I'm so damn tired of this stupid disease. I just want to be normal.
I grilled three weekends ago. It made me sick. I grilled two weekends ago. It made me sick. Last week I figured out why. Many charcoal manufacturers use wheat as binding and filler in charcoal. I was literally burning wheat, inhaling it and eating the wheat ash on my food. And of course I buy the cheap store brand match light charcoal which is more likely to use larger amounts of filler and binder. When I bought the charcoal the pure wood charcoal and kingsford were about the same price and the store brand was significantly cheaper. So not knowing any better I bought the cheapest charcoal. I'm struggling so hard right now just to keep my financial head above water, so of course I bought the cheapest brand. Between the rising cost of gas and food and the growing list of food allergies I can't just eating anything anymore. I can't buy the cheapest anything anymore because invariablly whatever it is, be it shampoo or charcoal, it will have wheat or barley or oats in it.
Then there's the question of whether or not the BBQ is now too contaminated to continue to use. I cleaned it out good this last weekend and grilled again. It made me sick again. I guess the answer is yes, it's too contaminated to continue to use. So if I ever want to grill again I'm going to have to get a brand new gas grill. Yeah. I tried pricing those. Nothing under $120. Where the hell am I gonna get $120? Guess I'm not grilling for awhile. Gee thanks. Can't go to a restaurant or order take out, now I can't grill. Guess I'm damned lucky there's still anything I can eat.
I can't afford this stupid Disease anymore!!!I am just so tired of this. I'm tired of paying more for things. I'm tired of not being able to eat in restaurants or ordering take out or delivery. I'm tired of being accidentally glutened. I'm tired of calling and emailing before I can buy or eat something because some stupid manufacturer doesn't have the good graces to spell out what "Natural Flavorings" means. I just want to be normal. I want to do what normal people do. I want to eat pizza and hamburgers like a normal human being.
But I've finally learned one important lesson. Always keep Haagen Dazs ice cream in the house. Again, yeah I'd buy a cheaper brand but they put some bizzare shit in ice cream, including of course barley and wheat. Haagan Daza, bless them has total of five normal safe ingredients listed on their ice cream. No additives, no preservatives, just cream milk coccoa sugar and eggs. If only I could live on Haagen Dazs chocolate ice cream and ruffles potato chips I'd be set. At the very least Haagen Dazs ice cream is comforting. I'll settle for that right now this minute.
Monday, June 11, 2007
Friday, May 25, 2007
Shelter
I've never been fond or romantic poetry and love songs. The whole idea of another person as the center of my universe doesn't appeal to me these days, and it's never had a big appeal. I guess because no one in my life has ever lived up to those idealized verses and prose. I've never found shelter in another person. It was never for lack of looking or wanting. Many many is the time, even now, when having just one person in my life to provide respite from the frustration and interminably hard work of being alone would have been so welcome.
The closest I guess I've ever come was my father, and my father's house. He was a good man. That's the highest praise I think I can offer him. He was a man who in ever instance I ever saw made the decent kind choice. He was also the one person who I knew would always believe in me. How he managed to instill that sense of unfailing belief I do not know, but I knew no matter what I did he would always support my choices. Being a man and from the old school there weren't many affectionate gestures, but I grew up with this rock in my life. He grew to become the voice in my head. It's his point of view, his visions, his decency that the little voice in my head speaks with. 17 years after his death it's still his voice.
Then there is my father's house. He and my mother bought it at a time and place where owning your own home was a new American glory. That was in the fifties, the post WWII optimism as work. The new dream, the new America. He was proud of that accomplishment. I lived in that house for almost two thirds of my life. I rode out two major earthquakes in that house, and a few dozen minor ones, not to mention death and fear and rage and sorrow. And it sheltered me and kept me safe. Live in one place for so long and it becomes a part of who you are. There are no other childhood memories of home and shelter but that house. It's such a gigantic part of my life. And buying it was one of my father's prouder achievements.
