Handmade Holidays

We are pretty darn broke. After being out of work for more than 2 years (but more on that later), we have scraped right on through the bottom. This really sucks during the Holidays, but I actually anticipate a fabulous Christmas this year: we are going to have an old-fashioned handmade Christmas!

Admittedly, this is probably a bit easier for me than for most (I have lots of jewelry ideas and plan on making some fused-glass ornaments). Sorry guys ;o)  But it is the thought and the heart that counts, and I can't wait to see what handmade treasures the kids come up with.

The focus of this blog is a departure from my usual discussion about what it is like to live with Narcolepsy. However, the ArtFire folk are holding a contest and the winner will get a Digital SLR camera! I could really use that camera, so here you have it... my blog about our upcoming handmade holiday.

Stay tuned, fair readers, more narcolepsy and relationship analysis to come. And some very exciting/fun information about my work life!

Cheers,
Trish

Are we REALLY going to go there? Again?

Matt and I have a crazy few weeks ahead. I am off to the NAHAC (National Association of Health Advocacy Consultants) conference in Washington DC and when I return, Matt will be leaving for the Society for Neuroscience Meeting. I'm a bit bummed about all the time we will apart. (Yes, I AM the person whose last blog addressed the fact that we are back to thinking about living apart again).

Matt -- not so much. He remains pretty unfazed, and exhibits no interest in spending extra time together in anticipation of all that time apart. Not even to squeeze in a morning trip for coffee before leaving for work. Sometimes this gets to be so much to bear: we have so very little "quality" time together, primarily because of the toll it takes on Matt when we focus on our relationship. I don't want to be needy, but it's hard to find a reasonable compromise where I get enough good time with Matt without him having too much good time with me.

So I end up spending most of my time struggling with the sadness that I feel because I'm not getting my relationship needs sufficiently met. At the same time, I understand that it isn't fair to expect all of my needs to be met in my relationship with Matt. I know I need to build more mutually supportive relationships with friends. The problem is, I get so little "good" time with Matt that I hate to spend the necessary time away from him in order to strengthen other relationships.

And so it goes, around and around in my head and in our little lives. A constant low level of depression certainly doesn't make this any better. How can I consider spending time away from Matt when so little of the time we have now is quality, marriage-sustaining time?

What a weird relationship we have. And yet we love each other, and I really, really, really don't want to lose that.

And, oh yes, after our separate trips, we are going to visit family together. Again. This did NOT go so well the last time (check back through my earliest blogs for a recap). However, my Dad has a big birthday coming up, and Matt loves him and feels it's important for him to participate. I suspect Matt will spend most of his time locked away in a room by himself, avoiding the crowd. Hopefully he'll manage to keep from experiencing status cataplecticus (those rolling, constant attacks of cataplexy that make him so very ill)!

I'll let you know how it goes. Because I am pathetically and eternally hopeful (read "in denial"), I kind of expect it to be better than the last time. Only time will tell, so stay tuned! Maybe we'll have spongecake?

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...

Hugs,
Trish

Spongecake?

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.

"Free will" redux :oD

Thank you all for your fabulous, thoughtful responses regarding the question of "free will". I loved reading each of your thoughts and stories on the subject!

It appears we are mostly leaning in the direction of yes: yes, there is such a thing as free will. At the same time, we all suspect there are times when we make decisions in a state of mind that is less than completely "free". Case in point: the schizophrenic man who is off his meds and  acting in a manner that he wouldn't if her were taking them...

Perhaps the "free" part is sometimes buried in so many layers of choices that we have trouble finding it in retrospect? There is a song by Casting Crowns called "Slow Fade" that speaks to this a bit. You can check it out here: http://www.reunionrecords.com/castingcrowns/slowfade/

I have a follow-up question, however. As a mom, I have long lamented the fact that our children may make immature, even childish decisions (an exercise of will) of which that, due to their immaturity, they may be incapable of grasping the significance/potential consequences.

Is it appropriate, then, to say that they have "free" will? Is decision-making truly free when one is unable to truly evaluate the potential outcome?

I don't know. Perhaps you have some thoughts?

One last thing I'd like to share as you ponder your response to this question:

The Casting Crowns song (above) incorporates the lyrics of an old children's hymn that kind of bothered me when I heard it. It goes something like this: "Be careful little eyes what you see (repeat). For the father up above is looking down with love; be careful little eyes what you see."

I confess that this song always seemed a bit, well, confusing to me. At once a warning (be careful what you see), simultaneously a promise of God's love (for the father up above is looking down with love).  I was never sure what the lyricist meant by the juxtaposition of those two statements.

Recently I read a book in which the author talked about an experience he had with this song that he felt put it in to perspective. He was being driven through an extremely impoverished area by a missionary friend, assailed by the incredible challenges being faced by the people whom they passed on the road. Lack of permanent housing, food instability, poor health amid filthy conditions...

Then from the back seat of the car, the missionary's daughters, who had been singing children's songs to pass the time, started singing "Be careful little eyes what you see...Be careful little feet where you go...".  And it struck the author then that this lyric was not so much a threat or admonition, but a plea to pay attention. A reminder to really SEE those who surround us and to remember that (1) God loves each of them, too, and (2) God wants us to act as conduits: to SEE and to ACT.

