When I first realized I had a disease that could destroy my life, and then kill me, I was afraid.
Sleepless nights were spent fretting about what direction my illness would take and whether I would live to be .... whatever. I come from a long line of people who live to be very, very old. I intended to continue that trend for another generation.
After endless doctor visits, tests and consultations the worries waned. My disease became familiar. My condition stabilized mostly. A year went by and then another and although I was in pain all the time, none of my organs were being compromised. Fear slid into a separate compartment of my psyche, more of a dull ache I had to look for than a sharp jab that demanded immediate attention.
The one medical test I never had was an MRI. My insurance doesn't cover it until I've met the annual deductible of approximately $1 million. OK, that's an exaggeration. But the deductible is high enough that I haven't met it in either of the last two years, even with my frequent medical visits.
As a result, nobody has any idea what is going on in my brain. No pun intended. The episodes of vertigo are put off to inner ear inflammation. Cycles of lousy balance -- the same. Or maybe I'm metabolizing meds differently for a while.
But always, in the back of my mind, has been the niggling fear that my growing list of nervous system complaints might be caused by something even worse than what I know I have.
I have a good friend who was told she had lupus and Sjogren's Syndrome years ago and opted never to take treatment. Although she was horribly sick for a period, through the years her worst symptoms eased a bit.
Then a couple months ago her symptoms worsened. She and I shared numb and tingling hands and feet, dizzy spells and weird balance. The symptoms that are eased by my medications went untreated in my friend. She just shrugged it all off.
Until the day she fell down the stairs. Headfirst. Backwards. Reluctantly she started the cycle of testing again. One doctor visit led to another. Last week she got the news: her physician suspects Muscular Sclerosis. An MRI is scheduled to find out for sure. My friend was shaken by the news; her husband is afraid. MS is a nasty disease, one that strikes fear in almost any one's heart.
After all, who in our generation could forget those terrifying television public service ads from the 60s and 70s? Some personality would describe horrid symptoms and then as the screen faded to gray, a solemn voice would intone 'MS, the great crippler of young adults.'
My friend told me she may have MS on the same day my husband brought a newspaper article to me and told me I needed to read it.
'These are your symptoms,' he said. I explained that there is no way to find out whether or not my symptoms are MS without an MRI, and that we just can't afford to pay out of pocket for such a high-end medical test. Those kinds of diagnostics are priced exorbitantly because insurance companies will pay the fees. As a result, people like me who don't have insurance coverage are up a creek with no brain scan.
I know I'm lucky to have the insurance coverage I do. Millions of Americans have no coverage. But I still burn with anger when I think what it will take to manage an MRI, paying in cash. There will be the test, the technician who performs the test, the physician who reads the test and the neurologist who tells me the result. The cost will be in the thousands of dollars. If I have the test.
The good Dr. B says it's not necessary. I'm 90 percent sure he's right. It's that other 10 percent that haunts my mind in the night, and sometimes even in the day. I'm trying not to let it push me around.
Somewhere down the road I think I will have to find out for sure. Because knowing, even the worst, is better than the fear of what might be.
Peace be with you, and may you always be free of fear.
Showing posts with label lupus. Show all posts
Showing posts with label lupus. Show all posts
Saturday, October 13, 2007
Wednesday, October 10, 2007
Sweetness and Light
Life is sweet right now
My husband has taken time off work and we are spending days together in that way people do when they've been together a long time. Sometimes we can't get enough closeness and the next bit we find that we're tripping over one another. It's good. That kind of time creates small moments that are wonderful. He finished the gate today while I poop-scooped the yard. We were together and it felt right.
Yesterday we drove all over, looking for places where he can finish hikes into the mountains without climbing through someone's backyard. One day we bought fruit. Another day we went to Leavenworth and bought me a hat.
Life's minutiae is sweet. During these times, pain just is. We both know the pain sits on my shoulder, but we agree unspokenly to ignore the beast. All daily activities are planned around my afternoon nap, which is sacrosanct.
Maybe it's the lingering light of fall days, or the surprise of looking up to see that a single branch of the poplar tree went golden over night. Whatever the reason, these days glow. Asters are blooming in all shades of pinks and purples, the flame bush is in its glory now.
I wonder sometimes if that pathetic little bush that clings to life through spring and summer, finally managing to cover itself with leaves at the end of the season, knows that only the fall display of scarlet leaves saves it from the compost heap?
