My other half is gone. I didn't realize that's what she was until now. I had to put Jessie to sleep last week. She suddenly had trouble breathing and it turned out she had advanced lung cancer and there was nothing that could be done to help her. I couldn't let her suffer though I was so not ready to let her go. Letting her go was about the most gut wrenching thing I've felt in awhile.
She was this big beautiful exuberant lug of a German Shepherd. We were together pretty much 24/7. I realize now she was literally a part of me, my other half. We were a pair. I'd look over at her to see what she thought of who ever had entered the room, and she'd look at me to see what I thought. She was much kinder to people than me though. That kindness taught me a lot about life. If she could have talked we would have been finishing each other's sentences.
I always marvel at how pets do that; how they become so attuned. I finally figured out a few years ago that she viewed me as her job. That was a somewhat humbling realization. I needed looking after in her estimation. In return I tried not to be too obvious about having to look after her, particularly as she got older and simple things became harder for her to do. I didn't want her to think she was letting me down in any way. I told her if the positions were reversed you'd do the same for me so don't worry.
I can't seem to get past the grief of loosing her. At first all I wanted was another dog, another Shepherd. I missed having a dog almost as much as I missed her. But I look at rescue and shelter and breeder sites and all I think when I stare into the eyes of all those dogs is that they're not Jessie.
Perhaps it was a mistake having her with me all the time. On the other hand I'm glad I was there for so much more of her life. So I don't know. I suppose there's another dog out there somewhere who belongs with me, I'm just having trouble imagining that right now.
Monday, February 23, 2009
Thursday, January 29, 2009
HLA-DQ 1,1
I should have paid more attention in High School biology. It might have helped. It might not have. I'm awash in a sea of DQ's and I am fighting for every bit of understanding. The more I read it the more I glean from it, but the definitive answers I want don't appear to be there.
I took a gene test to determine which gluten sensitive genes I posses. I've seen estimates that as much as 60% of the population has one or more of the genes. Problem is they just aren't sure what it all means. They have some idea that certain genes are worse than others, and they've begun to understand that different genes can cause different symptoms and present different challenges for gluten sensitivity. But the science is far from exact. I have two copies of a gene they seem to be calling HLA-DQ 1. I say seem to because apparently even the protocol for naming genes is an ever evolving one. Everyone has sets of genes, with one gene in the set coming from their mother and one from their father. I received the very same gene from both of my parents; the DQ 1. According to the literature a double DQ 1 gene means the sensitivity is more pronounced and probably unavoidable. It is a gluten sensitive gene and it's most associated with gluten ataxia. Ataxia is a word I didn't know until today. I could probably have gone the rest of my life without hearing it.
I read today about something they call the Romberg Test for Ataxia where a patient stands with their feet together and their eyes closed. That's it, that's all. I read the description of that test and immediately thought, "Well, no one can do that." Well, actually most people can it turns out. But I have never been able to. I'm better than I used to be, but standing with my feet together and my eyes closed I start to wobble and run the risk of falling over. Hell, it's a miracle I haven't fallen off my treadmill yet my balance is so terrible. My balance has improved in the last two years, but it's obvious even to me that some things are never coming back. They know that a gluten free diet improves balance and coordination in affected people, but they don't know whether or not it can reverse all of the damage that's already been done. On the up side I don't fall down anymore so I guess I should be grateful.
But the part that got to me, that freaked me out is that gluten can actually change the cerebellum, leaving deposits and changing the shape and function of the part of the brain most responsible for balance and movement and coordination. This freaking gene and the subsequent gluten sensitivity has altered the very make up of my brain. There are mentions of links between ataxia and Alzheimer's and dementia as well as schizophrenia MS and several other things.
Maybe it's just me. Maybe I live in my head too much. Maybe other people don't. I don't know. There's this huge disconnect between my thoughts and the fact that I'm a physical being dependent on things like the structure of my brain for cogent thought. I'm anchored to this body and that's a hard thing to process for some reason. I can't transcend the physical body. I'm bound by its health and abilities. And that makes me angry.
