Hi all -- Trish here, checking in from that crazy place we call home.
It's been a weird couple of months here -- Matt's symptoms gaining in severity and me crumbling into a erratic mess of emotional dust bunnies. Work has been a bit stressful. And I realize I am NOT nearly as altruistic as I would like to think I am.
Turns out some people just s.u.c.k.
And others are just CRAZY.
Not you, gentle reader; of course not. But they are out there, and they are unavoidable.
You know what, though? All that pressure at work produced something really lovely here at home:
an opportunity for Matt to be my champion.
It's unsurprising, I suppose, that as the symptoms of Matt's narcolepsy have intensified, I have become increasingly responsible for, well, just about everything. Home, housework, family, pup...
... maintaining our relationship with each other. Monitoring and responding to changes in Matt's health, sleepiness, attitude, needs.
But I got slammed with 8 loooong weeks of incredible stress at work. The type of stress that sent my head right back to the that horrible place in California, and the panic-attack producing months of entering the building each day wondering "is this the day that I will be fired?".
Of course where the head goes, the heart often follows. And this time was no exception. That soft and vulnerable bit 'o me followed my smarts right into the dark pit.
And at the bottom of that pit, what did we find? Yep -- you got it: dust bunnies. Nothing left of Trish but about a thousand frazzled emotions scattering this way and that, elusive and completely uncontainable.
But then, my narcoleptic love braved that mess, stepped up to the challenge, and declared "it is NOT OK for people to treat my wife like that!"
And I remembered: I am loved. Matt loves me and he has my back. (grinning widely) And that is so more important, more central to what I want from life, than, well -- just about anything.
So I must send this shout out to the "mean girls" from work: thank you!
I am so very blessed to be loved by and in love with this man. Most of the time I am so focused on holding everything together, we both miss the opportunities that only occur after life seems to have fallen to dust.
And to each of you reading this: I wish you love. Find it where you can -- but also let it find you!
Showing posts with label priorities. Show all posts
Showing posts with label priorities. Show all posts
Sunday, March 6, 2011
Monday, January 24, 2011
Maybe not?
Hi all,
Been a bit crazy around here these last couple of months. I've been working a lot with HAS (http://www.hasolutions.org/) and started doing some consulting with OHAC (http://www.ohac.org/). Add the pup, the son who moved back in with us Dec. 1st, two out of town trips, and time spent on a couple of other volunteer commitments and the sum is a crazy (and very tired) Trish. Oh yes, the narcoleptic husband who SNORES very LOUDLY doesn't help ;o)
A confession about that last bit: there have been many nights when, somewhere around 3 a.m., my pillow has started looking more like a great tool for smothering my Sweetie than for resting my head. No, I'm not going to act on that urge, but I sure do hope he gets his C-pap fixed soon. Or I find some suitably comfortable ear plugs.
I don't mean to complain, just wanted to explain why my posts have been so infrequent, especially of late.
So... in case you've forgotten, let's set the stage: last time we checked in, I shared my optimism about our successful handling our November trip to California. Matt actually managed to make it through the entire Thanksgiving dinner with kids, grands and dad. I thought that, just perhaps, we might finally be figuring out how to live, in public and with family, with this disease.
Wishful thinking, it turns out. The last month and a half have been pretty bad for Matt. I have worried quite a bit that he might need to tweak his meds again. It turns out that he has been worrying about something I hadn't even allowed myself to consider: perhaps he hasn't hit the bottom quite yet. He might actually still be getting worse.
Stay tuned; more later. And this isn't necessarily bad news: more data means more information, and more information brings us closer to more effective treatment. And maybe, eventually, if we are very fortunate: a cure.
But for now, rest assured in knowing that we are OK. We will continue to be OK, and we will continue to be together. This thing is not going to beat us.
Hmmm, I take it back. We are BETTER than OK!