So I hurt. It's there under everything, on top of everything. But not so horribly today that I feel the need to whimper and rage. The concession is that life is quiet. There will be no late-night drive over the mountains for a movie in Seattle, no staying out in the cold watching the fall sky turning to winter.
Instead, I'm about to go upstairs and make tea for two people. I think we will drink our tea while walking through the garden, one more time, spotting a place that needs more bulbs and a plant that needs dividing and the surprising turn to scarlet of a cranes bill geranium leaf.
Then I'll sleep and maybe dream about the autumnal turning. And breathe in this sweet time while it stays.
Peace and Blessings
My husband has taken time off work and we are spending days together in that way people do when they've been together a long time. Sometimes we can't get enough closeness and the next bit we find that we're tripping over one another. It's good. That kind of time creates small moments that are wonderful. He finished the gate today while I poop-scooped the yard. We were together and it felt right.
Yesterday we drove all over, looking for places where he can finish hikes into the mountains without climbing through someone's backyard. One day we bought fruit. Another day we went to Leavenworth and bought me a hat.
Life's minutiae is sweet. During these times, pain just is. We both know the pain sits on my shoulder, but we agree unspokenly to ignore the beast. All daily activities are planned around my afternoon nap, which is sacrosanct.
Maybe it's the lingering light of fall days, or the surprise of looking up to see that a single branch of the poplar tree went golden over night. Whatever the reason, these days glow. Asters are blooming in all shades of pinks and purples, the flame bush is in its glory now.
I wonder sometimes if that pathetic little bush that clings to life through spring and summer, finally managing to cover itself with leaves at the end of the season, knows that only the fall display of scarlet leaves saves it from the compost heap?
So I hurt. It's there under everything, on top of everything. But not so horribly today that I feel the need to whimper and rage. The concession is that life is quiet. There will be no late-night drive over the mountains for a movie in Seattle, no staying out in the cold watching the fall sky turning to winter.
Instead, I'm about to go upstairs and make tea for two people. I think we will drink our tea while walking through the garden, one more time, spotting a place that needs more bulbs and a plant that needs dividing and the surprising turn to scarlet of a cranes bill geranium leaf.
Then I'll sleep and maybe dream about the autumnal turning. And breathe in this sweet time while it stays.
Peace and Blessings
Wednesday, October 3, 2007
Sun Worship
Every summer for years I dreaded vacation.
It always started innocently enough. We would pack up the car, strap in the boys and head for someplace cooler than the pits of Phoenix. On arrival we would check into the motel or set up the tent and play for the rest of the day. Evening would come and supper and bedtime for two exhausted, hyped up little boys.
And I would get sick.
Like clockwork it happened, summer after summer. By bedtime on the first day my husband would find himself with two cranky kids and a wife sporting a fever, headache, body pains and maybe even vomiting.
As you can imagine, my little vacation ritual created more than a small amount of stress.
It wasn't until I was labeled chronic that I realized what was happening to me: I have major photo sensitivity. It can happen to anybody. Chemo patients are likely to be photosensitive. Likewise people taking certain medications. I, and a lot of others, are photo sensitive because our immune systems have gone berserk.
This link will take you to a site that explains the skin reaction to the sun that many people suffer. Rashes, itching, peeling skin. It sucks. But some of us don't just have skin reactions. For some of us, exposure to UV rays can trigger an all out immune system response. When our immune systems find no invaders to attack, they become like hyper, sugared-up preschoolers at a birthday party and attack their hosts. In this case, 'hosts' translates as 'organs'.
I was already chronic back then, I just didn't know it. Hindsight is 20-20 and looking back I can see a pattern of physical conditions that some medical person probably should have looked at all together and realized that I was a very sick woman.
Instead, my medical providers usually told me I needed to lower the stress level in my life, perhaps with meditation or yoga.
Yes, that might have been helpful. But a correct diagnosis would have been even better.
As it happened, the good Dr. B was the first medical provider to connect what happened to my skin out in the sun with my physical misery.
Since my early twenties I have known that being outdoors without sunscreen would result in a face full of ugly, painful 'zits.' OK, call me slow on the uptake, but I never connected the face stuff with the fever, hurting, throwing up stuff.
Then a few months after my original diagnosis I found myself in Dr. B's exam room complaining of a nasty flare of symptoms. While poking and prodding, the good doctor pointed at one of the eruptions on my face and said 'What's that?'
