Esoteric:
"It's all good." Speculative origins and basically unknown author.
Exoteric:
"Its all good........except for the bad parts and those are horrid." Robynn Reilly - speculative intelligence and basically unknown author.
Copyright 2008
Tuesday, December 16, 2008
Sunday, December 14, 2008
"Crabby Holidays to You....!"
"O Crabby night, the stars are brightly shining......."
Anyone else feeling a little less than “Jingle-Belly” about the whole Christmas, jam-packed schedule? I don't mean to be grumpy and grouchy. It's just that I'm so good at it I hate to let all that practice go to waste.
Just yesterday, Jamie and I were driving along on our way to his company Christmas party. It really was a worthwhile event this year. They decided to dispense with the over-the-top dressy affair and keep it very low key, using the money they would have spent and blessing six needy families instead. We all brought grocery items and had a great lunch. But that didn't stop us from grousing the whole way there about just another thing to do and how many other "just another thing-s" we had to complete. We were so ridiculous Jamie finally looked at me and said, "What else can we gripe about now?!" "Have yourself a crabby little Christmas........"
The time pressures can bring out the worst, I guess. It put me in mind of a Christmas season long past. Hannah was about four and wanting to be in the middle of every single thing I did in the kitchen. That was fun for the first 32 hours of the day. But now it was 10pm and I was down to piecrust I was trying out, for the first time, in the food processor. Martha Stewart (that self-righteous irritant) made it look so simple the day before on her show. My first crust stuck to the top and was fit for gluing wood flooring to the concrete. The next resembled birdseed and stuck together like Sahara sand. I blew that out and started over, again. In the meantime, Hannah stood beside me saying things like, "Can I do it? What's wrong with it? Can I do it? Why is it wet? Can I do it? Why is it dry? Can I do it? What's wrong, Mommy? Can I do it? Why are you making that face, Mommy? Can I do it?"
I felt my inner Grinch flexing his muscles as I told her, "Hannah! Mommy REALLY needs to do this alone. You need to leave the kitchen now and just let me do this myself!" She reluctantly left muttering, "Well, I don't know why I can't do it." The next thing I heard was a phone conversation from the stairs. There she sat in the middle of the staircase with her Fisher-Price phone plopped in her lap and the receiver pressed to her ear. "9-9-1? 9-9-1?" she asked the phantom operator who couldn't have cared less that she had misdialed. "You need to come and get my mommy cause she's not right!" Boy howdy.
The year before, when she was three, we had guests staying during Thanksgiving. Hannah was up early and yakking away. I told her more than once to be quiet since people were still sleeping. Finally I cornered her in the hallway, stared at her eyeball-to-eyeball and firmly told her she HAD to keep it down. She looked back at me just as determinedly, pointed her finger at me and replied, "You better keep YOUR crabby voice quiet, too!" Checkmate.
So, what the heck's the matter with me this year? Deferred preparations might be part of it. There hasn't been any time to break ground on Christmas around here. December 13th and no sign of the Christmas season at our house. I'm trying to knock everyone and everything out of the way so I can start celebrating joyfully. Reminds me of Sunday mornings when we're running late. The standing joke in our house is to yell at every pokey-joe motorist, "GET OUT OF THE WAY, DANG IT! WE'RE TRYING TO GET TO CHURCH AND WORSHIP THE LORD!!" Beware oxymorons driving down the road. We might run over you, too.
The weird thing is, I have actually loved every single event we've attended this Christmas season. That hasn't been the problem. It's those spaces between the events where I get into trouble. The ones where I actually have to be grateful for four hours of sleep and haul it up anyway; the health issues I can't control; the moments in the kitchen believing wholeheartedly that counters are only a theory (as I haven’t seen them in days) and something else must be holding up this assemblage of dishes and debris; the effort expended trying to decide if Sir Edmund Hillary could have scaled a mountain the size of my laundry pile.