Been a bit crazy around here these last couple of months. I've been working a lot with HAS (http://www.hasolutions.org/) and started doing some consulting with OHAC (http://www.ohac.org/). Add the pup, the son who moved back in with us Dec. 1st, two out of town trips, and time spent on a couple of other volunteer commitments and the sum is a crazy (and very tired) Trish. Oh yes, the narcoleptic husband who SNORES very LOUDLY doesn't help ;o)
A confession about that last bit: there have been many nights when, somewhere around 3 a.m., my pillow has started looking more like a great tool for smothering my Sweetie than for resting my head. No, I'm not going to act on that urge, but I sure do hope he gets his C-pap fixed soon. Or I find some suitably comfortable ear plugs.
I don't mean to complain, just wanted to explain why my posts have been so infrequent, especially of late.
So... in case you've forgotten, let's set the stage: last time we checked in, I shared my optimism about our successful handling our November trip to California. Matt actually managed to make it through the entire Thanksgiving dinner with kids, grands and dad. I thought that, just perhaps, we might finally be figuring out how to live, in public and with family, with this disease.
Wishful thinking, it turns out. The last month and a half have been pretty bad for Matt. I have worried quite a bit that he might need to tweak his meds again. It turns out that he has been worrying about something I hadn't even allowed myself to consider: perhaps he hasn't hit the bottom quite yet. He might actually still be getting worse.
Stay tuned; more later. And this isn't necessarily bad news: more data means more information, and more information brings us closer to more effective treatment. And maybe, eventually, if we are very fortunate: a cure.
But for now, rest assured in knowing that we are OK. We will continue to be OK, and we will continue to be together. This thing is not going to beat us.
Hmmm, I take it back. We are BETTER than OK!
Saturday, December 4, 2010
We did it!
Just a quickie tonight to catch you up. Time to breathe a sigh of relief -- Matt and I made it through Thanksgiving with the family AND my Dad's birthday party without us having to turn right around and drive the 650 miles back home!
We even have the pictures to prove it :o) Thank you, MaryO, for the great photographs!
How did we do it, you ask? The key seemed to be finding a quiet room where Matt could work or play on his computer relatively undisturbed. Thus ensconced in a corner of Dad's guest room, Matt managed to keep himself mostly awake and upright on Thanksgiving AND (drum roll please) was able to emerge from the hermitage long enough to enjoy a lovely Thanksgiving with the family. Both our girls and their families, our son Joseph and my Dad, all around one dinner table for the first time in years.
Matt had moments of cataplectic muscle weakness (especially when the little ones were doing something especially cute at the table) but no full-blown attack to prevent him from joining in conversation and noshing with the rest of us.
Wow -- we were kinda like a normal family there for a bit. And we did it all over again on Saturday for Dad's birthday. Well, kind of. On Saturday Matt stayed in the guest room pretty much the entire party. Even with the isolation he had some serious attacks, probably triggered by all the noisy festivity going on outside his room. During the course of the day, Dad held court in the living room as 50 or so friends and family came by to eat, drink, and be merry.
Meanwhile, Matt granted an audience to those brave enough to enter the guest room to say "hi".
We debriefed a bit about the trip on our drive home, and agreed it worked out pretty well for both of us this time. Perhaps we are finally finding the boundaries that will allow Matt to spend some time with family but avoid triggering debilitating attacks of cataplexy?
Perhaps we just got lucky?
Hard to say without more data, but I choose hope: I think we are finally figuring it out :o)
By the way -- sorry for the radio silence. I am actually working a lot right now and loving it (though I'll love it even more when we can afford to pay me for more of the hours I work). Check it out though -- we have a website: http://www.hasolutions.org/ My job title is "Director of Research" but at the moment I am doing quite a bit of everything: research, direct service, education. No two days are the same so it keeps things interesting. It's about time I added a bit of "good" interesting to our lives!
Hugs!
Trish
We even have the pictures to prove it :o) Thank you, MaryO, for the great photographs!