'Um, a zit'
'And why do you have it on your face?'
'Because I was out gardening and forgot to put on sunscreen. It always happens.'
'You mean it always happens when you go out in the sun?'
At this point I was beginning to feel very, very stupid. Sure enough, Dr. B confirmed my lack of connectivity with typical terseness:
'That's not a zit. It's a sore. You're photo sensitive'
Oh goody. Another label.
Dr. B. then went on to explain that the condition of my face just might match the condition of my internal bits and pieces and that was probably why I was sitting in his office waiting for a depo-medrol shot and whining about how bad I hurt.
I got the shot and short term relief. I also got a long term medical order to stay out of the sun. Or more accurately, out of UV rays. If I have to be in an exposed place, then I have to wear sunscreen, a hat, long sleeves and long pants. If those clothes could provide UV protection, so much the better.
These days I don't go out in the lovely, sunshiny part of the day. Walks down by the river are of necessity short. Even dressed right I fatigue quickly when I'm out in the sun.
Or at Costco. Or Home Depot. Or any other big box store with high voltage florescent lights.
You see, those lights save energy and provide great visibility. But they also put out UV in big amounts. That's why when you see me at Costco in December I'm wearing a hat. Or when I'm in Target in July I have on long sleeves and long pants and that damned ugly hat I have to wear all the time. My husband has jokingly suggested a burkha. Sigh.
There is no cure for photo sensitivity, just like with most chronic conditions.
I'm not sure what was worse, really, enduring the misery of feeling so sick on summer vacations or just not having summer vacations any more. We don't go to the beach now. Or camping. My husband and I were serious birdwatchers. But birds mostly get out and about in the sun and that's no good for me.
We don't ride our bikes down on the river loop anymore and long walks, even if I feel up to it, are out of the question. My garden, which I cherish with all my heart, has become my husband's gift to me. He now is the one who plants and tends. He makes the garden thrive and hum with life. And he calls it mine.
On fine summer days he'll call me to the door, pushing that ugly hat firmly on my head, making me put on the long sleeved jacket and then pulling me out to the garden to spend a few precious moments. We admire the new blooms, cluck over the clematis that just never has done well, marvel at the abundance of life.
So it is that one summer ritual has replaced another. The old one was hell. The new one is fleeting and sweet. Just like the burst of sweetness from a honeysuckle bloom. Just like the warmth of the sun that beats steady on my back, just for a moment. Life is good.
I have to smile then, because I realize that along with all the other labels in my life, I am chronically blessed.
Peace be with you.
It always started innocently enough. We would pack up the car, strap in the boys and head for someplace cooler than the pits of Phoenix. On arrival we would check into the motel or set up the tent and play for the rest of the day. Evening would come and supper and bedtime for two exhausted, hyped up little boys.
And I would get sick.
Like clockwork it happened, summer after summer. By bedtime on the first day my husband would find himself with two cranky kids and a wife sporting a fever, headache, body pains and maybe even vomiting.
As you can imagine, my little vacation ritual created more than a small amount of stress.
It wasn't until I was labeled chronic that I realized what was happening to me: I have major photo sensitivity. It can happen to anybody. Chemo patients are likely to be photosensitive. Likewise people taking certain medications. I, and a lot of others, are photo sensitive because our immune systems have gone berserk.
This link will take you to a site that explains the skin reaction to the sun that many people suffer. Rashes, itching, peeling skin. It sucks. But some of us don't just have skin reactions. For some of us, exposure to UV rays can trigger an all out immune system response. When our immune systems find no invaders to attack, they become like hyper, sugared-up preschoolers at a birthday party and attack their hosts. In this case, 'hosts' translates as 'organs'.
I was already chronic back then, I just didn't know it. Hindsight is 20-20 and looking back I can see a pattern of physical conditions that some medical person probably should have looked at all together and realized that I was a very sick woman.
Instead, my medical providers usually told me I needed to lower the stress level in my life, perhaps with meditation or yoga.
Yes, that might have been helpful. But a correct diagnosis would have been even better.
As it happened, the good Dr. B was the first medical provider to connect what happened to my skin out in the sun with my physical misery.
Since my early twenties I have known that being outdoors without sunscreen would result in a face full of ugly, painful 'zits.' OK, call me slow on the uptake, but I never connected the face stuff with the fever, hurting, throwing up stuff.