But now, just one day later, there are days like today. I spend time with my love-em-to-pieces teens in my Sunday school class....my pastor/dear friend gently exhorts us from the pulpit.....my perspective shifts. I begin to count my blessings and realize I managed to buy a Christmas tree in three minutes flat last night. No lie. Hannah decorated the mantle and got the decorations out yesterday in my absence. Jamie put the lights on the house. Hunter played a shepherd in a Christmas production and, with the fake penciled-in beard and headdress that looked more like a 40's fedora, managed to emulate a mafia gangster shepherding his sheep and made me nearly drop the camera laughing.
I was also overcome with the blessings of incredible friends we're surrounded by so much of the time, but especially in the last 72 hours of event-laden days and evenings. We've all been running in the same circles but many of us are facing rough challenges: A very needed liver transplant and declining health, offering to donate part of a liver to meet the need and all that entails, sending a precious son to be deployed as a new Marine, waiting on God as a beloved husband and father battles ALS, overcoming cancer and life changes, financial shockers and job loss.....the list goes on. Sometimes I just need God's Holy 2x4 to the forehead to get some perspective.
It has arrived, I’m happy to report, and with it, joy. Joy in realizing how rich we (my family, my friends, and I) are in all the things money can’t buy, how blessed we are by God's gift to us and by those who love us, and how, if you climb to the very top of my laundry pile and lean left, you can see the snow covered Sierras out the top of the bathroom window.
Copyright 2008
Anyone else feeling a little less than “Jingle-Belly” about the whole Christmas, jam-packed schedule? I don't mean to be grumpy and grouchy. It's just that I'm so good at it I hate to let all that practice go to waste.
Just yesterday, Jamie and I were driving along on our way to his company Christmas party. It really was a worthwhile event this year. They decided to dispense with the over-the-top dressy affair and keep it very low key, using the money they would have spent and blessing six needy families instead. We all brought grocery items and had a great lunch. But that didn't stop us from grousing the whole way there about just another thing to do and how many other "just another thing-s" we had to complete. We were so ridiculous Jamie finally looked at me and said, "What else can we gripe about now?!" "Have yourself a crabby little Christmas........"
The time pressures can bring out the worst, I guess. It put me in mind of a Christmas season long past. Hannah was about four and wanting to be in the middle of every single thing I did in the kitchen. That was fun for the first 32 hours of the day. But now it was 10pm and I was down to piecrust I was trying out, for the first time, in the food processor. Martha Stewart (that self-righteous irritant) made it look so simple the day before on her show. My first crust stuck to the top and was fit for gluing wood flooring to the concrete. The next resembled birdseed and stuck together like Sahara sand. I blew that out and started over, again. In the meantime, Hannah stood beside me saying things like, "Can I do it? What's wrong with it? Can I do it? Why is it wet? Can I do it? Why is it dry? Can I do it? What's wrong, Mommy? Can I do it? Why are you making that face, Mommy? Can I do it?"
I felt my inner Grinch flexing his muscles as I told her, "Hannah! Mommy REALLY needs to do this alone. You need to leave the kitchen now and just let me do this myself!" She reluctantly left muttering, "Well, I don't know why I can't do it." The next thing I heard was a phone conversation from the stairs. There she sat in the middle of the staircase with her Fisher-Price phone plopped in her lap and the receiver pressed to her ear. "9-9-1? 9-9-1?" she asked the phantom operator who couldn't have cared less that she had misdialed. "You need to come and get my mommy cause she's not right!" Boy howdy.
The year before, when she was three, we had guests staying during Thanksgiving. Hannah was up early and yakking away. I told her more than once to be quiet since people were still sleeping. Finally I cornered her in the hallway, stared at her eyeball-to-eyeball and firmly told her she HAD to keep it down. She looked back at me just as determinedly, pointed her finger at me and replied, "You better keep YOUR crabby voice quiet, too!" Checkmate.
So, what the heck's the matter with me this year? Deferred preparations might be part of it. There hasn't been any time to break ground on Christmas around here. December 13th and no sign of the Christmas season at our house. I'm trying to knock everyone and everything out of the way so I can start celebrating joyfully. Reminds me of Sunday mornings when we're running late. The standing joke in our house is to yell at every pokey-joe motorist, "GET OUT OF THE WAY, DANG IT! WE'RE TRYING TO GET TO CHURCH AND WORSHIP THE LORD!!" Beware oxymorons driving down the road. We might run over you, too.
