time to time. I can do pretty much anything I want, but because my seizures can make me a bit dizzy, I tend to avoid tall ladders, the edges of roofs, and driving when I’m having a bad day. I take Vimpat. It works pretty well. It makes me hyper, and sometimes euphoric, but otherwise doesn’t have many side effects for me.

And no, epilepsy is NOT contagious. I used to think that was common knowledge, but over the years, I’ve learned how wrong I was about that. Perhaps that should have been question 1. You can’t catch it from me. I promise.

Armed with just that information, a lot of things are answered that are important.

But, I’ll go ahead and answer the first list:

• It happens often enough, but since I don’t convulse anymore, no one really notices. It did happen once back when I had convulsive seizures. I broke is nose with my forehead. Very unsexy.
• This is so hard to answer, but it starts with feeling like I’m dropping on a roller coaster. Then, I see these fuzzy pastel lights floating around just behind the right side of my head. (Yes, I know you can’t see there, but I see them, I swear.) Then, they go away, sometimes like *poof* and sometimes fading out slowly. I’m left feeling a bit odd for a few minutes. Things don’t seem quite real, though my reflexes and ability to react physically to the world are intact, I kind of feel like it’s a dream.
• No one really know how I got epilepsy. Maybe it’s something I was genetically doomed to from conception. Maybe something got messed up in my brain wiring while I was forming the womb. Maybe it happened at birth. Maybe it was the lead exposure as a kid. Most people never get an answer to this question, and that can be frustrating for us. Knowing how won’t help you understand the condition. It just brings up a topic that’s usually sad.

Now, take this example and apply it to anything in life that has an FAQ. Keep in mind, no matter what it’s labelled, a knowledge base is not an FAQ. I guess an SAQ should be more like a knowledge base, but with concise answers about general knowledge, rather than specific step by step how tos.

On that note, the next post is going to be a how to. If anyone wants a specific topic, speak up now!

I suppose I’ve been eating too much chocolate – yes, there is such a thing – or possibly mushrooms, but whatever it was, for the first time in over a year, the kidney stones have surfaced. Once passed, they’re so tiny. I look at them and wonder how in the world they cause such horrible pain, but they certainly do.

There’s no mistaking kidney pain for anything else. A stone always starts, for me, with this ache in my back on the left that doesn’t go away no matter how I twist, stretch or lay. I know it’s coming, which isn’t helpful. It just creates this horrible impending sense of doom. Eventually, the pain comes in waves, like contractions during labor. The muscle spams and pain radiate out, up into my shoulder and down into my knee, sweeping pain into every muscle in between, and every joint. When a wave has passed, the relief is heavy, and all I want to do is sleep. But, then another wave comes. Eventually, the stone is expelled, and I’m so exhausted all I can do is sleep.

I wake later feeling energetic and on top of the world. It’s a nice feeling, but not worth what brought it on. Except, sometimes, those stones are sneaky little bastards. There’s a saying: Troubles come not in single spies, but in battalions  The same can be said for kidney stones. They like to wait until I firmly believe the pain is over, and sneak in unannounced.

I’m at 5 now in the past 30 hours or so. This fifth one has lodged itself in my ureter (the tube from the kidney to the bladder, which is apparently very very tiny), and is moving a millimeter at a time, or at least that’s how it feels. I’ve taken a muscle relaxer, and I’m holding off on the oxycodone until it kicks in. I don’t want to risk taking too much medication because I’m in pain now. It’s really hard to wait, though.

This really is a close feeling to that of labor, except without the endorphins and the massive need to push. In the end, I won’t have something so awesome as a life to hold in my arms, either. Then again, I won’t have to feed and support a kidney stone for the next 18 or so years, either. I guess there’s a decent balance there.

I don’t know how well I will hold to it, but I have resolved to do my best to avoid chocolate from now on. The timing is horrible, as the holiday season puts chocolate in my path on a consistent basis. I will have to be determined, and self controlled. The first, I’m entirely capable of. The second isn’t my forté.