More than that it scared me, more than anything else on this journey through gluten hell has. And I'm mad. And I'm confused by all the uncertainties. And dammit none of this makes sense. Why me. But of course me.
Someone somewhere posted a snip from Slaughterhouse Five this afternoon on a local website.
Tralfamadorian speaker: We know how the world ends and it has nothing to do with Earth, except that it gets wiped out too.
Billy Pilgrim: Really? How does it end?
Tralfamadorian speaker: While we're experimenting with new fuels, a Tralfamadorian test pilot panics, presses the wrong button, and the whole universe disappears.
Billy Pilgrim: But you have to stop him. If you know this, can't you keep the pilot from pressing ...
Tralfamadorian speaker: He has always pressed it, and he always will. We have always let him, and we always will let him. The moment is structured that way.
What is meant to be will be. You can't go back and change it, and even if you could it would do no good because what's meant to be will always find a way in the end. Everything has a point and purpose.
But accepting that is a struggle.
I took a gene test to determine which gluten sensitive genes I posses. I've seen estimates that as much as 60% of the population has one or more of the genes. Problem is they just aren't sure what it all means. They have some idea that certain genes are worse than others, and they've begun to understand that different genes can cause different symptoms and present different challenges for gluten sensitivity. But the science is far from exact. I have two copies of a gene they seem to be calling HLA-DQ 1. I say seem to because apparently even the protocol for naming genes is an ever evolving one. Everyone has sets of genes, with one gene in the set coming from their mother and one from their father. I received the very same gene from both of my parents; the DQ 1. According to the literature a double DQ 1 gene means the sensitivity is more pronounced and probably unavoidable. It is a gluten sensitive gene and it's most associated with gluten ataxia. Ataxia is a word I didn't know until today. I could probably have gone the rest of my life without hearing it.
I read today about something they call the Romberg Test for Ataxia where a patient stands with their feet together and their eyes closed. That's it, that's all. I read the description of that test and immediately thought, "Well, no one can do that." Well, actually most people can it turns out. But I have never been able to. I'm better than I used to be, but standing with my feet together and my eyes closed I start to wobble and run the risk of falling over. Hell, it's a miracle I haven't fallen off my treadmill yet my balance is so terrible. My balance has improved in the last two years, but it's obvious even to me that some things are never coming back. They know that a gluten free diet improves balance and coordination in affected people, but they don't know whether or not it can reverse all of the damage that's already been done. On the up side I don't fall down anymore so I guess I should be grateful.
But the part that got to me, that freaked me out is that gluten can actually change the cerebellum, leaving deposits and changing the shape and function of the part of the brain most responsible for balance and movement and coordination. This freaking gene and the subsequent gluten sensitivity has altered the very make up of my brain. There are mentions of links between ataxia and Alzheimer's and dementia as well as schizophrenia MS and several other things.
Maybe it's just me. Maybe I live in my head too much. Maybe other people don't. I don't know. There's this huge disconnect between my thoughts and the fact that I'm a physical being dependent on things like the structure of my brain for cogent thought. I'm anchored to this body and that's a hard thing to process for some reason. I can't transcend the physical body. I'm bound by its health and abilities. And that makes me angry.
More than that it scared me, more than anything else on this journey through gluten hell has. And I'm mad. And I'm confused by all the uncertainties. And dammit none of this makes sense. Why me. But of course me.
Someone somewhere posted a snip from Slaughterhouse Five this afternoon on a local website.
Tralfamadorian speaker: We know how the world ends and it has nothing to do with Earth, except that it gets wiped out too.
Billy Pilgrim: Really? How does it end?
Tralfamadorian speaker: While we're experimenting with new fuels, a Tralfamadorian test pilot panics, presses the wrong button, and the whole universe disappears.