The weird thing is, I have actually loved every single event we've attended this Christmas season. That hasn't been the problem. It's those spaces between the events where I get into trouble. The ones where I actually have to be grateful for four hours of sleep and haul it up anyway; the health issues I can't control; the moments in the kitchen believing wholeheartedly that counters are only a theory (as I haven’t seen them in days) and something else must be holding up this assemblage of dishes and debris; the effort expended trying to decide if Sir Edmund Hillary could have scaled a mountain the size of my laundry pile.
But now, just one day later, there are days like today. I spend time with my love-em-to-pieces teens in my Sunday school class....my pastor/dear friend gently exhorts us from the pulpit.....my perspective shifts. I begin to count my blessings and realize I managed to buy a Christmas tree in three minutes flat last night. No lie. Hannah decorated the mantle and got the decorations out yesterday in my absence. Jamie put the lights on the house. Hunter played a shepherd in a Christmas production and, with the fake penciled-in beard and headdress that looked more like a 40's fedora, managed to emulate a mafia gangster shepherding his sheep and made me nearly drop the camera laughing.
I was also overcome with the blessings of incredible friends we're surrounded by so much of the time, but especially in the last 72 hours of event-laden days and evenings. We've all been running in the same circles but many of us are facing rough challenges: A very needed liver transplant and declining health, offering to donate part of a liver to meet the need and all that entails, sending a precious son to be deployed as a new Marine, waiting on God as a beloved husband and father battles ALS, overcoming cancer and life changes, financial shockers and job loss.....the list goes on. Sometimes I just need God's Holy 2x4 to the forehead to get some perspective.
It has arrived, I’m happy to report, and with it, joy. Joy in realizing how rich we (my family, my friends, and I) are in all the things money can’t buy, how blessed we are by God's gift to us and by those who love us, and how, if you climb to the very top of my laundry pile and lean left, you can see the snow covered Sierras out the top of the bathroom window.
Copyright 2008
Thursday, December 11, 2008
Observational Twitter 2
Esoteric:
"That which does not kill us makes us stronger." Friedrich Nietzsche
Exoteric:
"That which does not kill us leaves us maimed, bleeding, and disabled." Robynn Reilly
Copyright 2008
"That which does not kill us makes us stronger." Friedrich Nietzsche
Exoteric:
"That which does not kill us leaves us maimed, bleeding, and disabled." Robynn Reilly
Copyright 2008
Tuesday, December 9, 2008
Doughnuts and Fools
A doughnut sang me a song this morning. It had a lovely voice.
Actually, I'm not sure if it was the doughnut or the sugar, or both, but it was effective and soon we had a trio going. I always end up singing lead in these little productions but I'll hum the tune all alone when I step on the scale tomorrow. I'd like to say I just don't know how this happened but I have EVERY idea how it happened.
Sugar signed on as my paramour very early on and I encouraged all courting. We'd break up occasionally but this marriage of passion caused us to work things out quickly. I did get wiser as time went on and finally asked for a divorce. But it seems we're very modern and it has remained way too friendly between us. Bitterness would have been better.
I started out with hope. I was a proud, defiant, skinny-little-anorexic-anemic when I was four. I ruled over food and threatened to pummel it if it got near my mouth. I endured needle jabs to check iron levels, ominous threats, and enemy attacks in the form of spankings in the food wars, but I remained steadfast until one day: I discovered candy at the corner liquor store. Ah, Dominic's Liquor. The siren's call to the local drunks and willing children with left-over coins from our mothers' cast off purses.
It was down the block and across Blackstone Avenue. We navigated the streets regularly, my sister and I, along with the other neighborhood addicts. In the summer our bare feet would be dyed with road grime and we'd choose the painted white lines of the crosswalk to avoid third degree burns from the fry-an-egg asphalt. My heart would flutter a little when Dominic's would loom into view with its welcoming double-doors thrown open wide. What could compete with the cool, loamy smelling, darkened interior of booze and Sugar Babies? The Jim Beam decorator bottles of cars and horses and ladies in skirts were almost as enticing as the row of Necco's wafers, candy cigarettes, tiny wax soda bottles full of dyed sugar water, and little chocolate babies you could chew up. But sleeves of Sixlets and our day-long attractions, Big Hunks, were calling and we rushed to answer.
