2011 Revelations
Last year was an exercise in rediscovery of myself. I forged ahead with a new job and a new musical endeavor, wading into unfamiliar but exciting waters which nourished and completed me.
2011 was an interesting compliment to 2010, although mostly unblogged. Rediscovery gave way to revelation this year, a revelation rather dark and unexpected. I finished last year relatively refreshed after having been off work for a while due to my jaw surgery, and was looking forward to hitting 2011 with verve. Didn't happen. Very quickly, I grew tired again, unreplenished by sleep, dragging, leaden. Fed up, I began a systematic medical process of elimination to get to the bottom of this fatigue.
One of the consistent themes throughout my life, since I was about 16-17 years old, is being tired. I remember being 17 and struggling to walk up the hill to my house at 1pm on a Sunday afternoon because fatigue was on me like an elephant. I remember being 25 and drooping at my desk at 3pm, despite eating a relatively healthy diet and working out nearly every day. I remember being 31, walking down the hall at work, and thinking, "Jesus fucking christ, is this how it's going to be FOREVER? Will there ever be a day when I'm not so bloody, deathly tired?"
This isn't "I stayed up too late last night" tired. It's not "I eat a shitty diet" tired. It's not "I'm stressed" tired, or "I'm depressed" tired, or "I exercised a lot yesterday" tired or "I played a show last night" tired.
This is "each of my limbs is moored with a five pound weight and I could sleep for a month and it wouldn't do a goddamn thing" tired.
I've reduced stress, meditated, been mindful, gotten more sleep, gotten better sleep, eaten more protein, eaten more vegetables, eaten more organic food, exercised, stopped coffee, been more true to myself and guess what? Nothing works. I'm tired when I take care of myself, tired when I don't.
Daily I hear stories of friends bouncing out of bed, ready to take on the world. I have about one of those days a month. If I'm lucky, I get three or four in a row. The rest of the time is a gray drag I steadfastly ignore, forcing this leaden carcass of mine to live life. You may read this and be puzzled, as you probably know me as the ball of energy on stage or the person who hauls ass down the hall at work and is eternally frustrated by people who are slow. I hide it. At shows, the fatigue is pushed back for the performance and a few hours after, at work it disappears in bursts and returns as fast as it left.
Long and short is this year I decided I was sick of it and marched myself off to the endocrinologist to find an ANSWER.
Probably thyroid, I pre-diagnosed. That would be a tidy explanation of the fatigue, poor sleep, poor concentration, sporadic hair loss, weird dry-oily skin and inconstant vision. But no, levels were normal. A small dose of synthroid proved beyond a shadow of a doubt that I did not need MORE thyroid hormone. Horrors, that overclocked, strangling, heart racing day.
Ok then, I'm not 20 any more so maybe the dreaded peri-menopause? Nope, levels for that were normal too. Pituitary tumor? Nope (and glad for that). Polycystic ovarian syndrome? Not that either (the doc really thought he had it nailed on that one, but I knew he was wrong).
What else? Grasping at straws, the endo ran the umpteenth blood test, this time for rheumatological factors and got a weak positive rheumatoid arthritis (ANA antibody) titer. Well, that sucks. I know several people who suffer from RA; it's a horrible, painful disease which I do not have the time for. I'm just getting good at guitar - I don't need my hands taken away from me!
The rheumatologist sent me packing to the lab with another blood test slip. I didn't think much of it, to be honest - after so many inconclusive blood tests, you stop getting your hopes up after a point.
And then I got my answer. THE ANSWER.
I tested positive for something called SS-A antibodies. Coupled with my overflowing cornucopia of lifelong symptoms, the rheum confidently diagnosed me with something called undifferentiated connective tissue disease, or UCTD.
Suddenly, every symptom I've ever had in my life made sense: a dreadful downward glissando focus pull horror movie sense that struck me with deep, numbing fear.
