Not all hearts and flowers

We've had lots of running posts lately, and I'm feeling pretty good about my running again. I found a 10k to run over Memorial Day weekend that has me facing the very real possibility of coming in last in a race, as I'm guessing there will be 100 entrants, tops. It will be like high school track all over again! But Mike helpfully pointed out that if only 100 people were running, very few would be watching, so there's nothing to be embarrassed about.

On to the tougher stuff. I promised in my opening post that I would talk more openly about epilepsy. One of the reasons I am raising money for the Epilepsy Therapy Project is because they are committed to accelerating new therapies for epilepsy and stopping Sudden Unexplained Death in Epilepsy.

I have spent years trying to find the right combination of medications. Full body rashes = allergic to two popular medications. My next medication seemed to be chosen at random, and while I stayed on it for several years, I'm still not sure it did much for me but make me sleepy. I've found, in the last few years, a combination that works. I still get sleepy. One medication makes it harder for my body to regulate temperature through sweating, so as a runner, that's difficult. Until dosages were corrected, the other was giving me mini-spasms in my arms (cleared up now). But this is NOTHING compared to what others deal with everyday. Uncontrollable weight gain. Hair loss. Bladder and bowel issues. Birth defects. Liver damage. Gum disease and tooth loss. Aphasia. Migraines. And on and on. We can and must do better.

The scariest thing and what no one ever told me about is SUDEP - or Sudden Unexplained Death in Epilepsy. If it sounds like SIDS, it's kind of how I would explain it. Someone with epilepsy dies for no known reason. While life is 100% fatal and people with epilepsy don't often die as a result of it, it does happen. SUDEP is not the same thing as drowning due to a seizure in the bathtub or having a head injury, or dying of whatever condition caused you to have seizures in the first place (stroke, cancer, genetic disorder). It really is unexplained and most often happens when people are alone or asleep and therefore little is known about the disorder. Except that it is rare and scary so people choose not to talk about it. Doctors don't talk about it to their patients. People with epilepsy don't talk about it at all - if they even know. So how will anyone ever study it and stop it?

If you click the link, you can learn more about Sudden Unexplained Death in Epilepsy, including its possible causes: apnea (pause in breathing during seizures), heart rhythm problems and brain dysfunction. Controlling seizures and developing new technologies for monitoring of seizure activity can help.

We need to talk about the possibility that when people have poorly-controlled epilepsy, they are at real risk for bad outcomes. And we need to put REAL money into research. That's why I'm raising money.

I've said before, I'm lucky. But I'm at risk, just by virtue of my status as a person with epilepsy. And remind me to tell you about that one time the ER doc almost shocked with an AED because my heart rhythm was so whacked out.

That was a heavy post. Look at this kitty!