How did we do it, you ask? The key seemed to be finding a quiet room where Matt could work or play on his computer relatively undisturbed. Thus ensconced in a corner of Dad's guest room, Matt managed to keep himself mostly awake and upright on Thanksgiving AND (drum roll please) was able to emerge from the hermitage long enough to enjoy a lovely Thanksgiving with the family. Both our girls and their families, our son Joseph and my Dad, all around one dinner table for the first time in years.
Matt had moments of cataplectic muscle weakness (especially when the little ones were doing something especially cute at the table) but no full-blown attack to prevent him from joining in conversation and noshing with the rest of us.
Wow -- we were kinda like a normal family there for a bit. And we did it all over again on Saturday for Dad's birthday. Well, kind of. On Saturday Matt stayed in the guest room pretty much the entire party. Even with the isolation he had some serious attacks, probably triggered by all the noisy festivity going on outside his room. During the course of the day, Dad held court in the living room as 50 or so friends and family came by to eat, drink, and be merry.
Meanwhile, Matt granted an audience to those brave enough to enter the guest room to say "hi".
We debriefed a bit about the trip on our drive home, and agreed it worked out pretty well for both of us this time. Perhaps we are finally finding the boundaries that will allow Matt to spend some time with family but avoid triggering debilitating attacks of cataplexy?
Perhaps we just got lucky?
Hard to say without more data, but I choose hope: I think we are finally figuring it out :o)
By the way -- sorry for the radio silence. I am actually working a lot right now and loving it (though I'll love it even more when we can afford to pay me for more of the hours I work). Check it out though -- we have a website: http://www.hasolutions.org/ My job title is "Director of Research" but at the moment I am doing quite a bit of everything: research, direct service, education. No two days are the same so it keeps things interesting. It's about time I added a bit of "good" interesting to our lives!
Hugs!
Trish
Tuesday, November 2, 2010
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?
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?
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...
Hugs,
Trish
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
Saturday, September 18, 2010
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!
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!
Monday, September 13, 2010
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!
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!
Friday, August 27, 2010
Puzzle pieces... On hold
Hi there. I am sorry to leave all y'all hanging yet again, but the responsibilities of a daughter's life are trumping those of a blogger's craft at the moment. I'm still in California, caring for my Dad for another week, and I don't anticipate much of an opportunity to write and post anything worthy of your time.
I'm trying to keep you minimally updated via my I-pad, but it is a much better tool for game playing (Scrabble, anyone?) than for writing. And I really want to share some more of the science of the brain with you next time, so I need access to my PDF library on my computer.
So please be patient with me: more very cool info to follow, hopefully by the end of next week. Andvin the interim, if I have the opportunity, I'll check in here.
I am sure to have cute grandchild stories if nothing else ;0)
Now I need to figure out how to share more pictures with you. I soooo miss my computer, and my live-in tech expert!
I'm trying to keep you minimally updated via my I-pad, but it is a much better tool for game playing (Scrabble, anyone?) than for writing. And I really want to share some more of the science of the brain with you next time, so I need access to my PDF library on my computer.
So please be patient with me: more very cool info to follow, hopefully by the end of next week. Andvin the interim, if I have the opportunity, I'll check in here.
I am sure to have cute grandchild stories if nothing else ;0)
Now I need to figure out how to share more pictures with you. I soooo miss my computer, and my live-in tech expert!
Monday, August 23, 2010
A happy surprise
I deplaned in California, only to be met by not one, but TWO adorable granddaughters!
We are having a "sleepover" party. I suspect there will be minimal sleeping going on...
I should be sufficiently recovered to update my blog in a day. Maybe two -- I'm not as young as I used to be.
Until I return, I leave you to ponder this: how DID I manage to get time to shower when my kids were little???
Sleepily yours, Trish. ;0)
We are having a "sleepover" party. I suspect there will be minimal sleeping going on...
I should be sufficiently recovered to update my blog in a day. Maybe two -- I'm not as young as I used to be.
Until I return, I leave you to ponder this: how DID I manage to get time to shower when my kids were little???
Sleepily yours, Trish. ;0)
Sunday, August 22, 2010
The plane, the plane!