• In my teens: the incapacitating chest pains I used to get when exercising; take a breath and go to your knees to start getting right with the afterlife, because pain this bad can't possibly be anything other than fatal. The bizarre blistering rash I got for a few summers when exposed to the sun. The sudden-onset wave of crushing tiredness followed by body-wide warm, weak, stiff joints for several weeks afterward. The easy-to-dislocate shoulders and clicky knees. The endless, gigantic canker sores. The endometriosis and other delightful female problems.
• As a young adult: Get rid of the rash and chest pains, keep the endometriosis, weak joints and fatigue. Add exercise depleting rather than energizing me. Add generally poorly behaved lungs, particularly with upper respiratory infections.
• As a mature adult: Keep all of the above and add: the randomly swollen finger or toe or shoulder or knee with no radiological presentation. Sporadic hair loss. A bizarre stupefaction that steals my intelligence, where I can't confidently remember your name even though I've been your friend for years. Random burning/crushing chest pains. Undeniable asthma. Revisit the crushing fatigue and whole body agony. You're not supposed to be able to feel the joints in your sacrum burning like red hot rivers of lava. That was me at MDF this year. Gastrointestinal symptoms: to go or not to go or to not be able to stop going, that is the question.
As it sank in, I realized I never really wanted this day of revelation to come. It was easier to think of the symptoms as separate and individual, like the cells of The Thing, each its own microcosm of annoyance but for the most part, unconnected. Added together, this was a heavy weight. This was the sound that starts the first Deicide album. My immune system is eating my body. It has been, on and off, for the last 25 years. The toxins released into my bloodstream from my eternal inflammation is what is making me tired. No wonder. No wonder at all.
And it's never going to go away.
I grew up in the rural pastures of Western New York, playing in the creeks and streams and culverts. Seems healthy, until you think of all the farms around our property. All that fertilizer run off. All those chemicals and petroleum byproducts leaching from the highway cut into the northern slope of the aquifer feeding the well from which we drank and washed. And the creeks and streams in which I played for endless hours? Lined by summer houses with septic tanks and leach fields and in some cases, pipes dumping raw sewage straight into the water. The great, black rotting hulk of Bethlehem Steel was a mere 10 miles away; we couldn't smell the sulfurous reek of it at our house but now that I think of it, the breeze must have blown that particulate to us. Add in the cheap, overprocessed welfare diet on which I subsisted. My parents smoking four packs of cigarettes a day plus our wood burning stove belching black smoke into the house for me to breathe. My mother with her leukemia. So many female relatives acquaintances with strange cancers and fibromylagia. Let's not forget Love Canal. Oh yeah, then go to school for art and spend four years covered in various kinds of ink, oil paint, paint thinner, rubber cement and Duco glue just down the road from the deadly Eastman Kodak plant.
I'll say it again: It's really no wonder at all.
I spent a lot of this year being alternately sad and angry about this diagnosis. FML and all that.
Wasted time.
So what's the wrap up, the good news? I've made it 25 years staying undifferentiated. My last blood test was negative for SS-A antibodies. I may never fully present with lupus, rheumatoid arthritis, Sjögren's syndrome or scleroderma. I don't even have enough consistent symptoms to warrant going on Plaquenil treatment. Even on my most tired days, I can still get up and go to work, still find the energy to smile and run through a few scales on the guitar. At worst, it gives me some darned good material for song lyrics.
If you've been tired all your life and the doctors can't find anything wrong and are staring to look at you sidelong while writing "psychosomatic illness" in your chart, do yourself a favor and get a rheumatoid factor blood test. You might just find out something you didn't really want to know that helps your life make sense. And in that knowing, you can understand some of the whys and the whats, and then just get on with living.
That's what I'm going to do, UCTD be damned.
Best wishes to you all in 2012 and keep checking back for news about Morgengrau, Hod, Drifter!
2011 was an interesting compliment to 2010, although mostly unblogged. Rediscovery gave way to revelation this year, a revelation rather dark and unexpected. I finished last year relatively refreshed after having been off work for a while due to my jaw surgery, and was looking forward to hitting 2011 with verve. Didn't happen. Very quickly, I grew tired again, unreplenished by sleep, dragging, leaden. Fed up, I began a systematic medical process of elimination to get to the bottom of this fatigue.
