Beau Jackson

Friday was a pretty rough day.  I got one piece of upsetting news from the neurologist – during my sleep study EEG, there were “several events” that he wants to cross correlated with *another* EEG – this one a 24 hour EEG.  That produced a lot of intense frustration for me.  On the one hand “several events” is pretty darn vague.  Is several 5?  How about 10?  Maybe 20? And what the heck is an “event”?  Is it something that would make him think that my condition is better than he thought or worse than he thought?  Too many unanswered questions, and of course by the time I got back on the phone with his nurse, he had left for the weekend so I won’t hear anything until Monday.

Another bit of upsetting news from Friday – I had a biopsy done on a rather ugly mole, and it turns out it’s cancerous.  It’s a basal cell carcinoma (which I think is Latin for “big ugly mole”) and is technically malignant, although they almost never spread to other parts of the body.  Normally I would not have found it that upsetting, since my goal was to get it removed anyway and this just confirms that it was a good goal.  But put on top of the other news about more EEG tests…well it just kind of sunk me into a pit.

I’m feeling better today though.  The day started pretty early – our neighbor shot a doe and called to ask if we wanted it.  We all like venison, so the day started pretty early with skinning/gutting a dear, but it was a good time all the same.  We also had some folks over that are buying a couple of sheep from us, and they were really nice.

Tomorrow I get to do another sleep study.  It turns out I have sleep apnea after all, so tomorrow they will be putting me on a CPAP machine and getting it adjusted to me.  I’m really, REALLY looking forward to this.  I’m extremely hopeful that I will actually start SLEEPING through the night again – something that hasn’t happened since the seizures started.

Trying to stay positive!

I had a sleep study done last night – I’m actually blogging from bed at the sleep center this morning.  On the one hand, the good news is that I don’t have sleep apnea (well, just a little if I sleep on my back), at least not enough to warrant a CPAP machine.  On the other hand, the bad news is that I don’t have sleep apnea.

That may sound odd, but in a way I was hoping my sleep problems were due to apnea and they could put me on a CPAP machine and it would be this magic bullet that just fixed everything.  So I’m kind of back to square one, in not knowing why I don’t sleep well.

The technician who was monitoring me was kind enough to take a picture for me and mail it to me – I thought it would be good for laughs.  If you look closely, you can even see the red “L” on my forehead.  I’ll let you decide for yourselves what that stands for :)

All wired up

I had done quite a bit of posting – to air my worries as it were – but you know what?…it’s good to share the good news too.  Things seem to be getting a little better.

Elizabeth is definitely on the mend.  She does *not* want to lay around and rest, she wants to get outside and play.  She forgets that she’s still hurt, but gets the occasional reminder when somebody bumps her arm.  We keep telling her to go easy, but she must be using a different definition of “easy” than we are.  She has another appointment with the orthopedic surgeon today – I imagine she’ll have quite a few of these follow-ups to do x-rays on her elbow to ensure everything is mending correctly.  Very encouraging all-in-all.

My seizures are definitely coming under control.  Most days I have a handful (read: 10-20) of “shivers”, especially at the end of the day or during stressful times, but even if you were looking for them you’d never notice them.  I can feel them of course, but from the outside they’d be almost invisible.  I still have a bigger one once in a while but not daily any more.  Last Thursday (Friday? not sure), with the help of a couple of Benadryl, I slept through the entire night for the first time in about four months.  If you’ve never gone an extended period of time without a good nights sleep you don’t know how wonderful that really is!   I also got my blood tested last week to check the med-levels in it, so I hope to hear back on that today or tomorrow.  The doc may or may not increase my dosage depending on the results of that test.

I may still be on the emotional roller coaster – I may just be on an “up” part right now, but I’ll take it! ;)

…the medication is beginning to work.  The last three days have been very “light” days in terms of seizure activity.  Just what I call “shivers”.  None of the face-scrunching, shoulder-clenching stuff.  Today went really well – nothing at all until 2:00pm or so, then some very mild shivers.  I did have several “hard” seizures around 8:00pm which I assume is because I’m getting tired (being tired really triggers the seizures).

I feel like calling the neurologist and saying “crank up the dosage another 1000mg and lets get these suckers knocked out!”.  :)  That’s probably not a good idea, but I feel pretty optimistic all-in-all.

Yesterday was a good day for the most part.  Productive at work (that always makes me feel good) and I had two separate times where I felt “right”.  That’s a hard concept to explain.  Since I started having these seizures/tics/whatever they are, I have felt “wrong”.  But twice yesterday I said to myself, “I feel really good right now…I feel ‘right’”.

Today has not gone so well.  I was getting a ride to work with a co-worker, and that apparently isn’t going to work anymore.  Having to depend on other people to get around has got me pretty down.  For the first time in years I find myself wishing I lived in a larger city that had buses – and I really don’t care to ride the bus.