Janae Beau White Eagle was an incredible woman. She died just four days short of her 66th birthday. Born on the day Japan attacked Pearl Harbor, Janae slipped out of this life quietly in the hours between one day and the next. No one was there with her. A nurse checked and Janae was there, and when she checked again my friend had gone.
Janae lived long enough to visit with her beautiful daughter and hold her precious grandbaby. Janae loved that baby deeply and dearly, even before he was born. She had time to be initiated into another level of her religion. She lived long enough to welcome death when it came.
Janae was a remarkable woman, self-made in many ways. She was an incredible artist and in recent years had earned her living as a professional quilter. Janae's quilting was incredible. The lucky quilters who have her stitches on top of their quilts own nothing less than a work of art.
At the end, we who loved Janae did our best to surround her with love, even if we couldn't be there all the time. Even though she seemed to be drifting, already halfway out of our world, I know she understood that we were there. I read from her holy book and sang a prayer for her that is important in her faith. We all told her we loved her.
Mostly we held her hand or stroked her hair or just sat beside the window in her room, watching the days grow shorter and darker.
And then she was gone.
Some of us gathered and toasted her memory with hot cider and cookies. Two or three three of us were hard about the work of emptying her house. We fulfilled the wishes of her will as best we could. And still had a house filled with things.
The sorting and boxing and labeling and such began before Janae died. It will be done for good Wednesday when Goodwill comes to take away the remaining boxes and bags. I don't think it will be sad. I have said my goodbyes. It hasn't been easy, spending hours at a time in her house, touching her things, listening for her laughter. But I have talked to her, I have sat in her house and cried until my eyes ached. I think now I can bear to let go of the last of her things.
Janae believed that we are all born over and over until we get it right. And that we share each lifetime with the same people, but in different positions. Maybe next time your husband will be your sister or you will be your aunt's mother. In many conversations, Janae and I came to agree that undoubtedly we had known each other in previous lives. We only shared this life for a year, but it felt like we had been friends forever.
I hope Janae was right. I told her that. During those last days I told her that, with her getting there sooner than me, she has to put the word in with the big Boss. No more of this stuff of finding my friend and then losing her so soon. This has been too hard to bear.
Next time, in the next lifetime that Janae and I get to share, we have to meet sooner.
Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Monday, December 17, 2007
Sunday, November 11, 2007
Internal Rumors
When I finally felt well enough to wander downstairs to my sewing
room this week, I discovered that while I was sick my sewing machine had
developed a glitch. After two days of trying to resolve the problem I
gave up and toted the thing to the local sewing machine
dealership/repair shop.
The proprietor of the shop is not known for
her people skills. While I explained the problem she stood well inside
my personal space comfort zone, looking straight into my eyes while I
talked. She looked briefly to my machine and when she looked back at me I thought I saw the eyes of my fourth grade teacher Mrs. Humber, who has been the subject
of one or two complete therapy sessions.
'Is your machine threaded now?' she asked, a bit on the shrill
side.Yes, I told her.
'Did you know that the thread isn't in the tension hook?' Still
staring at me, nearly nose to nose.
I told her I knew quite well that the thread was out of the tension hook -- a total lie. But I was channeling my own fourth-grade self and feeling vulnerable.
'Well have you forgotten how to thread your sewing machine?' The question
was so rude and so out of line and her eyes were so unblinking and I
said 'Oh come on' the way people do now.
But I blinked. And she didn't.
In that horrible instant standing there in the gaze of a
woman who owns a small sewing machine dealership in a small town in an
underpopulated state, I was judged and found stupid. We both knew in that instant that maybe, just maybe, I had forgotten how to thread my machine.