It's a long story, but I've heard that house calling out to me for years, wanting to be saved. I can't explain that, but that's how it's felt. And I've been frustrated by recalcitrant irrational family nonsense every inch of the way in an effort to save it. But now I wonder what it is I'm saving? And what will be left of the only real shelter I've ever known once all the dust settles. The house had a new roof put on twelve years ago. Unfortunately it was put on by idiots with no permanent business address. It leaked virtually from day one. For family reasons that I really don't have the energy or will to explain, while the house belonged to my father's trust I had no say in it's disposition. This time last year I took legal steps to change that. After abandoning the idea that any of my siblings would be helpful, a bizarre belief I've harbored most of my life, I hired a lawyer, borrowed the money and wrestled control of the house from the trustee. I wanted to save it. I wanted to give it whatever it needed and let it go on and house another family and give shelter to another child, and that was the best way to honor my memories.
I found out last night that there is very little left that can be saved. The roof, including beams and even some ceiling joists will have to come completely off. Twelve years of water damage has rotted the beams. The roof, the shelter will be gone, completely gone, the core of the house open to the sky, exposed. The kitchen and bathroom sub floors are rotted. They need to go. The kitchen and bathrooms have to be gutted. Most of the landscaping my father and mother and I planted has gone wild and will simply be stripped away and replaced with green sod. Even the stucco on the outside cannot be saved. It will have to be re stuccoed or sided. In trying to save it we will be creating something unrecognizable.
All I could do last night was walk around and around my own small home and cry and say "I'm sorry" over and over. I know I did all I could. I know there was never anything more I could have done that would have saved the poor house from being stripped to it's studs. I did everything, said everything I could think to in the last ten years and it all fell on deaf ears. But still I feel this overwhelming sense of having let my father down. It's irrational, but somehow, over the decades a house made of wood and stucco and glass becomes more than just a building. It becomes the personification of a life's goals, or many lives goals. It becomes a living creature that you can't simply cut out of your life.
The closest I guess I've ever come was my father, and my father's house. He was a good man. That's the highest praise I think I can offer him. He was a man who in ever instance I ever saw made the decent kind choice. He was also the one person who I knew would always believe in me. How he managed to instill that sense of unfailing belief I do not know, but I knew no matter what I did he would always support my choices. Being a man and from the old school there weren't many affectionate gestures, but I grew up with this rock in my life. He grew to become the voice in my head. It's his point of view, his visions, his decency that the little voice in my head speaks with. 17 years after his death it's still his voice.
Then there is my father's house. He and my mother bought it at a time and place where owning your own home was a new American glory. That was in the fifties, the post WWII optimism as work. The new dream, the new America. He was proud of that accomplishment. I lived in that house for almost two thirds of my life. I rode out two major earthquakes in that house, and a few dozen minor ones, not to mention death and fear and rage and sorrow. And it sheltered me and kept me safe. Live in one place for so long and it becomes a part of who you are. There are no other childhood memories of home and shelter but that house. It's such a gigantic part of my life. And buying it was one of my father's prouder achievements.
It's a long story, but I've heard that house calling out to me for years, wanting to be saved. I can't explain that, but that's how it's felt. And I've been frustrated by recalcitrant irrational family nonsense every inch of the way in an effort to save it. But now I wonder what it is I'm saving? And what will be left of the only real shelter I've ever known once all the dust settles. The house had a new roof put on twelve years ago. Unfortunately it was put on by idiots with no permanent business address. It leaked virtually from day one. For family reasons that I really don't have the energy or will to explain, while the house belonged to my father's trust I had no say in it's disposition. This time last year I took legal steps to change that. After abandoning the idea that any of my siblings would be helpful, a bizarre belief I've harbored most of my life, I hired a lawyer, borrowed the money and wrestled control of the house from the trustee. I wanted to save it. I wanted to give it whatever it needed and let it go on and house another family and give shelter to another child, and that was the best way to honor my memories.
I found out last night that there is very little left that can be saved. The roof, including beams and even some ceiling joists will have to come completely off. Twelve years of water damage has rotted the beams. The roof, the shelter will be gone, completely gone, the core of the house open to the sky, exposed. The kitchen and bathroom sub floors are rotted. They need to go. The kitchen and bathrooms have to be gutted. Most of the landscaping my father and mother and I planted has gone wild and will simply be stripped away and replaced with green sod. Even the stucco on the outside cannot be saved. It will have to be re stuccoed or sided. In trying to save it we will be creating something unrecognizable.
All I could do last night was walk around and around my own small home and cry and say "I'm sorry" over and over. I know I did all I could. I know there was never anything more I could have done that would have saved the poor house from being stripped to it's studs. I did everything, said everything I could think to in the last ten years and it all fell on deaf ears. But still I feel this overwhelming sense of having let my father down. It's irrational, but somehow, over the decades a house made of wood and stucco and glass becomes more than just a building. It becomes the personification of a life's goals, or many lives goals. It becomes a living creature that you can't simply cut out of your life.