My best friend of this era was Jackie Doke. For the first six years of my life we lived directly across the street from each other. She was also brazen in her search for the sugar high. She was allowed to walk to the ice-cream store alone. One day she came strolling down the street with two dripping cones, one in each hand. What did she need two cones for? I tried to wheedle one out of her. She must have been anticipating this attack and planning her move. She'd give me one, she said, for a price. Go find something I knew she wanted and the ice-cream was mine. I rushed through my front door and dashed around my room quickly weighing my options. Not the white stuffed cat with the blue glass eyes....my now estranged father had given that to me......hmmm, it would have to be the three-foot-tall walking doll. Yes, that was it. We struck a deal, I ate the ice-cream, and the doll was gone. Jackie's mother, Juanita, called a short time later to return my plastic pseudo-child but my mother was resolute: a deal's a deal. It wasn't my birthright, as with Esau and Jacob, but I did regret it for a long time after my sugar stupor wore off. Jackie and ice-cream will be forever etched in my memory with a near DNA link.
I sometimes wonder, as I look back, if I loved certain people for who they were or for the treats they offered. The two were often inextricable. My paternal grandmother, Nana, always kept a huge bowl of M&M's on her table. The estranged father's future mother-in-law (I KNOW), Ola May, would buy me sweet bananas, which I craved as though I were King Kong. I hope I at least said hello to both of these old ladies as I eyed the objects of my gustatory heaven.
But doughnuts, oh my, they came looking for ME. By the time I was eight we were living in the Projects; that run down part of town relegated to the down-on-your-luck, prostitutes, and drug users. I fit right in. For a nickel I could savor my way into another world. The "Doughnut Man" drove a slow moving truck that steamily idled its way through the neighborhood on cold, foggy mornings. When he spied you he would stop, open the big doors on the back, and slide out steaming trays of fresh, glazed doughnuts. The taste would never be equaled in all my future doughnut exploits and the intoxicating fragrance drifting off those trays will linger forever. I was always and only a nickel away from euphoria.
So, maybe it was all of those things coming back to me this morning as I left a 7am appointment feeling entitled to some sort of reward for due diligence and grown-up responsibility. I knew those were the thoughts of a fool but fools do fool themselves and listen to siren songs. And shouldn't you keep your friends close and your enemies closer? I wonder if a lifetime on your gut is close enough.
Copyright 12/2008
Actually, I'm not sure if it was the doughnut or the sugar, or both, but it was effective and soon we had a trio going. I always end up singing lead in these little productions but I'll hum the tune all alone when I step on the scale tomorrow. I'd like to say I just don't know how this happened but I have EVERY idea how it happened.
Sugar signed on as my paramour very early on and I encouraged all courting. We'd break up occasionally but this marriage of passion caused us to work things out quickly. I did get wiser as time went on and finally asked for a divorce. But it seems we're very modern and it has remained way too friendly between us. Bitterness would have been better.
I started out with hope. I was a proud, defiant, skinny-little-anorexic-anemic when I was four. I ruled over food and threatened to pummel it if it got near my mouth. I endured needle jabs to check iron levels, ominous threats, and enemy attacks in the form of spankings in the food wars, but I remained steadfast until one day: I discovered candy at the corner liquor store. Ah, Dominic's Liquor. The siren's call to the local drunks and willing children with left-over coins from our mothers' cast off purses.
It was down the block and across Blackstone Avenue. We navigated the streets regularly, my sister and I, along with the other neighborhood addicts. In the summer our bare feet would be dyed with road grime and we'd choose the painted white lines of the crosswalk to avoid third degree burns from the fry-an-egg asphalt. My heart would flutter a little when Dominic's would loom into view with its welcoming double-doors thrown open wide. What could compete with the cool, loamy smelling, darkened interior of booze and Sugar Babies? The Jim Beam decorator bottles of cars and horses and ladies in skirts were almost as enticing as the row of Necco's wafers, candy cigarettes, tiny wax soda bottles full of dyed sugar water, and little chocolate babies you could chew up. But sleeves of Sixlets and our day-long attractions, Big Hunks, were calling and we rushed to answer.