I forget a lot of things. It's not the 'now where did I put the keys' sort of thing. My forgetting is a bit more functional. You see, the autoimmune disease that catapulted me into the ranks of the chronic has affected my cognitive abilities. I know this for a fact because in order to qualify for Social Security Disability benefits I had to take a psych test. The man who gave me the test stopped me at one
point when I was desperately trying to remember if the cocker spaniel
dog with the Frisbee in its mouth was sitting with Grandpa earlier or
if it was in the car with Bobby. The doctor patted my hand, handed me
a cup of cold water and suggested I take a break. When I came back
from the break he had put away the testing materials and ushered me to
the door telling me he didn't think I needed to worry, that my
application should go through with no problems.
Now, on one hand, that's what I wanted. On the other hand, I did not
want to be told that I was a card short of a deck. Or maybe two.
Because I have good friends who are chronic, I know that a lot of us face the two-edged sword of being incompetent enough to qualify for disability but being so incompetent that you forget to take your meds. And go to appointments. And to pay bills.
The list goes on, but it becomes more personal and embarrassing.
People who don't know me well enough to know that I have this disease tend to write me off as a bit dotty or maybe even slow. That hurts. If I try to sound intelligent and on top of things, in the same place as everybody else, it just gets worse. I forget words at approximately the same rate as i try to think of them. Pretty disasterous if you're trying for witty repartee.
Learning to live with pain and loss of career and freedom has been hard, but nowhere near as hard as learning to bury my pride and live with the constant little 'slings and arrows' of unspoken insult.
I intend to ask my husband to collect my sewing machine without me. I'm thinking the propriator might be right. Maybe I forgot to push the thread through the tension hook. Or maybe my machine has a real problem. Either way I don't intend to submit myself to the judgmental glare of Mrs. Humber ever again.
And that's one promise to myself I don't think I'll forget.
Peace
room this week, I discovered that while I was sick my sewing machine had
developed a glitch. After two days of trying to resolve the problem I
gave up and toted the thing to the local sewing machine
dealership/repair shop.
The proprietor of the shop is not known for
her people skills. While I explained the problem she stood well inside
my personal space comfort zone, looking straight into my eyes while I
talked. She looked briefly to my machine and when she looked back at me I thought I saw the eyes of my fourth grade teacher Mrs. Humber, who has been the subject
of one or two complete therapy sessions.
'Is your machine threaded now?' she asked, a bit on the shrill
side.Yes, I told her.
'Did you know that the thread isn't in the tension hook?' Still
staring at me, nearly nose to nose.
I told her I knew quite well that the thread was out of the tension hook -- a total lie. But I was channeling my own fourth-grade self and feeling vulnerable.
'Well have you forgotten how to thread your sewing machine?' The question
was so rude and so out of line and her eyes were so unblinking and I
said 'Oh come on' the way people do now.
But I blinked. And she didn't.
In that horrible instant standing there in the gaze of a
woman who owns a small sewing machine dealership in a small town in an
underpopulated state, I was judged and found stupid. We both knew in that instant that maybe, just maybe, I had forgotten how to thread my machine.
I forget a lot of things. It's not the 'now where did I put the keys' sort of thing. My forgetting is a bit more functional. You see, the autoimmune disease that catapulted me into the ranks of the chronic has affected my cognitive abilities. I know this for a fact because in order to qualify for Social Security Disability benefits I had to take a psych test. The man who gave me the test stopped me at one
point when I was desperately trying to remember if the cocker spaniel
dog with the Frisbee in its mouth was sitting with Grandpa earlier or
if it was in the car with Bobby. The doctor patted my hand, handed me
a cup of cold water and suggested I take a break. When I came back
from the break he had put away the testing materials and ushered me to
the door telling me he didn't think I needed to worry, that my
application should go through with no problems.
Now, on one hand, that's what I wanted. On the other hand, I did not
want to be told that I was a card short of a deck. Or maybe two.
Because I have good friends who are chronic, I know that a lot of us face the two-edged sword of being incompetent enough to qualify for disability but being so incompetent that you forget to take your meds. And go to appointments. And to pay bills.
The list goes on, but it becomes more personal and embarrassing.