Then a few months after my original diagnosis I found myself in Dr. B's exam room complaining of a nasty flare of symptoms. While poking and prodding, the good doctor pointed at one of the eruptions on my face and said 'What's that?'
'Um, a zit'
'And why do you have it on your face?'
'Because I was out gardening and forgot to put on sunscreen. It always happens.'
'You mean it always happens when you go out in the sun?'
At this point I was beginning to feel very, very stupid. Sure enough, Dr. B confirmed my lack of connectivity with typical terseness:
'That's not a zit. It's a sore. You're photo sensitive'
Oh goody. Another label.
Dr. B. then went on to explain that the condition of my face just might match the condition of my internal bits and pieces and that was probably why I was sitting in his office waiting for a depo-medrol shot and whining about how bad I hurt.
I got the shot and short term relief. I also got a long term medical order to stay out of the sun. Or more accurately, out of UV rays. If I have to be in an exposed place, then I have to wear sunscreen, a hat, long sleeves and long pants. If those clothes could provide UV protection, so much the better.
These days I don't go out in the lovely, sunshiny part of the day. Walks down by the river are of necessity short. Even dressed right I fatigue quickly when I'm out in the sun.
Or at Costco. Or Home Depot. Or any other big box store with high voltage florescent lights.
You see, those lights save energy and provide great visibility. But they also put out UV in big amounts. That's why when you see me at Costco in December I'm wearing a hat. Or when I'm in Target in July I have on long sleeves and long pants and that damned ugly hat I have to wear all the time. My husband has jokingly suggested a burkha. Sigh.
There is no cure for photo sensitivity, just like with most chronic conditions.
I'm not sure what was worse, really, enduring the misery of feeling so sick on summer vacations or just not having summer vacations any more. We don't go to the beach now. Or camping. My husband and I were serious birdwatchers. But birds mostly get out and about in the sun and that's no good for me.
We don't ride our bikes down on the river loop anymore and long walks, even if I feel up to it, are out of the question. My garden, which I cherish with all my heart, has become my husband's gift to me. He now is the one who plants and tends. He makes the garden thrive and hum with life. And he calls it mine.
On fine summer days he'll call me to the door, pushing that ugly hat firmly on my head, making me put on the long sleeved jacket and then pulling me out to the garden to spend a few precious moments. We admire the new blooms, cluck over the clematis that just never has done well, marvel at the abundance of life.
So it is that one summer ritual has replaced another. The old one was hell. The new one is fleeting and sweet. Just like the burst of sweetness from a honeysuckle bloom. Just like the warmth of the sun that beats steady on my back, just for a moment. Life is good.
I have to smile then, because I realize that along with all the other labels in my life, I am chronically blessed.
Peace be with you.
Wednesday, September 26, 2007
Where Are the Fog Lights?
For three hours I've been trying to pull my brain together and write about something important. It's not going to happen.
Maybe this is the time to explain brain fog. That's what we call it. If you're chronic you know what I'm talking about. If you're not, well, it's sort of like trying to sing underwater, only it has to do with thinking.
I don't know the physiological reason for brain fog. I know a lot of us have it. People with autoimmune diseases, chemo patients..... chronics.
In a past blog entry I explained how it is when I lose words. When full scale brain fog hits, all intellectual pursuits float in a viscous goo, just out of reach. Not only do I lose words, I lose the part of me that remembers why I wanted the words in the first place. It's an ironic state for me when I have spent my life writing for fun and profit. The only door I've ever known has slammed shut.
People who know that I'm sick but don't quite get it often ask why I don't freelance for magazines or newspapers. Obviously, the people who ask that haven't done it and don't know how much work freelance writing requires. Such effort and work is quite beyond me these days. Even if I could find the words and make the deadline and deliver something vaguely like what was assigned, there would be an even bigger problem.
Brain fog makes me unreliable. Sometimes things that I am absolutely certain I have done have absolutely not been done. Sometimes it's the other way around. And I confuse .... well, everything.
Nobody but my husband knows the depth of my confusion. And even he can't see it all.
Tonight all my traction is gone. I have words, but they won't fit together the right way. The story that needs telling will have to wait for another day. Tonight I will leave the keyboard and go play with my fabric.
Thank God there are so many windows.
Blessings,
Matriarch
Maybe this is the time to explain brain fog. That's what we call it. If you're chronic you know what I'm talking about. If you're not, well, it's sort of like trying to sing underwater, only it has to do with thinking.