My best friend of this era was Jackie Doke. For the first six years of my life we lived directly across the street from each other. She was also brazen in her search for the sugar high. She was allowed to walk to the ice-cream store alone. One day she came strolling down the street with two dripping cones, one in each hand. What did she need two cones for? I tried to wheedle one out of her. She must have been anticipating this attack and planning her move. She'd give me one, she said, for a price. Go find something I knew she wanted and the ice-cream was mine. I rushed through my front door and dashed around my room quickly weighing my options. Not the white stuffed cat with the blue glass eyes....my now estranged father had given that to me......hmmm, it would have to be the three-foot-tall walking doll. Yes, that was it. We struck a deal, I ate the ice-cream, and the doll was gone. Jackie's mother, Juanita, called a short time later to return my plastic pseudo-child but my mother was resolute: a deal's a deal. It wasn't my birthright, as with Esau and Jacob, but I did regret it for a long time after my sugar stupor wore off. Jackie and ice-cream will be forever etched in my memory with a near DNA link.
I sometimes wonder, as I look back, if I loved certain people for who they were or for the treats they offered. The two were often inextricable. My paternal grandmother, Nana, always kept a huge bowl of M&M's on her table. The estranged father's future mother-in-law (I KNOW), Ola May, would buy me sweet bananas, which I craved as though I were King Kong. I hope I at least said hello to both of these old ladies as I eyed the objects of my gustatory heaven.
But doughnuts, oh my, they came looking for ME. By the time I was eight we were living in the Projects; that run down part of town relegated to the down-on-your-luck, prostitutes, and drug users. I fit right in. For a nickel I could savor my way into another world. The "Doughnut Man" drove a slow moving truck that steamily idled its way through the neighborhood on cold, foggy mornings. When he spied you he would stop, open the big doors on the back, and slide out steaming trays of fresh, glazed doughnuts. The taste would never be equaled in all my future doughnut exploits and the intoxicating fragrance drifting off those trays will linger forever. I was always and only a nickel away from euphoria.
So, maybe it was all of those things coming back to me this morning as I left a 7am appointment feeling entitled to some sort of reward for due diligence and grown-up responsibility. I knew those were the thoughts of a fool but fools do fool themselves and listen to siren songs. And shouldn't you keep your friends close and your enemies closer? I wonder if a lifetime on your gut is close enough.
Copyright 12/2008
Sunday, December 7, 2008
Observational Twitter 1
Esoteric:
"Anything worth doing always starts with being scared." Art Garfunkel
Exoteric:
"Also a bunch of rot that isn't worth doing." Robynn Reilly
Copyright 12/2008
"Anything worth doing always starts with being scared." Art Garfunkel
Exoteric:
"Also a bunch of rot that isn't worth doing." Robynn Reilly
Copyright 12/2008
Thursday, December 4, 2008
Sickness and Other Things That Make You Popular
Grab your tea or coffee and pretend you've just decided to do your good deed for the day by visiting your Great Aunt Ethel. That's the excitement level you can expect if you decide to read this post. If not, no hard feelings. I secretly admire your lack of reticence in blowing me off.
For the rest of you compassionate souls who've decided to stick around, here's the lowdown on the latest installment of, "As The Stomach Turns."
You may know I have battled "The Mysterious Malady" for about ten years. It started with my feet and legs going to sleep as I sat teaching the kids one day. Unlike the rest of me, they decided to never wake up again. Think the pins and needles after you've fallen asleep on your arm. It was maddening and it was 24/7.
For two years I sought answers and got treated for things I didn't have. One doc put me on diabetes meds because to him it was obvious I had diabetes even without a test. He almost killed me. The physicians creed seems to state: "We hold these truths to be self-evident.....if you're fat this WILL be the root cause of all your health problems." Patient: "Dr., I think I've deviated my septum, contracted strep throat, and possibly sustained potentially fatal injuries in a car accident." Doctor: "I told you to lose weight!"