People who don't know me well enough to know that I have this disease tend to write me off as a bit dotty or maybe even slow. That hurts. If I try to sound intelligent and on top of things, in the same place as everybody else, it just gets worse. I forget words at approximately the same rate as i try to think of them. Pretty disasterous if you're trying for witty repartee.
Learning to live with pain and loss of career and freedom has been hard, but nowhere near as hard as learning to bury my pride and live with the constant little 'slings and arrows' of unspoken insult.
I intend to ask my husband to collect my sewing machine without me. I'm thinking the propriator might be right. Maybe I forgot to push the thread through the tension hook. Or maybe my machine has a real problem. Either way I don't intend to submit myself to the judgmental glare of Mrs. Humber ever again.
And that's one promise to myself I don't think I'll forget.
Peace
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, 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
Saturday, September 15, 2007
What Time is It?
I never have enough time.
As a result, I almost never finish anything.
I took up quilting a couple years ago because 'being chronic' seemed like a lousy hobby. I took up quilting because it gave me the perfect cover for my true love, which is buying fabric. My vision of heaven has nothing to do with streets of gold and everything to do with row upon row of gorgeous bolts of fabric -- all available for free, of course.
I'm great at buying fabric. My quilting, however, leaves a bit to be desired. I struggle to make points match. My squares are wonky and my seams sometimes look like the trajectory of a car drven by a drunk celebrity. And I'm slow. Once a month I go to quilty meetings where lots of women and one man get together to show off our work. Each month, the same women stand up and show their work, all so perfect, all so finished. Each month I go home and look at my projects, lined up along the shelves like neglected urchins. I stand there in my sewing room wanting to take up the scissors and thread and wale away until i have finished a quilt or wall hanging and reached the enchanted land of embellilshments. But usually I just go to bed.
That, dear reader, is why I have so little to show in the way of finished work: I sleep a lot. Fatigue is my constant adversary. My kind of chronic has no reserves. If I do too much and get too tired, bad things happen. You don't want to know the details, trust me. So I try to get plenty of sleep.
I have to sleep 9 hours at night, and tend more toward 10. And I take a nap every afternoon. Always an hour, sometimes two and if I've pushed a bit in the morning, I might be out for three. And, if I was foolish yesterday and spent time in the sun, walked around town with a visiting friend, drove too much, etc ... then today I'm going to pay. I will wake up late, be exhausted by the effort of eating breakfast and need a morning nap. I will wake up shortly before noon, be exhausted by the effort of eating lunch and go back to sleep. Before dinner I'll wake up long enough to load the dishwasher and figure out something for supper that requires absolutely no energy and then I sleep until my husband comes home from work. After supper, of course, I'm ready for an early bedtime.
You can see how that would make it hard to get much done.
My dear friend J recently stopped being chronic. She went to her doctor one day, expecting a change in chemotherapy, and came home with a referral to Hospice. Christmas may not come this year.
They say that those who are about to die find they are living much more vividly. They take chances and do things they've always put off.
Well, J isn't jumping out of airplanes or climbing mountains. Instead, she's selling her personal possessions so she will have enough money to eat when she can't work anymore. Yeah, it sucks the big one. Life is so unfair.
In addition to being my friend, J is a quilter. She actually has made a living quilting the quilts that other people put together. When I talked to her yesterday, she was trying to figure what she can do in the time she has left. Some projects she just has to finish: a velvet quilt for a friend who took her in at a tough time, a wall quilt for her daughter, a stuffed teddy bear and matching bunny rabbit for a grandchild she may never see. The rest of her 'stash' of fabric will be sold to quilters who are gambling they have enough time to use it.
They say people who know they are dying have more wisdom and insight into life's hard questions. So I complained to J about my lack of time, how I sleep too much and just don't have time to finish all the projects I have started. I asked her what to do, how to manage, what is the answer to my frustration? My friend shook her head, took a quick look at the stacks of fabric she will be selling in the coming weeks and gave me the full force of all her insight and wisdom.
'Work faster,' she said.