Now that title is going to confuse any of you out there who are younger than about 40. Here's a hint though: it is an announcement that aired every week at the beginning of the TV program "Fantasy Island". When you heard Tattoo shout "the plane, the plane!" you knew that the show was about to start, and that someones fantasy was about to take them to places they had never imagined.
Living with narcolepsy and cataplexy was certainly never something Matt or I fantasized about (I think I'll keep those things to myself for now ;o) This episode of our lives however, has taken us to some places we could never have imagined.
One intriguing place we travel to frequently is the land of "what in the world is going on in Matt's brain". Yeah, I know that many of us ask that question about our significant others from time to time, but for us this is not so much a "what were you thinking?" type of question.
We really do toss around ideas about what might be going on in Matt's brain --what has happened to the neural integrity and the synaptic circuitry of his brain to disrupt his sleep and wake cycle in such a massive way?
For one type of narcolepsy, these questions are pretty far along in the process of being answered. Depending on what scientist is calculating the statistics, roughly 65-90% of narcoleptics have the disease due to what is likely to be an autoimmune assault on cells that produce a neuromodulator called hypocretin (or orexin). If you are interested in more information about this etiology, there are lots of research papers out there that explain the process and result much better than I can here.
So, what about the other 10-35% of narcoleptics? There isn't nearly as much research or as many answers for these individuals. But Matt has been giving this a lot of thought (in his "spare" time) for the last couple of years. And, lucky for me, I enjoy tossing ideas and hypotheses back and forth with him. Almost as exciting: this is one activity that thankfully does not put him to sleep :o)
Is it a coincidence that Matt is a neuroscience researcher? That I, too, have a doctoral degree (in physiology) with my doctoral and post-doctoral research all focused on the activity of the brain? You know, I don't think so. After all, my man Grissom would say "there's no such thing as a coincidence".
So here we are, spending some of our "fun" time together debatingabout what in the world is going on in Matt's brain. Yeah I know, it's a geeky thing, but discussing neuroscience is something we both love to do. That said, for two people whose only "knowledge" about narcolepsy (and yes, I do use the term "knowledge" very loosely) was gleaned from fictional characters on TV, in movies or books, neither one could have anticipated that this particular scientific mystery would become such a huge focus of our life together.
It's actually a lot easier now than it was the first few years of Matt's illness, particularly the two years Matt struggled to get a diagnosis and the first year of treatment. In those days we were pretty overwhelmed with the chore of trying to adapt to this new reality. And Matt complained. A lot.
To be fair, he was pretty scared. His body and brain had turned traitor on him and he struggled just to do the things he absolutely had to to get through every single day. The disease really claimed our lives completely during that time.
I used to think of it as "all narcolepsy, all the time".
Matt seemed incapable of having a discussion with me about anything but how tired he was, or what weird thing his body was doing now. It's a bit of a relief to be able to focus on other things now. Even if our main focus tends to be that singular question: "what is going on in Matt's brain?".
So, it's become a bit of a thought puzzle. We take it out several times a week, look at the pieces we have, and add any new pieces that we've found since the last time we tried to put it together.
I'd like to talk more about the puzzle next time, but let me leave you this to ponder:
Matt had a terrible couple of days on Friday and Saturday. He had many more attacks of cataplexy and needed more naps than he usually does. Why did Matt have more attacks?
This is the very question that led us to discover a new puzzle piece.
Living with narcolepsy and cataplexy was certainly never something Matt or I fantasized about (I think I'll keep those things to myself for now ;o) This episode of our lives however, has taken us to some places we could never have imagined.
One intriguing place we travel to frequently is the land of "what in the world is going on in Matt's brain". Yeah, I know that many of us ask that question about our significant others from time to time, but for us this is not so much a "what were you thinking?" type of question.
We really do toss around ideas about what might be going on in Matt's brain --what has happened to the neural integrity and the synaptic circuitry of his brain to disrupt his sleep and wake cycle in such a massive way?