I don't know the physiological reason for brain fog. I know a lot of us have it. People with autoimmune diseases, chemo patients..... chronics.
In a past blog entry I explained how it is when I lose words. When full scale brain fog hits, all intellectual pursuits float in a viscous goo, just out of reach. Not only do I lose words, I lose the part of me that remembers why I wanted the words in the first place. It's an ironic state for me when I have spent my life writing for fun and profit. The only door I've ever known has slammed shut.
People who know that I'm sick but don't quite get it often ask why I don't freelance for magazines or newspapers. Obviously, the people who ask that haven't done it and don't know how much work freelance writing requires. Such effort and work is quite beyond me these days. Even if I could find the words and make the deadline and deliver something vaguely like what was assigned, there would be an even bigger problem.
Brain fog makes me unreliable. Sometimes things that I am absolutely certain I have done have absolutely not been done. Sometimes it's the other way around. And I confuse .... well, everything.
Nobody but my husband knows the depth of my confusion. And even he can't see it all.
Tonight all my traction is gone. I have words, but they won't fit together the right way. The story that needs telling will have to wait for another day. Tonight I will leave the keyboard and go play with my fabric.
Thank God there are so many windows.
Blessings,
Matriarch
Sunday, September 23, 2007
Doctors and Other Problems
I want my life back. I want to be like I was before. I want to be cured.
That's what all chronics want. We never can quite give up the hope that somewhere out there is somebody with a cure. Because cures in our culture tend to come from doctors, we spend too much time and money looking for the right one.
I've done that. A lot. It didn't work.
These days I stick with my internist. He's the one who first diagnosed me with lupus. Dr. B has a lousy bedside manner, dismisses almost all my concerns as the products of an overly anxious imagination and at times treats me like an idiot child. On the upside, he has worked with me to find pain medication that will let me live, and he has told me he will increase my narcotic dose if I need.
He's clearly a superior physician.
Most people with autoimmune diseases are treated by rheumatologists. There is only one in my little town. When Dr. B gave me the referral to see the rheumatologist, who I will refer to as Dr. Rheumy, he did so with some trepidation.
"He's going to tell you that you don't have lupus," Dr. B said. So why was he sending me to this doctor who would undo the diagnosis he and I had so happily agreed upon? Well, that's how it's done.
So off I went to the good Dr. Rheumy, who indeed told me I didn't have lupus and wasn't really ill. He didn't believe the positive result of a test for Sjogren's Syndrome and had it redone twice. When it continued to come back positive, he informed me that it was really a mild disease and that I wasn't really sick and didn't really hurt.
OK that didn't work, but the good Dr. B started me on appropriate treatment for autoimmune disease and for discomfort. As the discomfort turned more and more into howling nasty pain, I looked for another doctor. Somebody with more answers. Somebody with a cure.
Let's just say I kissed a lot of frogs but all I got out of it was a good set of warts and about $4,000 in medical bills that my insurance company didn't think it should have to help pay.
Probably the lowest I sank was when I went to a highly recommended doctor who never looked at my medical history, tossed the questionnaire I had filled out and ignored all my questions. I was, he announced, suffering 'Female Pain Syndrome'. This was caused by childhood sexual abuse and ongoing abuse by my husband. Oh yeah, and by me being female.
I told him I had not been sexually abused as as child. He shook his head and talked briefly about denial and then started badgering me about my husband: 'Does he hit you?? Is he verbally and emotionally abusive???/
This time he didn't even pause to let me say that my husband is the kindest, gentlest man in the world and wouldn't abuse me or anybody else. Instead, he launched into the treatment: no pain medication of any kind. Instead, I would go to psychological counseling twice a week and take big doses of antidepressants to deal with the constant pain. I would learn to endure the pain and go on with my life despite it.
Because my clothes were in another room and I was wearing a facial tissue I had to wait for the madman with the stethoscope to leave before I could escape to my car.
I've run into other women who have had the same treatment from him. Yikes. Do you think anybody goes along with his crazy treatment plan?
There have been other doctors. You'll probably hear snippets of those visits. But for now I'm sticking with Dr. B. He may be insulting and rude, but he also writes my monthly prescription for morphine. He helped me when I was trying to qualify for Social Security Disability. And he's almost always available within the day or two after I call for a visit.