**********************
I realized today that at the end of my last post, instead of signing off 'Peace and Blessings' I had written 'Peach and Blessings.' It may have been a simple typo, or may have been some sort of associative slip caused by the sweet, juicy, bursting with flavor peach I was eating while I wrote. Either way, I sort of like the whole idea. After all, what could be more of a blessing than a perfect piece of summer fruit? On that note, I will leave you until next time with this benediction:
Peaches and Blessings and All Good Things!
Matriarch
As a result, I almost never finish anything.
I took up quilting a couple years ago because 'being chronic' seemed like a lousy hobby. I took up quilting because it gave me the perfect cover for my true love, which is buying fabric. My vision of heaven has nothing to do with streets of gold and everything to do with row upon row of gorgeous bolts of fabric -- all available for free, of course.
I'm great at buying fabric. My quilting, however, leaves a bit to be desired. I struggle to make points match. My squares are wonky and my seams sometimes look like the trajectory of a car drven by a drunk celebrity. And I'm slow. Once a month I go to quilty meetings where lots of women and one man get together to show off our work. Each month, the same women stand up and show their work, all so perfect, all so finished. Each month I go home and look at my projects, lined up along the shelves like neglected urchins. I stand there in my sewing room wanting to take up the scissors and thread and wale away until i have finished a quilt or wall hanging and reached the enchanted land of embellilshments. But usually I just go to bed.
That, dear reader, is why I have so little to show in the way of finished work: I sleep a lot. Fatigue is my constant adversary. My kind of chronic has no reserves. If I do too much and get too tired, bad things happen. You don't want to know the details, trust me. So I try to get plenty of sleep.
I have to sleep 9 hours at night, and tend more toward 10. And I take a nap every afternoon. Always an hour, sometimes two and if I've pushed a bit in the morning, I might be out for three. And, if I was foolish yesterday and spent time in the sun, walked around town with a visiting friend, drove too much, etc ... then today I'm going to pay. I will wake up late, be exhausted by the effort of eating breakfast and need a morning nap. I will wake up shortly before noon, be exhausted by the effort of eating lunch and go back to sleep. Before dinner I'll wake up long enough to load the dishwasher and figure out something for supper that requires absolutely no energy and then I sleep until my husband comes home from work. After supper, of course, I'm ready for an early bedtime.
You can see how that would make it hard to get much done.
My dear friend J recently stopped being chronic. She went to her doctor one day, expecting a change in chemotherapy, and came home with a referral to Hospice. Christmas may not come this year.
They say that those who are about to die find they are living much more vividly. They take chances and do things they've always put off.
Well, J isn't jumping out of airplanes or climbing mountains. Instead, she's selling her personal possessions so she will have enough money to eat when she can't work anymore. Yeah, it sucks the big one. Life is so unfair.
In addition to being my friend, J is a quilter. She actually has made a living quilting the quilts that other people put together. When I talked to her yesterday, she was trying to figure what she can do in the time she has left. Some projects she just has to finish: a velvet quilt for a friend who took her in at a tough time, a wall quilt for her daughter, a stuffed teddy bear and matching bunny rabbit for a grandchild she may never see. The rest of her 'stash' of fabric will be sold to quilters who are gambling they have enough time to use it.
They say people who know they are dying have more wisdom and insight into life's hard questions. So I complained to J about my lack of time, how I sleep too much and just don't have time to finish all the projects I have started. I asked her what to do, how to manage, what is the answer to my frustration? My friend shook her head, took a quick look at the stacks of fabric she will be selling in the coming weeks and gave me the full force of all her insight and wisdom.
'Work faster,' she said.
**********************
I realized today that at the end of my last post, instead of signing off 'Peace and Blessings' I had written 'Peach and Blessings.' It may have been a simple typo, or may have been some sort of associative slip caused by the sweet, juicy, bursting with flavor peach I was eating while I wrote. Either way, I sort of like the whole idea. After all, what could be more of a blessing than a perfect piece of summer fruit? On that note, I will leave you until next time with this benediction:
Peaches and Blessings and All Good Things!
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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