Beau Jackson

I have slept with a CPAP machine for seven nights now, and I’ve made a few observations.  While I have felt more rested in the mornings,  I’m still awake a lot in the night.  There are a few sleep issues that CPAP can not resolve.  In no particular order:

• Staying up too late
• Not taking the medication to help you go to sleep (so you sit and breathe through the CPAP and stare at the ceiling for an hour or more)
• Seizures/episodes/whatever – I’m still not sure what these dumb things are
• Crying children that have decided to be awake at 3:00am
• Having to use the bathroom
• Dogs barking (and sounding like they’re in your yard, even when they’re not)

So, as far as I’m concerned the jury is still out on the CPAP machine.  I think if I ever get to sleep all the way through the night, it’ll be a big help.  :)

I got to the hospital this morning a little after 9:30 for yet another EEG.  This one is for 24 hours (at least, let’s hope the dr. doesn’t extend it), with a video camera rolling the whole time.  The one upshot to this EEG is that the monitor has been sitting in front of me, so I’ve been able to watch my brain waves on screen all day.  I’ve also been able to watch the video – it’s kind of screen in screen – so as I’m having seizures/episodes/whatever, I can see it on the monitor too.  Allena is right – I do look like I smell something bad.  :)

Watching little wavy lines on a monitor gets pretty tedious after a while though.  I managed to put in about a half day’s worth of work from the hospital bed.  BTW…anybody out there know about XSD schemas?  I’m trying to get a schema generation tool working and I don’t even know all the rules for the schemas.  Work came to a halt with what I call “the afternoon queasies”.  This is basically when I start feeling nauseous and need to have a snack of some sort (thank you depakote).  Mostly it’s been a pretty dull day.

I’d been a little apprehensive that I’d have this EEG and wouldn’t have any episodes.  I shouldn’t have worried – there’s nothing like apprehension to trigger them.  It’s been a fairly “hard” day in terms of number of episodes and strength.

I want to ask a question of my usual readers (all four of you!), but really it’s an open question to anybody that sees it.  After this EEG is done, I think I am done too.  With EEGs that is.  Allena has been skeptical that this procedure will reveal anything useful.  I wanted to have it as sort of a last try to see if any kind of more solid diagnosis could be made.  So if the neurologist recommends more tests, should I have them or not?

My inclination is “not”.  At least it is at the moment.  I had thought about driving up to KC to got to the epilepsy center at St. Luke’s (a research facility), thinking they might get me the answers I want.  But now, I just feel discouraged.  I feel like I should just quit looking for answers, keep taking the medicine and praying this all goes away – when I’m rational.  When I’m irrational I think “heck with it, I’ll just quit seeing doctors and taking meds altogether”.  That irrational part really kicks in when I feel like I’m a burden on somebody.  Even here in the hospital when the nurse comes in and asks if I need anything…which is stupid.  It’s her job to ask after all, and I’m wired to a monitor, and even if I do need/want something it’s not like I know where they keep it, so I couldn’t get it for myself anyway.

I think I’m depressing myself.  No more blogging tonight.

Many of you know that I’m an adult convert to Christianity (Catholicism specifically).  Probably what you don’t know is that I have periods where I wonder if it’s all true or not – where I feel very distant from God and my faith in general.  Ironically, sometimes I drift further from God when things are going badly, and sometimes I grow closer to God when things are going badly.

Lately, I’ve been having a bit of a re-conversion or renewal of my faith.  I’m sure that my recent problems with epilepsy and lack of sleep, and the many changes in lifestyle these things have caused have played no small part.  One of the things that has been an eye-opener for me in several was has been a blog I’ve been reading called “Conversion Diary” (there’s a new link in the sidebar for it).  This blog actually started out being called “The reluctant atheist”, and it’s about this lady’s conversion from atheism/agnosticism to Christianity and Catholicism.  Her story is quite different from mine, but she writes eloquently about a LOT of the same things I’ve struggled with since converting.  Her words have been eye-opening and timely in more ways than one for me.  I found this quote on her site today:

When I decided to stop talking about being “open-minded about religion” and actually open my mind to religion, I became a Christian. And when I set aside what I want to be true to seek what is actually true, I became a Catholic.

Catholicism just rings true to me.  I haven’t done nearly the reading or research that she has (but I’ve listened to a LOT of sermons from EXCELLENT priests – check out http://www.audiosancto.com) so my Catholic education has not been totally lacking.

I’ve also started reading “Story of a Soul” by St. Therese which has been excellent so far.  I frequently feel like a very un-holy person, like I’m just going through the motions and not even trying.  Maybe I don’t acknowledge the little things I do quite enough.  I hope to find more of the little things that St. Therese incorporated into her own path to holiness.  One analogy she put forth that I really like (paraphrasing here) is that the splendor of the rose and the lily do not diminish the beauty of the humbler daisy or violet.  When God looks at the daisy or violet and smiles, they don’t wish to be roses or lilies – they are simply glad that God has decided to look at them.  I don’t think I’ll ever be a “rose” to use her analogy, but I think I might be able to pull off “daisy”.

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