For one type of narcolepsy, these questions are pretty far along in the process of being answered. Depending on what scientist is calculating the statistics, roughly 65-90% of narcoleptics have the disease due to what is likely to be an autoimmune assault on cells that produce a neuromodulator called hypocretin (or orexin). If you are interested in more information about this etiology, there are lots of research papers out there that explain the process and result much better than I can here.
So, what about the other 10-35% of narcoleptics? There isn't nearly as much research or as many answers for these individuals. But Matt has been giving this a lot of thought (in his "spare" time) for the last couple of years. And, lucky for me, I enjoy tossing ideas and hypotheses back and forth with him. Almost as exciting: this is one activity that thankfully does not put him to sleep :o)
Is it a coincidence that Matt is a neuroscience researcher? That I, too, have a doctoral degree (in physiology) with my doctoral and post-doctoral research all focused on the activity of the brain? You know, I don't think so. After all, my man Grissom would say "there's no such thing as a coincidence".
So here we are, spending some of our "fun" time together debatingabout what in the world is going on in Matt's brain. Yeah I know, it's a geeky thing, but discussing neuroscience is something we both love to do. That said, for two people whose only "knowledge" about narcolepsy (and yes, I do use the term "knowledge" very loosely) was gleaned from fictional characters on TV, in movies or books, neither one could have anticipated that this particular scientific mystery would become such a huge focus of our life together.
It's actually a lot easier now than it was the first few years of Matt's illness, particularly the two years Matt struggled to get a diagnosis and the first year of treatment. In those days we were pretty overwhelmed with the chore of trying to adapt to this new reality. And Matt complained. A lot.
To be fair, he was pretty scared. His body and brain had turned traitor on him and he struggled just to do the things he absolutely had to to get through every single day. The disease really claimed our lives completely during that time.
I used to think of it as "all narcolepsy, all the time".
Matt seemed incapable of having a discussion with me about anything but how tired he was, or what weird thing his body was doing now. It's a bit of a relief to be able to focus on other things now. Even if our main focus tends to be that singular question: "what is going on in Matt's brain?".
So, it's become a bit of a thought puzzle. We take it out several times a week, look at the pieces we have, and add any new pieces that we've found since the last time we tried to put it together.
I'd like to talk more about the puzzle next time, but let me leave you this to ponder:
Matt had a terrible couple of days on Friday and Saturday. He had many more attacks of cataplexy and needed more naps than he usually does. Why did Matt have more attacks?
This is the very question that led us to discover a new puzzle piece.
Saturday, August 21, 2010
Dinner... on hold
Thank you all -- Matt and I both really appreciate your comments.
We, too, were a bit disappointed that the focus of the ABC program was so narrow, but they clearly wanted to fit our story into their theme for the program "The Brain and Love". We think it unfortunate and misleading that narcolepsy was portrayed as being "strange" and "rare". We really did try to communicate that it is surprisingly common (1/2000 individuals suffer from narcolepsy), and that informing others about this was the reason we said "yes" to doing the program.
Matt's case is a bit atypical in that the cataplexy is more debilitating for him than the excess daytime sleepiness is, especially when he is on his meds. We had about 10 weeks at the beginning of the year when he had trouble getting the anti-cataplexy medication (insurance company change) and that hit him very hard. After the first week or so he was unable to work and what work he did do was pretty much done from home. I hope we don't have a repeat of that this January!
So, about the meds (he has worked really hard to get the right type and balance of stimulants and Tx for cataplexy): he mostly does OK in terms of sleepiness (needs very few naps) and the cataplexy is pretty well controlled for most triggers.
The one trigger that overwhelms him still is very strong positive emotion. We had friends over for dinner last night (first time since last Thanksgiving!) and after visiting with them for about 20 minutes, Matt had to go lay down and was out for about 90 minutes. I had roast chicken getting cold on the counter, pasta water boiling away on the stove, muffins baking in the oven... and was really thankful I had thought to throw together some appetizers. The three of us chatted and snacked until Matt was able to get up again, then we ate dinner in stages, since the chicken and muffins were done but the pasta still needed to be cooked and tossed together.