So, lacking diabetes I kept seeking answers. I found a neurologist who put on me on a med that helped immensely with the leg/foot issues but didn't answer the reason why. They suspected MS and examined my cranial cavity, through an MRI, for evidence of a brain. The brain was there but lesions were not. That was a good thing. More years, more meds, fewer answers. The doctor wanted me to see an environmental specialist at UCSF or Stanford to hunt down problems with a lead exposure in my past. Someday I would if the insurance agreed. Lots of sickness plagued me in between times and I never knew why I got sick so easily or felt weird, or exhausted.
Fast forward a few years and I came home from a family vacation in Hawaii to the next phase of my adventure. Now my liver and spleen were sick, too, and bizarre things began to happen to me including intermittent tremors, weakness, stomach pain, and a near complete inability to take a variety of meds. I will spare you the details your Aunt Ethel wouldn't but, suffice it to say, there were other symptoms and you'll love me for not telling you what they were.
Now, I'm not wild about having my picture taken but there are truly places cameras just don't belong: in your body would make the top of my list. When you consider it, the medical paparazzi only have a few entrances to swarm when trying to get that perfect internal shot. And you will not have an opportunity to cover any of those entrances with a newspaper to avoid prying eyes. They never got the money shot, the smoking gun, the CSI evidence. But somewhere out there I'm sure there's a flattering picture of my colon.
At least the next phase took me to UCSF where they were promptly unable to tell me anything. Well, not that promptly actually. It took two years to discover that the damage was progressing and they had no idea why. More suspicions, more MRI's, and more needles in the muscles to measure progressive muscle loss in my feet. More glow-in-the-dark radiological tests, more dead ends, more conjecture. In the meantime I searched the internet high and low to diagnose myself. Physicians love it when you do this, especially if you offer your input. You will have "NUTCASE" stamped in red letters on the front of your chart.
Finally, with another attack of whatever this is a few months ago, I plopped myself in my primary care doctor's chair and said, "We gotta figure this out. Would you check me for this, this, and this?" He stamped "NUTCASE" on the back of my chart, too, and agreed. Son of a gun.....everything came back abnormal. Now we had a possible working diagnosis: Porphyria. Coproporphyria to be exact and also some immunity issues. Porphyria is a blood disorder that could be responsible for the majority of my issues. More tests were performed yesterday to make the final determination and I won't know the complete bottom line until the end of the month. But that's the way it's looking. I'll explain what it is in more detail in a future post when all the results are in but for now it's just good to have an idea of what it could be.
As Jamie and I sat discussing this with the hematologist yesterday he remarked, "What super smart doctor thought to look for this?" I demurred and said it was actually me who asked for the test. His tone turned decidedly away from "super smart" and he replied, "Well, you can't just figure out what you have that way." Well, there certainly hasn't been any other way, doc.
So, there you have it. I'm battling new symptoms that leave me feeling faint and shaky, and with high blood pressure. It's all making me lose weight. I've dropped 20 lbs. since August. That's the up side. And the antidote for these symptoms is immediate sugar. So, if you see me laying around in a coma, just shove a cookie in my mouth.
There really is a silver lining to just about everything.
Copyright 12/08
For the rest of you compassionate souls who've decided to stick around, here's the lowdown on the latest installment of, "As The Stomach Turns."
You may know I have battled "The Mysterious Malady" for about ten years. It started with my feet and legs going to sleep as I sat teaching the kids one day. Unlike the rest of me, they decided to never wake up again. Think the pins and needles after you've fallen asleep on your arm. It was maddening and it was 24/7.
For two years I sought answers and got treated for things I didn't have. One doc put me on diabetes meds because to him it was obvious I had diabetes even without a test. He almost killed me. The physicians creed seems to state: "We hold these truths to be self-evident.....if you're fat this WILL be the root cause of all your health problems." Patient: "Dr., I think I've deviated my septum, contracted strep throat, and possibly sustained potentially fatal injuries in a car accident." Doctor: "I told you to lose weight!"
So, lacking diabetes I kept seeking answers. I found a neurologist who put on me on a med that helped immensely with the leg/foot issues but didn't answer the reason why. They suspected MS and examined my cranial cavity, through an MRI, for evidence of a brain. The brain was there but lesions were not. That was a good thing. More years, more meds, fewer answers. The doctor wanted me to see an environmental specialist at UCSF or Stanford to hunt down problems with a lead exposure in my past. Someday I would if the insurance agreed. Lots of sickness plagued me in between times and I never knew why I got sick so easily or felt weird, or exhausted.
