Thank you for visiting!

Thank you for visiting!

Wednesday, October 27, 2010

To stay or go...?

We had another one of those weird talks today: discussing whether it might be better for Matt to have me live separately from him.

If you've read my earlier posts, you know that this isn't the first time we have had this discussion. I suppose the weirder discussion was the one where we debated the pros and cons of me moving back into the house with Matt. How many happily married couples have had to ask themselves that question -- should we move in together?

We love each other; heck, we even like each other! And we really enjoy living in the same space.

But it does take a toll on Matt's health. As he put it today, he feels better (finds it easier to fight off attacks of cataplexy) on weekdays than he does on weekends (when we are together pretty much 24/7), and he finds it easier yet when I am out of town.

Matt and I are not "just" spouses, we are best friends. We like to be together and want to share our lives into the future. We have found a balance of sorts at home that kind of "works" (though is not without significant cost to Matt's health).

Hmmm... I wonder if even Dr. Phil would be able to help us evaluate these choices? We could certainly use all the help we can get.

Stay tuned, kids -- this discussion ain't goin' anywhere unless and until someone cures this terrible disease. Because I love the one I'm with, even when I can't be with him.

I promise to update you as we continue to figure it out...


Tuesday, October 19, 2010


Hi there,

Ya gotta love the auto spell check feature -- it's fuzzy "brain" decided that when I typed "hypnogogic" I meant to type "spongecake". That's just too weird to wrap my head around when my head is still throbbing from the migraine I woke up with...

Geeze I stink at this! Sorry for the long silence. I hate to say that I've been too tired (or sick) to update regularly, but it's the truth. My apologies to those of you who have narcolepsy, I know my tiredness pales by comparison. It is a seldom discusses side effect of being partnered with someone who has narcolepsy, however. That interrupted sleep tends to be a shared experience. Add that to my lovely hot flashes (whoopee!) and the migraines and the sum = totally wiped out Trish.

And oh, yeah, I'm working (pro bono at present) -- getting ready to launch Health Advocacy Solutions' Medicare plan selection service in time for open enrollment. One might think that the totally snooze-erific reading I am doing to become our "Medicare Diva" would help me get and stay more rested, but no such luck ;o)

OK, a bit about Matt (since most of you are here because of his experiences with narcolepsy). He just recently returned home after attending the Narcolepsy Network meeting. His experiences there were pretty varied. There is a large population of people (primarily narcoleptics and a select few researchers) who are lobbying to exclude those who are hypocretin-normal from the diagnosis of narcolepsy. There are some pretty negative consequences associated with that decision, not the least of which is the potential that this will also exclude these narcoleptics from access to treatments for the disease.

So, Matt had a few rather "interesting" discussions with people at the meeting who think it is unfortunate that he "has been mis-diagnosed as narcoleptic". Many were surprised to be told that about 25% of narcoleptics do not have mutations in their hypocretin-producing neurons.

They do, however, tend to respond just as well as others to treatments for narcolepsy. They also experience attacks of cataplexy (historically considered a defining characteristic of the disease), excessive daytime sleepiness, hypnogogic hallucinations and sleep paralysis.

This could get messy; that's the reason Matt wanted me to stay home rather than attend. I'm not as patient as he is. I would probably not play nearly as nicely as he did with those who insist that he doesn't really have this disease that has devastated our family and decimated our lives.

More later, I'm still too angry about Matt's treatment to think (or type) straight.