Some of you had questions for us -- I am on day #2 of a migraine, and have to limit my time at the keyboard, but I will try to get back to you in a day or two.
Meanwhile, thank you for understanding. And if you get the chance, please go hug someone you love for me. I'm gonna go cuddle the pup for a bit :o) Isn't she just the cutest puppy ever??!!
Hugs!
We, too, were a bit disappointed that the focus of the ABC program was so narrow, but they clearly wanted to fit our story into their theme for the program "The Brain and Love". We think it unfortunate and misleading that narcolepsy was portrayed as being "strange" and "rare". We really did try to communicate that it is surprisingly common (1/2000 individuals suffer from narcolepsy), and that informing others about this was the reason we said "yes" to doing the program.
Matt's case is a bit atypical in that the cataplexy is more debilitating for him than the excess daytime sleepiness is, especially when he is on his meds. We had about 10 weeks at the beginning of the year when he had trouble getting the anti-cataplexy medication (insurance company change) and that hit him very hard. After the first week or so he was unable to work and what work he did do was pretty much done from home. I hope we don't have a repeat of that this January!
So, about the meds (he has worked really hard to get the right type and balance of stimulants and Tx for cataplexy): he mostly does OK in terms of sleepiness (needs very few naps) and the cataplexy is pretty well controlled for most triggers.
The one trigger that overwhelms him still is very strong positive emotion. We had friends over for dinner last night (first time since last Thanksgiving!) and after visiting with them for about 20 minutes, Matt had to go lay down and was out for about 90 minutes. I had roast chicken getting cold on the counter, pasta water boiling away on the stove, muffins baking in the oven... and was really thankful I had thought to throw together some appetizers. The three of us chatted and snacked until Matt was able to get up again, then we ate dinner in stages, since the chicken and muffins were done but the pasta still needed to be cooked and tossed together.
Some of you had questions for us -- I am on day #2 of a migraine, and have to limit my time at the keyboard, but I will try to get back to you in a day or two.
Meanwhile, thank you for understanding. And if you get the chance, please go hug someone you love for me. I'm gonna go cuddle the pup for a bit :o) Isn't she just the cutest puppy ever??!!
Hugs!
Thursday, August 19, 2010
Not bad, not bad at all...
I had a glorious moment of being more "tech savvy" than Matt this morning. Yes, I am gloating. I need to celebrate those little victories as they happen. No need to remind me that the poor man was half asleep and not at his best, I have no shame when it comes to pouncing on any advantage I can get.
Matt was pretty stoked to see the short clip on the ABC website and to read the accompanying story (http://abcnews.go.com/Nightline/Sleep/oregon-man-paralyzed-feelings-love/story?id=11410135 ). I was "Silly Sweetie, let me show you the rest of story" -smug as I led him to the longer version of the piece.
Rats. I should link to the longer version here, but it's on my DVR. I don't know how to get something off the DVR and onto my blog. Sheesh -- this is totally ruining my whole "tech savvy" claim, isn't it?
Oh well, I did manage to record the piece and surprise Matt with it. And I know that this need to gloat over that very brief victory may seem small-minded of me, but the man is ridiculously smart. He knows his way equally well around a computer or a brain, and he positively slaughters me at "Clue" every single time we play. I, on the other hand, am still in the "trial and error" phase of using our Wii, a full year after we brought it home. And I can't figure out how to share the darn Nightline video clip on my blog.
So, I sat with Matt this morning and showed him the clip they showed on Nightline last night. Amazingly, he actually managed to get through the whole thing without having a full-on attack of cataplexy. When the scenes from our wedding flashed on the screen, he started to slump, and turned away briefly, but he recovered enough to be able to watch the whole thing straight through.
I'm sorry to digress, (again!) but I must say this: it was really fun (for me) to see our young selves laughing and smooching and eating cake as we anticipated our future together. This footage is not an illustration of what we have lost, but a reminder that we have been blessed with many wonderful times together. Those past experiences help to sustain us both through the harder times and they help to remind us of how fortunate we are to be going through this life together.