Maybe the most important thing Dr. B does is that he tells me I'm not going to be cured. He reminds me that my illness is progressive and that it is progressing. He tells me that nerve pain is hard to treat and that the options are limited. He keeps me anchored to hard reality.
While I don't like having my hopes popped like so many pretty balloons, I know that chasing cures won't do me any good. Hope is vital. Reality can't be ignored. When medical science comes up with a cure, Dr. B will write me a prescription.
Besides, I figure every visit with Dr. B from now on will give me at least one good blog entry. You just can't ask for more than that from a doctor.
Peace,
Matriarch
That's what all chronics want. We never can quite give up the hope that somewhere out there is somebody with a cure. Because cures in our culture tend to come from doctors, we spend too much time and money looking for the right one.
I've done that. A lot. It didn't work.
These days I stick with my internist. He's the one who first diagnosed me with lupus. Dr. B has a lousy bedside manner, dismisses almost all my concerns as the products of an overly anxious imagination and at times treats me like an idiot child. On the upside, he has worked with me to find pain medication that will let me live, and he has told me he will increase my narcotic dose if I need.
He's clearly a superior physician.
Most people with autoimmune diseases are treated by rheumatologists. There is only one in my little town. When Dr. B gave me the referral to see the rheumatologist, who I will refer to as Dr. Rheumy, he did so with some trepidation.
"He's going to tell you that you don't have lupus," Dr. B said. So why was he sending me to this doctor who would undo the diagnosis he and I had so happily agreed upon? Well, that's how it's done.
So off I went to the good Dr. Rheumy, who indeed told me I didn't have lupus and wasn't really ill. He didn't believe the positive result of a test for Sjogren's Syndrome and had it redone twice. When it continued to come back positive, he informed me that it was really a mild disease and that I wasn't really sick and didn't really hurt.
OK that didn't work, but the good Dr. B started me on appropriate treatment for autoimmune disease and for discomfort. As the discomfort turned more and more into howling nasty pain, I looked for another doctor. Somebody with more answers. Somebody with a cure.
Let's just say I kissed a lot of frogs but all I got out of it was a good set of warts and about $4,000 in medical bills that my insurance company didn't think it should have to help pay.
Probably the lowest I sank was when I went to a highly recommended doctor who never looked at my medical history, tossed the questionnaire I had filled out and ignored all my questions. I was, he announced, suffering 'Female Pain Syndrome'. This was caused by childhood sexual abuse and ongoing abuse by my husband. Oh yeah, and by me being female.
I told him I had not been sexually abused as as child. He shook his head and talked briefly about denial and then started badgering me about my husband: 'Does he hit you?? Is he verbally and emotionally abusive???/
This time he didn't even pause to let me say that my husband is the kindest, gentlest man in the world and wouldn't abuse me or anybody else. Instead, he launched into the treatment: no pain medication of any kind. Instead, I would go to psychological counseling twice a week and take big doses of antidepressants to deal with the constant pain. I would learn to endure the pain and go on with my life despite it.
Because my clothes were in another room and I was wearing a facial tissue I had to wait for the madman with the stethoscope to leave before I could escape to my car.
I've run into other women who have had the same treatment from him. Yikes. Do you think anybody goes along with his crazy treatment plan?
There have been other doctors. You'll probably hear snippets of those visits. But for now I'm sticking with Dr. B. He may be insulting and rude, but he also writes my monthly prescription for morphine. He helped me when I was trying to qualify for Social Security Disability. And he's almost always available within the day or two after I call for a visit.
Maybe the most important thing Dr. B does is that he tells me I'm not going to be cured. He reminds me that my illness is progressive and that it is progressing. He tells me that nerve pain is hard to treat and that the options are limited. He keeps me anchored to hard reality.
While I don't like having my hopes popped like so many pretty balloons, I know that chasing cures won't do me any good. Hope is vital. Reality can't be ignored. When medical science comes up with a cure, Dr. B will write me a prescription.
Besides, I figure every visit with Dr. B from now on will give me at least one good blog entry. You just can't ask for more than that from a doctor.
Peace,
Matriarch
Tuesday, August 28, 2007
Now Where Was I?
The problem with taking on a blog is that sooner or later it will become necessary to show the world (or at least the half dozen or so folks who have managed to find the blog) why you don't write for a living any more. I'm at a loss for words.
Literally. For the past two days I haven't been able to process language well.