Friday, April 6, 2007
On Finding Balance
I've been unconsciously and consciously seeking balance for the last ten years of my life. To say I do not come from a long line of balanced individuals would be a gross understatement of history in every possible way, LOL. So I started out at a disadvantage.
I used to work in the non-profit world where they frown on balance. They want you obsessed by the cause, devoting all your waking hours to it. They want to fix all the ills of the world and they truly believe you can do it with money alone. Well, and the slave labor of grossly underpaid brilliant college educated women. And that was what began to wake me up. I came to realize I was spending all my time and energy "out there" trying to fix the world that I had begun to suspect didn't really want to be fixed. It was some version of saving the world I guess, and I truly thought it was the most noble of professions. Then someone introduced me to a revolutionary concept: The most profound radical change you can make in the world is to change yourself. And I have been relearning that one simple idea over and over again, with deeper and newer meaning for the last ten years. I cannot change other people. People change when they are ready to change. I can change me.
I was working for a Non profit Women's Foundation in Los Angeles in the fundraising department about ten years ago when Celiac Disease first reared it's head. I had no idea what was wrong with me, only that I had this terrible sickening nausea most of the time and had hideous bouts of joint pain that even massive doses of Advil could not touch. Several doctors shrugged their shoulders after running batteries of tests. This was not, and still unfortunately is not an uncommon response by doctors. That it took ten years to get a diagnosis is also not unusual. I read somewhere that 9 years is the average now.
Still, I read between the doctors frowns and concluded, as they had, that it must all be in my head; a product of a stress filled purposeful modern dedicated life. So I went off seeking stress management training so that I could "handle" what was a pretty hideous, stress filled, difficult, unappreciated job. I went to a hypnotherapist named Michael Benner. I had listened to Michael for years on KLOS and other stations in L.A.. I signed up for his stress management course and inadvertently jump started a search for balance and peace and personal growth that continues to this day.
You could ask I suppose, which did I truly need at that point; stress management or a gluten free diet? It's irrelevant what I needed then. I realize that profoundly and deeply. What was, does not matter. All that matters is what I learned from it that brought me to here and now. Had I never met Michael I would not be where I am. He was as much a catalyst as a teacher; a spring board into a world of concepts and ideas I'd only danced around at that point. He was the one who planted the idea in my head that changing and growing me was the most radical peaceful relevant thing I could do with my life.
Still it took me another four years and yet another even more stress filled non profit job for me to finally go in search of balance. When I did, we're talking leap off into the deep end of the pool search. I do nothing the easy way. Many is the time I've wished I could. Why dip your toe in when you can plunge into the deep end without a life jacket? It's quicker and saves a lot of deliberating along the way I guess, but damn it can be cold and frightening.
I began to find myself up here in the mountains, my true self. It was a difficult search though, complicated by the symptoms of Celiac Disease; most notably depression and rage and varying degrees of physical discomfort. Which brings me to this moment. This diagnosis. The need to understand why and how and what it was all for. All the symptoms I've experienced over that last ten years were a result of Celiac Disease. But what "caused" the Celiac? No one knows what turns on the Celiac genes. Many more people have the genes than will be diagnosed with or suffer from Celiacs. Something like 80% of the population has genes for either Celiac or simple Gluten Intolerance. What turns those genes on in some and not in others?
In my case I now understand. It was stress. It was stress all along, at each point where the Celiac symptoms got worse it corresponded to the stress levels in my life. It was stress from the very start. Celiac is just an expression of that stress. An expression I will have to live with for the rest of my life. Talk about an overkill lesson. But again, I do nothing the easy way so who is surprised? So, here's the funny part, I'm back at it, trying to actively manage the stress in my life. I know now that I have to take it a lot further than I already have or I will in all likelihood suffer even more as a result of Celiac Disease.