Back to the episode on Nightline last night: our immediate response -- not bad, not bad at all. Because I am a bit of a skeptic and a worrier, I will withhold final judgement until after tonight's show.
So far, however, the ABC folk have done a pretty decent job of showing what it can be like to live with narcolepsy. They've covered our story with sensitivity and tact when they could easily have gone for schmaltz or sensationalism. I hope that others of you who are living with narcolepsy are finding this to be a reasonably accurate portrayal of the strange constraints this disease often forces upon our relationships.
To those of you who are "narco-curious", please note that this is only one small part of the story. Heck, it's only a small part of the story of Matt and I. There are literally hundreds of thousands of other stories out there. Take a look at some of the other blogs by people living with narcolepsy; several of those who are following this blog are also narcoleptic. Just click on a fellow blogger's name to check out another story. You also might want to drop by the Narcolepsy Network website: http://www.narcolepsynetwork.org/ and browse away.
And if you have any questions -- ask me; I am always just an email away!
I'm pretty good at email. Just don't ask me to program the DVR or turn on the Wii. ;oD
Sweet dreams!
Matt was pretty stoked to see the short clip on the ABC website and to read the accompanying story (http://abcnews.go.com/Nightline/Sleep/oregon-man-paralyzed-feelings-love/story?id=11410135 ). I was "Silly Sweetie, let me show you the rest of story" -smug as I led him to the longer version of the piece.
Rats. I should link to the longer version here, but it's on my DVR. I don't know how to get something off the DVR and onto my blog. Sheesh -- this is totally ruining my whole "tech savvy" claim, isn't it?
Oh well, I did manage to record the piece and surprise Matt with it. And I know that this need to gloat over that very brief victory may seem small-minded of me, but the man is ridiculously smart. He knows his way equally well around a computer or a brain, and he positively slaughters me at "Clue" every single time we play. I, on the other hand, am still in the "trial and error" phase of using our Wii, a full year after we brought it home. And I can't figure out how to share the darn Nightline video clip on my blog.
So, I sat with Matt this morning and showed him the clip they showed on Nightline last night. Amazingly, he actually managed to get through the whole thing without having a full-on attack of cataplexy. When the scenes from our wedding flashed on the screen, he started to slump, and turned away briefly, but he recovered enough to be able to watch the whole thing straight through.
I'm sorry to digress, (again!) but I must say this: it was really fun (for me) to see our young selves laughing and smooching and eating cake as we anticipated our future together. This footage is not an illustration of what we have lost, but a reminder that we have been blessed with many wonderful times together. Those past experiences help to sustain us both through the harder times and they help to remind us of how fortunate we are to be going through this life together.
Back to the episode on Nightline last night: our immediate response -- not bad, not bad at all. Because I am a bit of a skeptic and a worrier, I will withhold final judgement until after tonight's show.
So far, however, the ABC folk have done a pretty decent job of showing what it can be like to live with narcolepsy. They've covered our story with sensitivity and tact when they could easily have gone for schmaltz or sensationalism. I hope that others of you who are living with narcolepsy are finding this to be a reasonably accurate portrayal of the strange constraints this disease often forces upon our relationships.
To those of you who are "narco-curious", please note that this is only one small part of the story. Heck, it's only a small part of the story of Matt and I. There are literally hundreds of thousands of other stories out there. Take a look at some of the other blogs by people living with narcolepsy; several of those who are following this blog are also narcoleptic. Just click on a fellow blogger's name to check out another story. You also might want to drop by the Narcolepsy Network website: http://www.narcolepsynetwork.org/ and browse away.
And if you have any questions -- ask me; I am always just an email away!
I'm pretty good at email. Just don't ask me to program the DVR or turn on the Wii. ;oD
Sweet dreams!
Sunday, August 15, 2010
Staying on top of the game...