One of the first symptoms to show it's nasty little face when I became aware of my illness was an increasing inability to write. I couldn't keep track of thoughts, ideas, conversations, assignments. And I couldn't think of words.
I was scared at first that I was developing early onset Alzheimers'. The words just would leave me, sometimes with my mouth open. All dressed up and nowhere to go, so to speak. Early on I found a way to gauge my days. If I could do a simple crossword puzzle early in the day, it was going to be a decent day. If I looked at the crossword puzzle page and couldn't make sense of the instructions or the clue words, well, sometimes I just went back to bed.
I have been reduced at times to wringing my hands, gritting my teeth and managing to choke out "the stuff....the red stuff.....the red stuff that's for french fries."
My husband and sons are used to it. They pretty much know what I'm talking about, even when I don't talk. But the rest of the world doesn't quite get it.
Frustration overwhelms me at times.
This is one of those times. I have a lovely blog entry in my head. It's all about ......something or other. But I just don't have whatever it is that makes me able to get words out of my head, push them down my arms and squeeze them through my fingers onto the keyboard.
For the record, it would have been witty, somewhat amusing and a bit informative. Really good stuff.
As it is, all you get tonight is the sad tale of a boring symptom of an autoimmune disease called Sjogren's Syndrome. Or maybe it's Lupus. Or vasculitis. Or fibromyalgia. Or a result of the migraine I had this morning. Or could be high blood pressure. Some people I know would say it's because of the medications I take. Never mind that the brain ooze started long before the first dose of anything. Regardless of which disease snatched my words, they're gone, and I'm muddle brained and thick headed and generally pretty foggy.
So check back tomorrow. The words will return. Always have so far.
And if you are chronic and you are also searching vainly for your lost words, don't worry. They're probably off playing with mine.
Peace be with you.
Literally. For the past two days I haven't been able to process language well.
One of the first symptoms to show it's nasty little face when I became aware of my illness was an increasing inability to write. I couldn't keep track of thoughts, ideas, conversations, assignments. And I couldn't think of words.
I was scared at first that I was developing early onset Alzheimers'. The words just would leave me, sometimes with my mouth open. All dressed up and nowhere to go, so to speak. Early on I found a way to gauge my days. If I could do a simple crossword puzzle early in the day, it was going to be a decent day. If I looked at the crossword puzzle page and couldn't make sense of the instructions or the clue words, well, sometimes I just went back to bed.
I have been reduced at times to wringing my hands, gritting my teeth and managing to choke out "the stuff....the red stuff.....the red stuff that's for french fries."
My husband and sons are used to it. They pretty much know what I'm talking about, even when I don't talk. But the rest of the world doesn't quite get it.
Frustration overwhelms me at times.
This is one of those times. I have a lovely blog entry in my head. It's all about ......something or other. But I just don't have whatever it is that makes me able to get words out of my head, push them down my arms and squeeze them through my fingers onto the keyboard.
For the record, it would have been witty, somewhat amusing and a bit informative. Really good stuff.
As it is, all you get tonight is the sad tale of a boring symptom of an autoimmune disease called Sjogren's Syndrome. Or maybe it's Lupus. Or vasculitis. Or fibromyalgia. Or a result of the migraine I had this morning. Or could be high blood pressure. Some people I know would say it's because of the medications I take. Never mind that the brain ooze started long before the first dose of anything. Regardless of which disease snatched my words, they're gone, and I'm muddle brained and thick headed and generally pretty foggy.
So check back tomorrow. The words will return. Always have so far.
And if you are chronic and you are also searching vainly for your lost words, don't worry. They're probably off playing with mine.
Peace be with you.
Sunday, August 26, 2007
Interlude
Have you ever eaten a fig right off the tree? It's warm and soft and round in your hand, a lovely, fragrant thing, almost too perfect to eat. But just almost, not totally. And when you eat it the flavor becomes the essence of summer sun and buzzing wasps and cool grass under your bare feet.
Life is good, even in the midst of pain and illness. We are given blessings every day.
Some days it is enough to remember that we are all children of God, precious in her sight and beautiful to behold.
Amen
Life is good, even in the midst of pain and illness. We are given blessings every day.
Some days it is enough to remember that we are all children of God, precious in her sight and beautiful to behold.
