Beau Jackson

Now here’s the kind of picture you don’t usually see of yourself:

my brain

I got in to see my doctor last Friday.  We looked over the EEG report together and while there is some disturbing stuff there – phrases like “this is an abnormal EEG” and “epileptiform spike and wave patterns” – there is also the notation that the epilepsy like patterns were NOT happening while I was actually having an episode.  In a previous post I mentioned my very strong reactions to the strobe lights, and there was nothing abnormal happening in my brain during those times of the test.  I had several of my episodes while talking to my doctor, and he is now firmly of the opinion that I do NOT have epilepsy. I guess there was some sort of miscommunication between the neurology office and my doctor’s office because they put me on anti-convulsants and ordered an MRI based on the same EEG.

So, if not epilepsy then what?  My doctor says Tourette Syndrome (here after TS).  I suppose technically, I can’t have TS, because part of a TS diagnosis requires that “you’ve had tics for over a year” and I haven’t.  I also don’t have any “phonic tics” (so, no…I’m not blurting out obscene words, or any words or sounds for that matter).  I guess saying TS is easier than saying “Transient or Chronic Tic Disorder”.

The really really really great part about all this is that I am cleared to drive again.  The really not so great part of it is that I’m still having these stupid episodes with the same frequency.   Don’t get me wrong…I will take TS over Epilepsy all day long.  “Muscular disorder” beats “brain disorder” for sure.

I am truly thankful for all the prayers and support.  The generosity of people (like Seth who drove me to and from work, and Kirk who volunteered to drive me and my kids to the state fair in Sedalia) is humbling to say the very least.

I’m still scheduled to see a neurologist on September first.  I don’t know what will happen after that.  Maybe he’ll change the diagnosis again.  Who knows?  I still feel aprehensive because of that possibility – that it’s not TS, that it’s something else, that it’s something worse.  So keep praying for me, and I’ll keep you posted. :)

Tonight I was folding laundry, and Teresa (my soon-to-be five-year-old) was sitting next to me.  She really wanted to help, but she’s not very good at folding clothes yet.  She looked at me and said “You know, you’re lucky”.  If you’ve been reading my last few posts, you’ll understand why my first thought was “I don’t feel so lucky”, but I asked here why she thought so.  She said, “you can fold laundry”.  LOL!  Woohoo!  Lucky Me!  I can fold laundry!!! hahahahaha!  I thought it was a very cute thing for her to say.  I told her I thought she was lucky too.  Then she said, “yeah, I’m lucky.  I can talk, and dress myself, and make a sandwich, and help clean up, and…” she went on for quite a while about all the little things she can do and feels lucky to be able to.

What an amazing perspective!  Here I’ve been moping about off and on worrying about my problems, and NOT thinking about all the ways I’m really lucky.  And you know what?  I really am lucky…even with the epilepsy, because it could be a LOT worse.  I’ve known a few people with epilepsy that had seizures that knock them out (literally) for several minutes, and then they take the better part of a day or two to recover.  I may have a whole bunch in one day, but once it’s over, I can take a deep breath, try to relax my neck and shoulders, and get on with life.  I may not be able to drive for the time being, but on the flip side, I’m only putting gas into one vehicle now instead of two.

Here’s a little exercise for you…how are you lucky?  Think in terms of a four or five year old.  Think of all the little things you can do that my daughter might think you’re lucky to be able to do (like tie your shoes, or ride a bike, or fold laundry!)

It’s been a lot of up and down for me over the last few weeks.  I started down…very very down.  Prozac has helped that tremendously, but then came the EEG and the confirmation of Epilepsy.  Ironically, that provided for some brief  “up time” because at least I had a diagnosis, and at least it wasn’t something psychological that I was doing to myself (and believe me, I worried about that and the implications a lot).

So then came waiting on the MRI and waiting on the results, lots of down there.  Then the results – super up (not having a brain tumor definitely qualifies as up!!!).

Now I’m feeling pretty down again.  Not being able to drive is taking some getting used to.  I’ve been trying to find info about people with seizures like mine, and how they relate to driving in particular.  It doesn’t look good.  I’m still hopeful that I’ll be able to drive again, but I can’t help but contemplate what life is going to be like without being able to drive.  I keep telling myself “yeah but I haven’t had any gran-mal or absence seizures, surely I’m different”, and then the part of my brain that does not live in denial chimes in with comments like “that’s true, but how many times have you read that seizures change?”.

I feel very broken at this point.  Not in a psychological sense (’cause the Prozac is still doing it’s job), but in a litteral, physical sense.  I feel like I’m somehow deffective and need to be repaired, like I’ve got a part worn out.  That is not a good feeling at all.

I think this blog may get to be a little bit “diary like” for a while.  It’s somewhat theraputic/cathartic to just write down what’s going through my head.  Sorry for the down post.  I’ll try to be “up” next time.

I got the MRI results today.  Good news!  No tumors or leisions or scar tissue.  It’s a tremendous relief.  Even though the chances were very small that I had brain cancer or some other operable malady, I have to admit I was pretty worried.

Of course, the flip side to the good news is that I really don’t know what is causing the seizures.  I find that frustrating.  I hate the idea of “treatment” that just goes on indeffinitely.  “Cure” works much better for me – find the problem, fix the problem, get on with life.  However, if “treatment” is the best I can do, then “treatment” is what I’ll settle for.  And “treatment” beats the heck out of “tumor” :)

The next step is getting in to see a neurologist.  Hopefully that won’t take too long, but even if it does, there’s not the stress level in waiting for an appointment like that!