But back to children and free will: is it "informed" enough to be "free" will to those unable to grasp the consequences?

Inquiring minds want to know ;o)

Free will? Or is it "all about the meat"?

Hi there -- I hope you are enjoying a relaxing weekend. Or an exciting weekend. Or a (fill in the blank) weekend that is exactly what you would hope for.  :oD

I'm going to try to keep this brief, but would LOVE to hear what you think. Heck, share this with your friends, enemies and co-workers. It would be fun to get a discussion going on this:

Is there such a thing as "free will"?

As a neuroscientist who also happens to be a christian, I find that question bounces around the walls of my brain with a remarkable frequency. Matt, who is also a neuroscientist, but an atheist is firmly in the "it's all about the "meat"" camp. He believes that the chemical soup that bathes the various areas of our brains is responsible for how we feel and act at any given time. That there isn't much choice, or "will" to be tapped.

I admit he's got a point. I imagine that you, if you have ever suffered from a neurological issue such as narcolepsy, depression, bi-polar disorder or a similar challenge may also understand his point -- whether or not you actually agree with it.

I suspect that most of us have had experiences, thoughts, feelings, actions, that were modifiable via a neuro-active drug or chemical. Have you ever had a "runner's high"? I, sadly, haven't. I do, however, find that pretty much any other kind of exercise will elevate my mood, no matter how depressed or "normal" I was feeling prior to the exercise.

Pharmaceutical treatments act in much the same way. As do some "over the counter" (or "under the radar") street drugs. They change the chemical composition in an area of the brain that makes one feel, think, or act differently.

There was a sadly common story in today's Oregonian about a man with schizophrenia who refused to take his meds and eventually digressed to the point where he stabbed to death his sister who was trying to care for him. That man is a different person on and off his medications. Or at the very least, he certainly acts like a different person when he is on his meds.

So -- answer me this please: is it all about the meat? Are we pretty much a product of our brain chemistry?? Or does he or you or I have "free will". And is this really an "either/or" question?

Oh, and one last question. What do you think about the practice of forcing someone to take their medication? Some states allow this for mentally ill individuals who are deemed dangerous; others don't. What do you think? Is this every appropriate? Is it ever inappropriate?

This inquiring mind wants to know ;o)

Now go get some exercise or do something positive that makes YOU feel good!

The hair of the dog!

Hi there -- I hope you are doing fabulous on this lovely evening!

As for me, I am sitting here next to the unhappy pup, listening as Dr. Phil fixes some rude teens on the TV. I love TV -- I watch it far too much. I think I am addicted to the hope that I, too, will tidily resolving all the conflicts of my day in a single 30-60 minute time slot.

Do you ever wish that life would imitate "art" in this way?

I think Brooklyn does. At the moment she looks like she has leprosy or something. I never knew a dog could be so vain! She has been skulking around the house all day. I think she knows it is going to take a good long time for her beautiful latte-colored curls to grow back. Those bald patches really do make her look like she got into a fight with a week whacker, and the whacker won.

Yesterday started out so uneventfully. Matt was playing his computer game, we had some coffee; I took Brooklyn for a nice walk through the park.

I was feeling a bit down, missing our family, and I shared this with Matt. I decided to work out since that never fails to make me feel better.

Matt decided that he would do something nice to surprise me. Brooklyn's coat was getting a bit matted so he set about giving her a trim.

This is not the first time Matt has cut Brooklyn's hair. He's done it a couple of times now, both with rather disastrous results. And yet, all I've been able to say is "Thank you, Sweetie, for taking care of that chore".

To be honest, I would much rather he vacuum the house. Or clean the bathrooms. Or do just about anything else that needs to be done. (and that's a list that has lots of choices on it!)

But do I tell him this? Oh, no.

Why don't I tell him this? For goodness sake, he spent nearly 3 hours shaving the dog and she looks WORSE than when he started. Heck, I finished working out, showered, got a drink, tidied up the downstairs, and then joined him for a good 45 minutes while he continued to whack at her curls. And I sat there while he kept chopping away.

This weird thing happens sometimes when Matt takes his "wakey" meds: he gets so engrossed in even the simplest task that he literally can not put it down. About 2 1/2 hours into Brooklyn's "trim", I realized that this was what was happening.

So I asked him "So, Hunny, how do you know when you are finished cutting her hair?".

The pup's ears perked up, and I blotted at a couple of bald patches that were starting to bleed a little.

"Uh, I don't know. I just keep pulling up the hair and trimming until it looks like it doesn't need anymore. Hmm, I've got a couple of bald spots here" Matt replied. "Maybe I should stop and just shave it all off the next time? It will be much easier next week now that I've done all this!".

"Yeah, that sounds like a good idea" I said. But what I was thinking was "thank God!"

I don't think I can print what Brooklyn was thinking.

So now I need to figure out a gentle and kind way of re-directing Matt's attention to a different task next weekend. Perhaps the car needs an oil change? I really need to find a sufficiently manly chore.

Winter comes soon and that doggy is way too vain to let me put her in a jacket!