Amen
Thursday, August 23, 2007
The Chronic Life Begins
The sun was shining the day the doctor made me officially chronic. I had walked into his office a couple months earlier with a sound self-diagnosis made with the expert assistance of WebMD.com and my sister: Depression. It was a good self-DX and explained the months of increasing fatigue and brain fog that had resulted in the loss of most of my writing contracts and general confusion and anger in my household. After all, when a person's mental faculties go missing for a couple months, people start to wonder why.
So there I was, proclaiming myself depressed and holding out my hand for Prozac or some similar instant relief pill, ready to medicate myself back to normalcy. I left the office with my prescription, but only after leaving a bucket of blood over at the lab.
"Take the pills and rest as much as you can for the next few weeks. Stay in bed most of the time," the good doctor said. Yeah, right.... stay in bed in November. But as it turned out, staying in bed was about all I felt like doing. I took my little pills and I slept. As the month wore on, the depression I was so sure I was e xperiencing lifted, and the fatigue deepened. And a nagging sort of fingernails-on-a-chalkboard feeling had settled into my shoulders and scalp.
"You may need another antidepressant," my sister counselled. "Sometimes it takes months to find the right one for you."
Early in December I walked back into the good doctor's office and informed him that I was no longer depressed, matter of fact my mood was downright jolly. But my body was sicker than ever.
"Well, that's because you have Lupus," he said. He smiled. We laughed a bit. Woo hoo, hehe. Lupus. What a relief! The diagnosis -- which changed slightly in later months -- explained a lot, including the horrible itching in my lower back and arms. Not to worry, he said, take this little pill and this little pill and you'll be fine. I'll send you to the rheumatologist and he'll tell you what you need to do and everything will be fine."
It all seemed so simple. When I told my husband over lunch that I had Lupus, he was relieved. I was relieved. The dark cloud of the past few months lifted. We had a name for the reason I was falling asleep every time I sat down. I had pills to take, a specialist to see. Life would be normal again in just a few weeks.
I won't bore you with the details -- yet (smirk). Just know this: that was December 2002. Today is August 23, 2007 and the only way I can call my life "normal" is because the definition of that word has changed in my household.
So I'm chronic. And if you've read this far you may be chronic too. Maybe we can ride this beast together for a little while. Check back here for more posts. I'll try to write every day or so. But you guys -- you chronic lifers -- know how it is. When you're chronic, all promises and plans come with a disclaimer: "Promises will be kept, plans will be carried out, chronic condition permitting."
See you tomorrow. Life permitting.
So there I was, proclaiming myself depressed and holding out my hand for Prozac or some similar instant relief pill, ready to medicate myself back to normalcy. I left the office with my prescription, but only after leaving a bucket of blood over at the lab.
"Take the pills and rest as much as you can for the next few weeks. Stay in bed most of the time," the good doctor said. Yeah, right.... stay in bed in November. But as it turned out, staying in bed was about all I felt like doing. I took my little pills and I slept. As the month wore on, the depression I was so sure I was e xperiencing lifted, and the fatigue deepened. And a nagging sort of fingernails-on-a-chalkboard feeling had settled into my shoulders and scalp.
"You may need another antidepressant," my sister counselled. "Sometimes it takes months to find the right one for you."
Early in December I walked back into the good doctor's office and informed him that I was no longer depressed, matter of fact my mood was downright jolly. But my body was sicker than ever.
"Well, that's because you have Lupus," he said. He smiled. We laughed a bit. Woo hoo, hehe. Lupus. What a relief! The diagnosis -- which changed slightly in later months -- explained a lot, including the horrible itching in my lower back and arms. Not to worry, he said, take this little pill and this little pill and you'll be fine. I'll send you to the rheumatologist and he'll tell you what you need to do and everything will be fine."
It all seemed so simple. When I told my husband over lunch that I had Lupus, he was relieved. I was relieved. The dark cloud of the past few months lifted. We had a name for the reason I was falling asleep every time I sat down. I had pills to take, a specialist to see. Life would be normal again in just a few weeks.
I won't bore you with the details -- yet (smirk). Just know this: that was December 2002. Today is August 23, 2007 and the only way I can call my life "normal" is because the definition of that word has changed in my household.
So I'm chronic. And if you've read this far you may be chronic too. Maybe we can ride this beast together for a little while. Check back here for more posts. I'll try to write every day or so. But you guys -- you chronic lifers -- know how it is. When you're chronic, all promises and plans come with a disclaimer: "Promises will be kept, plans will be carried out, chronic condition permitting."
See you tomorrow. Life permitting.
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