One of the consistent themes throughout my life, since I was about 16-17 years old, is being tired. I remember being 17 and struggling to walk up the hill to my house at 1pm on a Sunday afternoon because fatigue was on me like an elephant. I remember being 25 and drooping at my desk at 3pm, despite eating a relatively healthy diet and working out nearly every day. I remember being 31, walking down the hall at work, and thinking, "Jesus fucking christ, is this how it's going to be FOREVER? Will there ever be a day when I'm not so bloody, deathly tired?"
This isn't "I stayed up too late last night" tired. It's not "I eat a shitty diet" tired. It's not "I'm stressed" tired, or "I'm depressed" tired, or "I exercised a lot yesterday" tired or "I played a show last night" tired.
This is "each of my limbs is moored with a five pound weight and I could sleep for a month and it wouldn't do a goddamn thing" tired.
I've reduced stress, meditated, been mindful, gotten more sleep, gotten better sleep, eaten more protein, eaten more vegetables, eaten more organic food, exercised, stopped coffee, been more true to myself and guess what? Nothing works. I'm tired when I take care of myself, tired when I don't.
Daily I hear stories of friends bouncing out of bed, ready to take on the world. I have about one of those days a month. If I'm lucky, I get three or four in a row. The rest of the time is a gray drag I steadfastly ignore, forcing this leaden carcass of mine to live life. You may read this and be puzzled, as you probably know me as the ball of energy on stage or the person who hauls ass down the hall at work and is eternally frustrated by people who are slow. I hide it. At shows, the fatigue is pushed back for the performance and a few hours after, at work it disappears in bursts and returns as fast as it left.
Long and short is this year I decided I was sick of it and marched myself off to the endocrinologist to find an ANSWER.
Probably thyroid, I pre-diagnosed. That would be a tidy explanation of the fatigue, poor sleep, poor concentration, sporadic hair loss, weird dry-oily skin and inconstant vision. But no, levels were normal. A small dose of synthroid proved beyond a shadow of a doubt that I did not need MORE thyroid hormone. Horrors, that overclocked, strangling, heart racing day.
Ok then, I'm not 20 any more so maybe the dreaded peri-menopause? Nope, levels for that were normal too. Pituitary tumor? Nope (and glad for that). Polycystic ovarian syndrome? Not that either (the doc really thought he had it nailed on that one, but I knew he was wrong).
What else? Grasping at straws, the endo ran the umpteenth blood test, this time for rheumatological factors and got a weak positive rheumatoid arthritis (ANA antibody) titer. Well, that sucks. I know several people who suffer from RA; it's a horrible, painful disease which I do not have the time for. I'm just getting good at guitar - I don't need my hands taken away from me!
The rheumatologist sent me packing to the lab with another blood test slip. I didn't think much of it, to be honest - after so many inconclusive blood tests, you stop getting your hopes up after a point.
And then I got my answer. THE ANSWER.
I tested positive for something called SS-A antibodies. Coupled with my overflowing cornucopia of lifelong symptoms, the rheum confidently diagnosed me with something called undifferentiated connective tissue disease, or UCTD.
Suddenly, every symptom I've ever had in my life made sense: a dreadful downward glissando focus pull horror movie sense that struck me with deep, numbing fear.
• In my teens: the incapacitating chest pains I used to get when exercising; take a breath and go to your knees to start getting right with the afterlife, because pain this bad can't possibly be anything other than fatal. The bizarre blistering rash I got for a few summers when exposed to the sun. The sudden-onset wave of crushing tiredness followed by body-wide warm, weak, stiff joints for several weeks afterward. The easy-to-dislocate shoulders and clicky knees. The endless, gigantic canker sores. The endometriosis and other delightful female problems.