Billy Pilgrim: But you have to stop him. If you know this, can't you keep the pilot from pressing ...
Tralfamadorian speaker: He has always pressed it, and he always will. We have always let him, and we always will let him. The moment is structured that way.
What is meant to be will be. You can't go back and change it, and even if you could it would do no good because what's meant to be will always find a way in the end. Everything has a point and purpose.
But accepting that is a struggle.
Wednesday, January 7, 2009
Just Ask
If you ask the "universe" often times it answers, or at least helps you figure out what the answers are. I put two and two together last night. Well, actually this morning.
I had a series of dreams last night that I remembered this morning. I don't always remember dreams, but these seem to have intentionally stuck in my brain at least enough to finally make the connections happen. I dreamed about the house I grew up in. In the dream someone had walled over the front door of the house. Where the door should have been there was just stucco. Literally I could no longer go inside. And I can't. The house belongs to someone else now which is an idea I'm still getting used to. I wonder if they're happy there? I wonder if they survived the ARM crunch? I wonder if they love how the sun comes in the living room windows in the afternoon?
I also dreamed about the car I used to own which is now also gone. Gone from my life. So many things are gone.
I found out last week, Christmas Eve that my cousin is being treated for rectal cancer. She's undergoing chemo and radiation. She's fighting for her life. She and I share the same middle name. Why in the hell both our mothers had to fucking do that to us mystifies me to this day. What the hell were they thinking? It was my grandmother's middle name, but you know, it's not like there was much more to it than that. Great grandmother named her daughter after a silent screen actress so our middle name was someones last name. And no, I'm not publicly saying which one because then the whole freaking world would know my middle name and quite frankly it's stupid. No white kid from Pacoima should have that as a middle name. Let alone some white kid from Pacoima who's mother was born and raised in Oklahoma. Long story, but trust me on this.
Anyway, when I heard about Teri I was stunned, saddened but not surprised. Her son has been battling POEM's disease for a couple years now. How terribly hard for all of them. I can't imagine what that is like.
I wasn't surprised because rectal cancer is a digestive cancer. People with untreated Celiac Disease are prone to digestive cancers. Some numbers give them a 50% higher risk than the average population. With treatment, which is a gluten free diet, the numbers go down significantly, returning to normal after a year or so.
I carry a Celiac gene, that's pretty obvious. Which one and in what combination I don't yet know. It's possible I inherited a double gene. I'm pretty sure my mother had Celiacs. I would not be surprised if my father did too. I finally ordered a gene test to try and find out. While it no longer matters to me which gene or genes I have, I'm hoping I can use it to convince my siblings, at the very least my siblings, to get tested for Celiacs. My mother's entire family should be tested, but most people don't want to know. My siblings don't want to know. My sister is truly mystified as to where I could have gotten this "rogue gene". The odds are good she carries the same gene. but she'd rather pretend I'm some how extraordinary.
And that's why silence scares me. In theory I'm in a better place now because I'm gluten free. But the years, decades, maybe a lifetime of eating gluten have already taken a toll on my body. I know that, I experience that every day. I regret not knowing, and I'm angry at doctors who never had a clue. But what can you do? You can't go back and relive your life. This is the life you're handed, the one you're meant to live.
It may have already shortened my life, and the lives of people I love. And I get angry all over again at the way whole grain products have been pushed down our throats by a government trying to artificially support it's farmers. I see that stupid food pyramid and all I see is blatant commercialism in the guise of healthy living. Whole grains kill.
The silence I now fear is mortality. Teri's battle brought that home to me to live.
I wonder if anyone ever dies thinking "I did it all, everything I wanted and I have no regrets"? I've never known anyone who died who felt that way. It's not the dying I fear I don't think. Either there is something after this physical life or there isn't. Either way works. It's this nagging sense that perhaps I'm not doing it right; living that is. It's not even about regrets. I want some guarantee that I did what I was supposed to do here; some nod from some God that says I'm on schedule and headed in the right direction.