Fast forward a few years and I came home from a family vacation in Hawaii to the next phase of my adventure. Now my liver and spleen were sick, too, and bizarre things began to happen to me including intermittent tremors, weakness, stomach pain, and a near complete inability to take a variety of meds. I will spare you the details your Aunt Ethel wouldn't but, suffice it to say, there were other symptoms and you'll love me for not telling you what they were.
Now, I'm not wild about having my picture taken but there are truly places cameras just don't belong: in your body would make the top of my list. When you consider it, the medical paparazzi only have a few entrances to swarm when trying to get that perfect internal shot. And you will not have an opportunity to cover any of those entrances with a newspaper to avoid prying eyes. They never got the money shot, the smoking gun, the CSI evidence. But somewhere out there I'm sure there's a flattering picture of my colon.
At least the next phase took me to UCSF where they were promptly unable to tell me anything. Well, not that promptly actually. It took two years to discover that the damage was progressing and they had no idea why. More suspicions, more MRI's, and more needles in the muscles to measure progressive muscle loss in my feet. More glow-in-the-dark radiological tests, more dead ends, more conjecture. In the meantime I searched the internet high and low to diagnose myself. Physicians love it when you do this, especially if you offer your input. You will have "NUTCASE" stamped in red letters on the front of your chart.
Finally, with another attack of whatever this is a few months ago, I plopped myself in my primary care doctor's chair and said, "We gotta figure this out. Would you check me for this, this, and this?" He stamped "NUTCASE" on the back of my chart, too, and agreed. Son of a gun.....everything came back abnormal. Now we had a possible working diagnosis: Porphyria. Coproporphyria to be exact and also some immunity issues. Porphyria is a blood disorder that could be responsible for the majority of my issues. More tests were performed yesterday to make the final determination and I won't know the complete bottom line until the end of the month. But that's the way it's looking. I'll explain what it is in more detail in a future post when all the results are in but for now it's just good to have an idea of what it could be.
As Jamie and I sat discussing this with the hematologist yesterday he remarked, "What super smart doctor thought to look for this?" I demurred and said it was actually me who asked for the test. His tone turned decidedly away from "super smart" and he replied, "Well, you can't just figure out what you have that way." Well, there certainly hasn't been any other way, doc.
So, there you have it. I'm battling new symptoms that leave me feeling faint and shaky, and with high blood pressure. It's all making me lose weight. I've dropped 20 lbs. since August. That's the up side. And the antidote for these symptoms is immediate sugar. So, if you see me laying around in a coma, just shove a cookie in my mouth.
There really is a silver lining to just about everything.
Copyright 12/08
Wednesday, December 3, 2008
Egocentrism
I am grappling with guilt.
As I pondered my blog today it occurred to me that writing a blog might be an exercise in self aggrandizement. I mean, by its very nature aren't I saying, "Hey! Look at me and be riveted by my fascinating exploits and intrigues?" I guess if you're a biographer or journalist (and other good examples I'm too lazy to recall right now), you're writing about other people and issues. But aren't you still saying, "I can tell that story better than anyone else?" Maybe. If you are, if I am, all I have to say is, "We better be right, Bucky."
Hoping I won't let you down. Oh for Pete's sake. You KNOW I will. That'll be good for me, too. I'll get over all this naval gazing. Hey, is that lint?
Copyright 12/08
As I pondered my blog today it occurred to me that writing a blog might be an exercise in self aggrandizement. I mean, by its very nature aren't I saying, "Hey! Look at me and be riveted by my fascinating exploits and intrigues?" I guess if you're a biographer or journalist (and other good examples I'm too lazy to recall right now), you're writing about other people and issues. But aren't you still saying, "I can tell that story better than anyone else?" Maybe. If you are, if I am, all I have to say is, "We better be right, Bucky."
Hoping I won't let you down. Oh for Pete's sake. You KNOW I will. That'll be good for me, too. I'll get over all this naval gazing. Hey, is that lint?
Copyright 12/08
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