What’s blowing my mind tonight?

August 27, 2014 Rebecca Gaunt 3 Comments

So glad you asked. What’s blowing my mind is that it is so hard for sick people to obtain medical cannabis when THESE are the kind of people that oppose it.

And my personal favorite from Captain Creeper who apparently is stalking me even though I wasn’t featured in the WSB story under which this was posted:

Yep. That’s me. Magnum PI(diot) found me out.

Update–My little friend’s real first name appears to be Darin and he’s dating someone named Jessica Callahan. It’s hard to fight the temptation to swing by her workplace (on her profile) and ask her if she knows what a POS he is. He appears to be in the NW part of the metro Atlanta area (Cherokee or Cobb, maybe Woodstock or Kennesaw) with several connections to people that went to Pope High School. And I’ve satisfied my curiosity about what he looks like thanks to her page. Here’s his Facebook with his racist rants and if you’re curious about his pictures, check out his girlfriend’s page. And if you know who he is, please let me know.

And I guess this is why I get the pleasure:

Another update : Think I’ve found him AND his mug shot. You’d think someone so opposed to marijuana would have a clean record 🙂

Current Events, Tuberous Sclerosis

Another blogger talking about the #IceBucketChallenge! *groan heard worldwide

August 25, 2014 Rebecca Gaunt 2 Comments

Too bad. I’m gonna write about it anyway. I’m terribly jealous of it, you see. What I wouldn’t give for this kind of exposure for TSC. But what it has done for the ALS Association is amazing. From July 29 to August 21, the ALS Association received $41.8 million in donations, compared to just $2.1 million during the same time period last year.

“Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”

Despite how horrific the disease is and the incredible success of the ice bucket challenge, the amount of criticism is incredible.

1. It’s a waste of water (everyone who said this better be taking three-minute showers).

2. Not everyone who does it is actually donating (okay, I agree that’s lame, but maybe, just maybe, they challenged someone who challenged someone who wrote a big fat check. And at this point if you haven’t at least heard of ALS, you are living under a rock).

3. People aren’t including the link or contact info to donate, or any factual information about ALS (ideally, yes people should make it as easy as possible to donate. If you haven’t done it yet, please include the link to ALSA.org)

4. Participants just want attention. JUST DONATE AND SHUT UP ABOUT IT.

Yep, number four is the one I want to address. Wouldn’t that be wonderful? Wouldn’t it be delightful if people just woke up and said, hey, I think I’ll donate to charity today! Yes, of course that does happen sometimes, but the reality is that it often takes a big disaster, media coverage, huge event, celebrity endorsement, or a diagnosis of a friend or family member.

Some people think the ice bucket challenge is nothing but people wanting attention when they should just quietly donate and say nothing. I might have made that cynical statement myself a few years ago. But I know something now that I didn’t know back then. It is extraordinarily difficult to get people to donate to your cause when you don’t have the NFL wearing your awareness color for a month or celebrities talking you up on late night television. And I think a lot of people criticizing it have no idea what it is like to try and draw attention to a charity that is helping your child, spouse, family or friend.

Those of us dealing with lesser known disorders are begging for support on social media. And if some “annoying trend” of dumping ice water on your head is what does it, so be it. We don’t have time to worry about whether our campaign is “like totally annoying” or “trendy” or “stupid.” What we know is that someone we love is hurting and we want relief for them. As I stated on Facebook (and was met with WAY too much enthusiasm by my friends for seeing me covered in crap) I would roll around in horse poop if it would bring in the donations. Just imagine what the critics would say about that. And then I would show those critics a video of Connor seizing or a picture of his two seizure-related black eyes.

If a silly gimmick brings in the money, so be it. I’d rather people donate because of a fun challenge than because they have received the heart-breaking news that they or a loved one have received a terrible diagnosis.

The first TSC walk we participated in was a couple months after Connor was born. He had just gotten out of NICU. We raised six times the goal. In the two years since, we have only raised about a third of that amount each year. I don’t say that to be critical. If you have ever donated at any point, I am extremely grateful and don’t consider anyone obligated. But I share this to make the point that it takes something big to get the donations. Connor’s new diagnosis was the big event that triggered such generosity in 2012. But now it’s just a normal, run-of the mill, annual activity of mine to raise money for the walk that no longer garners the same degree of attention. Who knows; maybe I really will have to roll around on a stable floor to get the attention I got the first year. That’s just how it goes when fundraising for charity. I mean, why do charities do walks, 5ks, banquets, or sell products? Why don’t people just donate! Because we’re human. We like t-shirts, food and Girl Scout cookies. And now — dumping ice water on our heads.

Why does something bad have to happen to inspire people? Is it such a terrible thing that people are donating because of something light-hearted and fun?

And to my friends that were challenged and opted to do it on behalf of the TS Alliance, I thank you from the bottom of my heart.

Parenting, Tuberous Sclerosis

Seizure Hunter — The Elusive Prey

August 1, 2014 Rebecca Gaunt 2 Comments

Seizures are really obvious. I couldn’t possibly miss one. We’ve all seen them on television: the fall to the floor, the violent thrashing, maybe some foaming at the mouth. Therefore, it’s really easy to keep track of them for the neurologist and make decisions about which medication is the perfect match for your situation.

Hear that? That is the sound of the collective eye rolling of the epilepsy community. Just kidding, ya’ll!

It turns out that a seizure can look like damn near anything. Eye rolling, staring, wandering, confusion, a single limb jerking, lips puckering, a split second head drop, a split second loss of muscle tone that sends a person plummeting to the floor, jackknife motions of the body, going stiff as a board, a scream…or nothing. Nothing at all. All you know is that suddenly your child went from smiling and laughing to laying his head on the floor and going to sleep, or he’s suddenly so weak that his arms give out and he smacks his head on the floor resulting in two black eyes. It’s not just seizure freedom that can be elusive, but the seizures themselves.

Was that a seizure? Was that? And what about that? Do I count that if I’m not sure? Was that one seizure or two different ones back to back? And that one? That one looked like a weird combination of tonic clonic and complex partial, so which do I mark it as on my Seizure Tracker app? Our smart phones fill with videos of suspicious behavior we share with our online support groups and doctors trying to get answers. It takes an hour to do the dishes because I turn around and look at the baby every 30 seconds to see if anything is happening. Every stoplight I turn around and squint at the baby mirror. If he has actually managed to go a few days seizure free, when one happens, I play mind games with myself about putting it in the tracker. That was a small one. Am I sure it was really a seizure? Does it count if I don’t record it?

I think the first year was the worst. Babies are weird and do weird stuff. How do I differentiate normal weird from abnormal weird? Is he discovering his hands or is he seizing? Trying to roll over or seizing? It’s even worse if it is the first child and there is no one to compare him to. It’s a little easier with a toddler. Not easy. Just easier. It is easier for me to distinguish typical behavior from anomalies, or if a movement was intentional or not. Not all the time, but enough to do the dishes in a reasonable amount of time. Or settle for a quick glance in the rear view. Sometimes I even settle for logging the seizure type as “unknown .”

And choosing just the right medication? Yes, that was another collective eye roll. We experiment, and change doses, combine two, three, maybe even more seizure medications. We try one med with great anticipation because it made another kid seizure free, only to find that it makes our kid have more. And if we find one that works, eventually he insists on growing or something else changes, and the experiment continues.

I have to accept that there are limits to what I can fix and do the best I can.

Most importantly, I finally realized that it doesn’t make me a bad parent if I don’t always know. I WILL miss seizures. I won’t know what every movement is. There won’t always be answers. There will be good days and bad days. But they will be worth it.