Does knowing about the silence stop the fear? I don't know yet. Time will tell. I need to figure out what to do with all this. How do I guarantee that when I die I do so thinking I covered all the bases I was supposed to cover? How do you do that?
I had a series of dreams last night that I remembered this morning. I don't always remember dreams, but these seem to have intentionally stuck in my brain at least enough to finally make the connections happen. I dreamed about the house I grew up in. In the dream someone had walled over the front door of the house. Where the door should have been there was just stucco. Literally I could no longer go inside. And I can't. The house belongs to someone else now which is an idea I'm still getting used to. I wonder if they're happy there? I wonder if they survived the ARM crunch? I wonder if they love how the sun comes in the living room windows in the afternoon?
I also dreamed about the car I used to own which is now also gone. Gone from my life. So many things are gone.
I found out last week, Christmas Eve that my cousin is being treated for rectal cancer. She's undergoing chemo and radiation. She's fighting for her life. She and I share the same middle name. Why in the hell both our mothers had to fucking do that to us mystifies me to this day. What the hell were they thinking? It was my grandmother's middle name, but you know, it's not like there was much more to it than that. Great grandmother named her daughter after a silent screen actress so our middle name was someones last name. And no, I'm not publicly saying which one because then the whole freaking world would know my middle name and quite frankly it's stupid. No white kid from Pacoima should have that as a middle name. Let alone some white kid from Pacoima who's mother was born and raised in Oklahoma. Long story, but trust me on this.
Anyway, when I heard about Teri I was stunned, saddened but not surprised. Her son has been battling POEM's disease for a couple years now. How terribly hard for all of them. I can't imagine what that is like.
I wasn't surprised because rectal cancer is a digestive cancer. People with untreated Celiac Disease are prone to digestive cancers. Some numbers give them a 50% higher risk than the average population. With treatment, which is a gluten free diet, the numbers go down significantly, returning to normal after a year or so.
I carry a Celiac gene, that's pretty obvious. Which one and in what combination I don't yet know. It's possible I inherited a double gene. I'm pretty sure my mother had Celiacs. I would not be surprised if my father did too. I finally ordered a gene test to try and find out. While it no longer matters to me which gene or genes I have, I'm hoping I can use it to convince my siblings, at the very least my siblings, to get tested for Celiacs. My mother's entire family should be tested, but most people don't want to know. My siblings don't want to know. My sister is truly mystified as to where I could have gotten this "rogue gene". The odds are good she carries the same gene. but she'd rather pretend I'm some how extraordinary.
And that's why silence scares me. In theory I'm in a better place now because I'm gluten free. But the years, decades, maybe a lifetime of eating gluten have already taken a toll on my body. I know that, I experience that every day. I regret not knowing, and I'm angry at doctors who never had a clue. But what can you do? You can't go back and relive your life. This is the life you're handed, the one you're meant to live.
It may have already shortened my life, and the lives of people I love. And I get angry all over again at the way whole grain products have been pushed down our throats by a government trying to artificially support it's farmers. I see that stupid food pyramid and all I see is blatant commercialism in the guise of healthy living. Whole grains kill.
The silence I now fear is mortality. Teri's battle brought that home to me to live.
I wonder if anyone ever dies thinking "I did it all, everything I wanted and I have no regrets"? I've never known anyone who died who felt that way. It's not the dying I fear I don't think. Either there is something after this physical life or there isn't. Either way works. It's this nagging sense that perhaps I'm not doing it right; living that is. It's not even about regrets. I want some guarantee that I did what I was supposed to do here; some nod from some God that says I'm on schedule and headed in the right direction.
Does knowing about the silence stop the fear? I don't know yet. Time will tell. I need to figure out what to do with all this. How do I guarantee that when I die I do so thinking I covered all the bases I was supposed to cover? How do you do that?
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