Celiac Disease tends to cause allergies for those who have it. In simple terms it does that by altering the walls of the small intestine so that larger particles than normal pass through the intestine into the blood and into the abdominal cavity. The body sees these "abnormal" size particles and attacks them because they are out of place. In the process the body memorizes the particle make up and responds with the same immune reaction the next time they encounter a similar particle anywhere in the body. In simple terms, that is what allergies are; the body remembering. Because of the intestinal damage it is believed Celiacs are prone to multiple significant allergies. I was determined when I was diagnosed that I would not be one of those people. Yeah. Well. No. By the time I had decided that I already was.
Once I got all the gluten out of my body I could tell that there was still something wrong. So I went through several elimination diets. I know now that I am allergic to corn and vegetables/fruits in the nightshade family. So life without bread was bad huh? Try life without mashed potatoes or french fries. And corn is in everything, as I found out last night. I mean come on, how many people know that there's cornstarch in powdered sugar? I know it now.
That new knowledge sent me into a tail spin. I'd barely adjusted to being gluten free when I faced the task of cutting corn and nightshades out of my diet as well. Here's a good one. I'd started making bunless hamburgers. That's cool. Most of the taste is in the meat and condiments anyway. Okay, now try a bunless hamburger WITHOUT ketchup. I'm sure somewhere out there is someone who prefers it that way. They're just not me. So I was insufferable for about two weeks after finding out about corn and nightshades. And I am afraid. I live in fear of what might be next. Will there be something else? Will there be anything left to eat?
That is why I started to ask myself what all of THIS is about? And the answer once I asked and shut up long enough to listen was stress. This need to control the uncontrollable. Which led me to the concept of peace and the idea that it all must begin with me. I can change nothing. I can only change myself. I cannot change what is, I can only change how I react to it. I am trying to unlearn forty something years of learning and reacting. I'm trying to find the most peaceful way to get through each day. I want to live. That is it. I want to live, and Celiacs have a whole host of illnesses waiting for them out there. The only way I know of to short circuit all of that is to learn to relax and respond with peace. I'm convinced, that and diet are all that stand between me and being six feet under.
I was sitting watching the snow fall, in April of all things, yesterday when it struck me how far I have come from ten years ago to now. But it has all of it, that parts that are worth talking about, been an inward journey. I'm not richer or thinner or prettier. Everything I've gained holds worth only to me. It also struck me that I'm somehow on a fast track here. As if I need to cram more into this life than the average person. That is the way it feels. Or I could just still be feeling sorry for myself. Gods I miss salsa and ketchup and BBQ sauce and . . . I could go . . . As I wrote once before, someone better have a damned good explanation for all this in Summerland. If this is just some twisted joke of the Gods I am not amused.
I used to work in the non-profit world where they frown on balance. They want you obsessed by the cause, devoting all your waking hours to it. They want to fix all the ills of the world and they truly believe you can do it with money alone. Well, and the slave labor of grossly underpaid brilliant college educated women. And that was what began to wake me up. I came to realize I was spending all my time and energy "out there" trying to fix the world that I had begun to suspect didn't really want to be fixed. It was some version of saving the world I guess, and I truly thought it was the most noble of professions. Then someone introduced me to a revolutionary concept: The most profound radical change you can make in the world is to change yourself. And I have been relearning that one simple idea over and over again, with deeper and newer meaning for the last ten years. I cannot change other people. People change when they are ready to change. I can change me.
I was working for a Non profit Women's Foundation in Los Angeles in the fundraising department about ten years ago when Celiac Disease first reared it's head. I had no idea what was wrong with me, only that I had this terrible sickening nausea most of the time and had hideous bouts of joint pain that even massive doses of Advil could not touch. Several doctors shrugged their shoulders after running batteries of tests. This was not, and still unfortunately is not an uncommon response by doctors. That it took ten years to get a diagnosis is also not unusual. I read somewhere that 9 years is the average now.
Still, I read between the doctors frowns and concluded, as they had, that it must all be in my head; a product of a stress filled purposeful modern dedicated life. So I went off seeking stress management training so that I could "handle" what was a pretty hideous, stress filled, difficult, unappreciated job. I went to a hypnotherapist named Michael Benner. I had listened to Michael for years on KLOS and other stations in L.A.. I signed up for his stress management course and inadvertently jump started a search for balance and peace and personal growth that continues to this day.
You could ask I suppose, which did I truly need at that point; stress management or a gluten free diet? It's irrelevant what I needed then. I realize that profoundly and deeply. What was, does not matter. All that matters is what I learned from it that brought me to here and now. Had I never met Michael I would not be where I am. He was as much a catalyst as a teacher; a spring board into a world of concepts and ideas I'd only danced around at that point. He was the one who planted the idea in my head that changing and growing me was the most radical peaceful relevant thing I could do with my life.
