Development Blog

Want more? Check out my development blog:

Saturday, August 23, 2014

21 years at Camp EAGR

So this is it. As of this year, I am of legal drinking age... in camp years.

21 years at camp is a lot of time. 138 days. 3312 hours. (calculations based on 6 days per week as a camper - 9 years as a camper - and 7 days as a counselor - 12 years as a counselor)

As always there were some highlights and some not-so-highlights

The week started off interesting. When we were out the night before the kids showed up, someone said something like "Is that Randy approved?" and that simple statement sparked a thought in my head... I need a rubber stamp that says "Randy Approved."

The next day we went to Walmart (as always, since that's about all there is in Warsaw) and while looking around I saw an address stamp. Of course, since it's an address stamp for personal use, it was customizable. It came with 2 sets of letters (each set with about 5-6 of each letter) and a pair of tweezers to put the letters on with. Of course I bought it, made my "Randy Approved" stamp, and started stamping everyone at camp... and maybe some logs... and some other random stuff.

Some of you may remember that I set a goal earlier this year. I hadn't climbed the rock wall in a few years for various reasons: My leg hurt, I sprained my foot, etc. Bottom line... I was too out of shape to try, and I kept making excuses as to why I didn't want to climb. Well, despite many seizures in the days leading up to the wall (I'll get into that later) I climbed the wall! It was the easy wall, and my body was basically destroyed already from seizure soreness, and afterward I was even more sore and almost dead from climbing a wall that I *really* shouldn't have climbed... but I made it to the top of the wall. I was determined, and I forced myself to do it. And I succeeded.

This year there were A LOT of counselors having seizures. Seizures are normal at camp (after all, it's a camp for kids with epilepsy) and most of us counselors are former campers turned counselor, but this year we had an exceptional number of counselor seizures. I myself had 7 seizures in the last 5 days of camp. 2 on Tuesday, 2 on Wednesday, and 1 every day following. My cabin had the rock wall scheduled for Thursday morning, so by that time I had already had 4 seizures and the right side of my body was absolutely killing me. By the end of the week, my right tricep and my right shoulder were so sore that I was actually wincing in pain during every seizure. I think I took 3 Ativan pills throughout the week, which is just unheard of for me.

The week ended with what is going to sound terrible, but was actually an amazing moment. Before that though, some back story.

Throughout the week, there was a girl named Grace who was in Camp COAST (a new addition to Camp EAGR which is for adults 18-25ish) who was having a lot of seizures. I had been helping Grace's counselors with her seizures whenever I had a chance. At meals Grace's table was right next to mine, so I was at their table helping out whenever I could. Grace's seizures weren't violent or anything, she just kinda lost consciousness and would slowly tip sideways or backward. The hardest part of caring for her seizures was just getting her into a safe and comfortable position. And the fact that she had a lot of them made them difficult as well.

Near the end of the week (Saturday morning I think) I started having another seizure during a meal. Lauren (Grace's counselor) knows me well, and knew that I was seizing. As we were walking out of the dining hall, Grace started having a seizure near the bottom of the hill. I started helping Lauren, as I had been throughout the week, until Lauren yelled at me: "You can't take care of a seizure while you're having a seizure!" Of course I argued with her until her co-counselor came over and Lauren made me leave, A few minutes later, my seizure stopped... or so I though. My leg had stopped shaking, but the seizure was still active.

Thinking that the seizure was over, I went back over to Grace and started helping with her seizure. Again Lauren yelled at me, but allowed me to help after I showed her that both my arm and leg were under control. While Grace is on the ground, and I'm crouched down helping keep her in a safe position, my leg starts going again. Now I'm having a seizure while caring for a seizure, which is exactly what Lauren didn't want. Luckily, Lauren didn't know. As it started into my arm, it got a bit hard to hold Grace, but I fought through the pain until the seizure was over. When Grace came out of the seizure we got her up and away from the hill, and all was well again.

The amazing part of this moment was just realizing, more than ever, that I can do anything at any time. I literally cared for someone else while I was having a seizure. Most people would have walked away and not looked back, but I couldn't do that. I wouldn't let myself do that. I had spent so much time caring for Grace that week that I had to take care of her before myself, because I KNEW that I would be OK. I knew that she would be too but I still had to help, just in case. As terrible as it sounds, it was seriously one of the most amazing and memorable moments of my life. It's indescribable what I felt looking back at the situation.

So there it is. Camp 2014 in a nutshell. Of course, there's WAY more to tell than all of that, but I could spend days writing about both the ups and downs of camp every year. The "Randy Approved" stories alone could go on for hours.

Friday, August 22, 2014

Too many seizures

I feel like I'm living on medicine lately. Like I need so many meds, just to still live a not-so-normal life.

Meds to try to prevent my seizures - Keppra and Lamictal
Rescue meds to stop the seizures when they're happening - Ativan
Pain meds to allow me to move my arm without pain - Ibuprofen
Magnesium to try to supplement everything else - it's been said to help migraines and/or seizure activity

And now I'm going to try to use my allergy meds as a supplement as well, since I think my allergies may be a trigger for some of these seizures.

It's exhausting - the seizures, the anticipation, the side effects... and just taking so many damn pills; average 12 pills daily assuming 0 Ativan, only 1 dose of Ibuprofen - 3 pills, 2 magnesium, 1 allergy pill, 3 Keppra and 3 Lamictal. Increase that to 13 if I take a short term allergy med along with a 24-hour one, which is usually what I do, 14-15 if I take Ativan for a seizure, and another 3 pills every extra Ibuprofen dose I need (I usually try to max out at twice a day) bringing our total to as many as 18 pills per day.

I had 13 seizures in 8 days, spent an entire day sleeping (which led to no seizures that day) followed by 2 more. This week... 3 on Monday, 3 on Tuesday, Wednesday was sleep day, then 2 more on Thursday. 8 seizures in (effectively) 3 days. Straight up exhausting. And all of this started during camp, which makes it even more exhausting.

My doctor has been out of the office all of this week and returns today (Friday.) I have an appointment with him for Monday, but I need things to change ASAP. I need yet another medicine, I need to know what caused all of these, I need more rescue meds, I need these to stop - or at least slow downs - and I need answers. 29 years with no answers... I need something.