Archive for August, 2011
Dear Mom and Dad,
I’ve been away now at summer camp for a while, so I thought I’d better write you a letter. I figured you’d get pretty angry if I didn’t do it by now. So, what can I tell you.
Okay, I’m still sick from when you brought me. At least since it wasn’t contagious, they still allowed me, but really, to be honest, I didn’t care. That may make you angry too, but it’s the truth. But yeah. Nothing’s changed. Even IF you somehow thought me getting lots of sun, and fresh air, and lots of swim lessons and meeting new pals, and more stuff would help, well, it hasn’t. Still seizing big and all the rest. So you’re still going to have to deal with me when I come home. Just so you know. Be prepared?
The dying and dead stuff? It’s really weird. I met this girl here. Even more weird, I don’t know her real name. She just says everyone can call her “PA.” So, we all do. She’s got epilepsy like me, is sick just like me now but A LOT worse. What a coincidence, don’t you think?
But this is where more weird stuff comes out. Sure, there’s the epilepsy and her name, but she must have a really odd life too. Everyone is saying she’s a liar as it can’t possibly be true. They’re also saying she’s crazy. A real mental whacko. I don’t think she is though. She’s calm when she talks about it. Not jumping all over like some freak you’d see in a movie. But she’s not TOO calm. Not like a zombie.
She’s saying her mom’s husband may be dying but she can’t tell yet because her mother is “right back just where she used to be!” I’m not sure what that means but I think she’s saying she can’t get answers from her mother, somehow. She does know the cause. It’s cancer. Prostate Cancer. She explained it to me and dad, if I can tell you, it kind of freaked me out! Does that really happen to us when we get older? That prostate thing?
Next, she knows someone else who just died. Some of her friends. Their dad. I told her I was really sorry about it but she didn’t seem to care. Now, she’s running around telling people that there is a very dangerous and bad man out there, but then don’t tell anyone she’s said a word of it! I don’t understand mom and dad. Why would she do that? Tell people and then say not to tell anyone she did. Is she scared? Is she really crazy after all?
I do know she’s not stupid. We talk about lots of other things too. The above stuff is just kind of “new?” We laugh so much as she just got a new smartphone. I’m trying to help her get the hang of it but she keeps telling me she’s a total stupid loser. I don’t think she is. I’m kind of embarrassed to say it mom and dad. God if anyone ever found out here at camp! I really kind of like her. I think she’s pretty cute no matter what she says. Maybe in my next letter home, I’ll send you a photo of us together.
Love from your son,
Or, you could say “relapses” as I seem to have figured out. Slowly. I’m being rather more than the obsessive, medical, note taker than I usually am regarding my diagnoses. This I always do, as far as tracking any issues, or when more significant KABOOMS occur. Yes, a “Medical Kaboom” does exist. It is not specific to any discipline, but is most thoroughly covered in Surgery 101.
So, as per the title of this post, that’s why I haven’t been around. Your, “So?” What’s going on, right?
Today, it has been almost three weeks to the day, of being back on my regular dose of my Clobazam/Frisium (60mg.) I lost it all right at the beginning of June. What day is it today? August 6th. I mentioned something earlier about retrograde amnesia problems, but they are pretty minor–yes? Well, they are definitely minor compared to short term! Someone will tell me to do something, and within 5 seconds, I’ll forget!
Now, after these three weeks? There was a little improvement. Although, I just knew. In my head, I knew this would be a LONG recovery.
I could eat a bit better (some things are still off limits.) The breakthrough seizures had stopped (at least as far as I could tell?) However, I was still captive to the withdrawal signs and symptoms which are pretty awful sometimes. The only HUGE unknown was the Typical Absence Status Epilepticus. That is primarily why I take this drug. I need it. Desperately. Without it, I cannot leave my bed for two weeks every month. For me it is catamenial (due to your period.) Moreover, for lucky me, it is both when I get my period and ovulate.
Dropping the med cold turkey completely messed with my hormones for the first month, June. I was wondering if it would continue into July. No. I got my period. First Blitz Attack!!! I had no damn clue. Other than the fact I eventually figured it felt like I was dealing with both the TASE problems, and the withdrawal at the same time.
Fast forward a couple of weeks or so. Where I kind of am now. As bloody awful as it’s been (and maybe still is?) I never would have figured it out. Triple Whammy. The breakthrough seizures are now back with the TASE. I can now definitely distinguish the TASE from the withdrawal, that I am still dealing with.
The breakthrough seizures this time? A Simple partial in my legs before going to sleep one night, waking up after having a tonic-clonic another night, and this is something I have NEVER had to do in my life! It’s a good thing I have two? That would be Wonder Cane and his brother. A damn good thing I just happened to have both by my bed!
I had to get up and go to the bathroom the other night. I grabbed Wonder Cane’s brother (he was the closest.) Oh, holy hell. Even though I was barely awake and totally out of it, my brain was screaming: “Todd’s paresis!!! Todd’s paresis!!! I’m gonna go down like a tonne of bricks and be shattered all over the floor!!!” I grabbed Wonder Cane.
I found it a very strange feeling to have to walk with two canes. A lot of people can tend to use canes wrong. Or maybe “backwards” is a better way to say it. You use the cane to support, or “in place of,” your injured leg. When you walk, the cane is placed alongside that leg. Well, here I am trying to get two canes going and coordinated with near paralytic legs! I still think it’s pretty amazing I didn’t end up shattered all over the damn floor!
I suspect that may have been a tonic-clonic, as well. I don’t get Todd’s that like that with any of my other seizures (i.e. so severe and bilaterally.) This led me back to those two weeks before. When on my period, some odd, yet illegible writing on a notepad. That would have been a Complex Partial.