Still it took me another four years and yet another even more stress filled non profit job for me to finally go in search of balance. When I did, we're talking leap off into the deep end of the pool search. I do nothing the easy way. Many is the time I've wished I could. Why dip your toe in when you can plunge into the deep end without a life jacket? It's quicker and saves a lot of deliberating along the way I guess, but damn it can be cold and frightening.
I began to find myself up here in the mountains, my true self. It was a difficult search though, complicated by the symptoms of Celiac Disease; most notably depression and rage and varying degrees of physical discomfort. Which brings me to this moment. This diagnosis. The need to understand why and how and what it was all for. All the symptoms I've experienced over that last ten years were a result of Celiac Disease. But what "caused" the Celiac? No one knows what turns on the Celiac genes. Many more people have the genes than will be diagnosed with or suffer from Celiacs. Something like 80% of the population has genes for either Celiac or simple Gluten Intolerance. What turns those genes on in some and not in others?
In my case I now understand. It was stress. It was stress all along, at each point where the Celiac symptoms got worse it corresponded to the stress levels in my life. It was stress from the very start. Celiac is just an expression of that stress. An expression I will have to live with for the rest of my life. Talk about an overkill lesson. But again, I do nothing the easy way so who is surprised? So, here's the funny part, I'm back at it, trying to actively manage the stress in my life. I know now that I have to take it a lot further than I already have or I will in all likelihood suffer even more as a result of Celiac Disease.
Celiac Disease tends to cause allergies for those who have it. In simple terms it does that by altering the walls of the small intestine so that larger particles than normal pass through the intestine into the blood and into the abdominal cavity. The body sees these "abnormal" size particles and attacks them because they are out of place. In the process the body memorizes the particle make up and responds with the same immune reaction the next time they encounter a similar particle anywhere in the body. In simple terms, that is what allergies are; the body remembering. Because of the intestinal damage it is believed Celiacs are prone to multiple significant allergies. I was determined when I was diagnosed that I would not be one of those people. Yeah. Well. No. By the time I had decided that I already was.
Once I got all the gluten out of my body I could tell that there was still something wrong. So I went through several elimination diets. I know now that I am allergic to corn and vegetables/fruits in the nightshade family. So life without bread was bad huh? Try life without mashed potatoes or french fries. And corn is in everything, as I found out last night. I mean come on, how many people know that there's cornstarch in powdered sugar? I know it now.
That new knowledge sent me into a tail spin. I'd barely adjusted to being gluten free when I faced the task of cutting corn and nightshades out of my diet as well. Here's a good one. I'd started making bunless hamburgers. That's cool. Most of the taste is in the meat and condiments anyway. Okay, now try a bunless hamburger WITHOUT ketchup. I'm sure somewhere out there is someone who prefers it that way. They're just not me. So I was insufferable for about two weeks after finding out about corn and nightshades. And I am afraid. I live in fear of what might be next. Will there be something else? Will there be anything left to eat?
That is why I started to ask myself what all of THIS is about? And the answer once I asked and shut up long enough to listen was stress. This need to control the uncontrollable. Which led me to the concept of peace and the idea that it all must begin with me. I can change nothing. I can only change myself. I cannot change what is, I can only change how I react to it. I am trying to unlearn forty something years of learning and reacting. I'm trying to find the most peaceful way to get through each day. I want to live. That is it. I want to live, and Celiacs have a whole host of illnesses waiting for them out there. The only way I know of to short circuit all of that is to learn to relax and respond with peace. I'm convinced, that and diet are all that stand between me and being six feet under.
I was sitting watching the snow fall, in April of all things, yesterday when it struck me how far I have come from ten years ago to now. But it has all of it, that parts that are worth talking about, been an inward journey. I'm not richer or thinner or prettier. Everything I've gained holds worth only to me. It also struck me that I'm somehow on a fast track here. As if I need to cram more into this life than the average person. That is the way it feels. Or I could just still be feeling sorry for myself. Gods I miss salsa and ketchup and BBQ sauce and . . . I could go . . . As I wrote once before, someone better have a damned good explanation for all this in Summerland. If this is just some twisted joke of the Gods I am not amused.
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