For you to understand this thing that is keeping me awake nights, I think I must reveal an embarrassing secret that I haven't shared before. About 14 years ago, as we were deciding whether or not to get married, Matt confessed to me that I was NOT the most important part of his life. Seriously. And he said it in front of a witness, the pre-marital counselor whom I had insisted we work with before we said our "I dos".
Not the easiest thing to hear from the person you want to spend the rest of your life with, is it? Especially when the one thing that your beloved is adamantly more committed to than you is also one thing that you very well know may end up tearing you apart. Matt honestly tried very hard to get it through my stubborn mind that if it came down to a choice between our relationship and his career, he would choose his job over me.
Yeah I know, pathetic. But I married him anyway. Why? Because I loved him. Because I didn't really allow myself to believe what he said. Because I chose to believe that if it came down to that choice, he would ultimately choose me. Not terribly fair to Matt. Maybe not fair to me, either, but there you have it.
Oh yeah -- you probably want to know; what is the most important thing to Matt? (Drum roll please): his career in neuroscience research. Yep -- his job. His job was, and perhaps remains, more important to him than pretty much anything.
No, I haven't asked him if I am still #2 in his life. I think I am a bit afraid of knowing that answer. I prefer to remain ignorant, to simply recognize the importance of his career. To support him as he does absolutely everything he can to maintain a career that he believes defines the very essence of who he is.
Frankly I think Matt, in turn, brings a lot to the field of Neuroscience, but that is another post entirely. :o)
So the other night, Matt aired his own doubts. For the first time, he admitted aloud that he thinks that this horrid disease is ultimately going to win. In spite of the medicine regime he is on, Matt fights constant exhaustion and multiple attacks of paralysis every day. It has become so difficult for him to complete everything he needs to do as a member of the research and teaching faculty that Matt has begun to think it unlikely that he will be able to sustain his work in this highly competitive profession.
I hope so very very much that Matt is wrong about this. But I confess: I'm really worried. I toss and turn at night, wide awake as the sleep that eludes me claims his body once again. I hate that it might claim his dreams as well.
I want my husband to have those things that are important to him. And when it comes down to it -- it is unimportant to me whether his career still tops that list. I just want him to succeed, and be happy.
Is this possible?
Not the easiest thing to hear from the person you want to spend the rest of your life with, is it? Especially when the one thing that your beloved is adamantly more committed to than you is also one thing that you very well know may end up tearing you apart. Matt honestly tried very hard to get it through my stubborn mind that if it came down to a choice between our relationship and his career, he would choose his job over me.
Yeah I know, pathetic. But I married him anyway. Why? Because I loved him. Because I didn't really allow myself to believe what he said. Because I chose to believe that if it came down to that choice, he would ultimately choose me. Not terribly fair to Matt. Maybe not fair to me, either, but there you have it.
Oh yeah -- you probably want to know; what is the most important thing to Matt? (Drum roll please): his career in neuroscience research. Yep -- his job. His job was, and perhaps remains, more important to him than pretty much anything.
No, I haven't asked him if I am still #2 in his life. I think I am a bit afraid of knowing that answer. I prefer to remain ignorant, to simply recognize the importance of his career. To support him as he does absolutely everything he can to maintain a career that he believes defines the very essence of who he is.
Frankly I think Matt, in turn, brings a lot to the field of Neuroscience, but that is another post entirely. :o)
So the other night, Matt aired his own doubts. For the first time, he admitted aloud that he thinks that this horrid disease is ultimately going to win. In spite of the medicine regime he is on, Matt fights constant exhaustion and multiple attacks of paralysis every day. It has become so difficult for him to complete everything he needs to do as a member of the research and teaching faculty that Matt has begun to think it unlikely that he will be able to sustain his work in this highly competitive profession.
I hope so very very much that Matt is wrong about this. But I confess: I'm really worried. I toss and turn at night, wide awake as the sleep that eludes me claims his body once again. I hate that it might claim his dreams as well.
I want my husband to have those things that are important to him. And when it comes down to it -- it is unimportant to me whether his career still tops that list. I just want him to succeed, and be happy.
Is this possible?
Subscribe to:
Posts (Atom)