• As a young adult: Get rid of the rash and chest pains, keep the endometriosis, weak joints and fatigue. Add exercise depleting rather than energizing me. Add generally poorly behaved lungs, particularly with upper respiratory infections.
• As a mature adult: Keep all of the above and add: the randomly swollen finger or toe or shoulder or knee with no radiological presentation. Sporadic hair loss. A bizarre stupefaction that steals my intelligence, where I can't confidently remember your name even though I've been your friend for years. Random burning/crushing chest pains. Undeniable asthma. Revisit the crushing fatigue and whole body agony. You're not supposed to be able to feel the joints in your sacrum burning like red hot rivers of lava. That was me at MDF this year. Gastrointestinal symptoms: to go or not to go or to not be able to stop going, that is the question.
As it sank in, I realized I never really wanted this day of revelation to come. It was easier to think of the symptoms as separate and individual, like the cells of The Thing, each its own microcosm of annoyance but for the most part, unconnected. Added together, this was a heavy weight. This was the sound that starts the first Deicide album. My immune system is eating my body. It has been, on and off, for the last 25 years. The toxins released into my bloodstream from my eternal inflammation is what is making me tired. No wonder. No wonder at all.
And it's never going to go away.
I grew up in the rural pastures of Western New York, playing in the creeks and streams and culverts. Seems healthy, until you think of all the farms around our property. All that fertilizer run off. All those chemicals and petroleum byproducts leaching from the highway cut into the northern slope of the aquifer feeding the well from which we drank and washed. And the creeks and streams in which I played for endless hours? Lined by summer houses with septic tanks and leach fields and in some cases, pipes dumping raw sewage straight into the water. The great, black rotting hulk of Bethlehem Steel was a mere 10 miles away; we couldn't smell the sulfurous reek of it at our house but now that I think of it, the breeze must have blown that particulate to us. Add in the cheap, overprocessed welfare diet on which I subsisted. My parents smoking four packs of cigarettes a day plus our wood burning stove belching black smoke into the house for me to breathe. My mother with her leukemia. So many female relatives acquaintances with strange cancers and fibromylagia. Let's not forget Love Canal. Oh yeah, then go to school for art and spend four years covered in various kinds of ink, oil paint, paint thinner, rubber cement and Duco glue just down the road from the deadly Eastman Kodak plant.
I'll say it again: It's really no wonder at all.
I spent a lot of this year being alternately sad and angry about this diagnosis. FML and all that.
Wasted time.
So what's the wrap up, the good news? I've made it 25 years staying undifferentiated. My last blood test was negative for SS-A antibodies. I may never fully present with lupus, rheumatoid arthritis, Sjögren's syndrome or scleroderma. I don't even have enough consistent symptoms to warrant going on Plaquenil treatment. Even on my most tired days, I can still get up and go to work, still find the energy to smile and run through a few scales on the guitar. At worst, it gives me some darned good material for song lyrics.
If you've been tired all your life and the doctors can't find anything wrong and are staring to look at you sidelong while writing "psychosomatic illness" in your chart, do yourself a favor and get a rheumatoid factor blood test. You might just find out something you didn't really want to know that helps your life make sense. And in that knowing, you can understand some of the whys and the whats, and then just get on with living.
That's what I'm going to do, UCTD be damned.
Best wishes to you all in 2012 and keep checking back for news about Morgengrau, Hod, Drifter!
posted by Skullgal at 5:01 PM
2 Comments:
Goodness, it's been so long since I even looked at my own blogs, I totally missed your updates! Terrifying as it may be, I imagine it's good to at least know what it is you're up against, and I look forward to reading about (and, in some cases, seeing in person) your accomplishments in 2012!
Also, I followed the link to read about the Love Canal, but got distracted by what a potentially cool band name Hooker Chemical is.
New Hexlust tune - Hooker Chemical! You guys could totally do something with that.
And yeah, UCTD is scary but doing things like playing LA this past weekend with Hod make all the difference. I fully believe that shows & music help keep me going strong!
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