Spring was a long time coming this year. Even as the snow melted and the robins came back the days still seemed too short, too dark.
But sooner or later every winter must end, no matter how deep or how dark, and even I can tell that the sunlight is brighter and lasts longer than it did in December. Staying stuck in the dark days of winter would require denial of the tulips rushing out of the ground and the fat, happy buds on the big old Forsythia.
Life is like that. Seasons come and go without care for personal metaphors. The garden dwellers that survived the winter don't spend a moment mourning their neighbors that couldn't make it until spring. Growth just goes on, filling the empty spaces until soon there is only green abandon.
So I'm awake and thankful and going about the business of every day. Still, something is different inside me. I am keenly aware of the brevity of life and the lack of promises we get from the universe. I've been careful not to push too hard or risk too much. Maybe that's been necessary, but maybe it's been a mistake.
This summer I'm going to risk. Big.
I haven't indulged my love of education since I found out just what chronic means. It's too iffy. I might pay my tuition and then never make a single class. Or get halfway through and not be able to finish. And exhaustion inevitably leads to payback. The spirit may be willing but the disease will take its toll.
Today, Spring is strong and I feel the same. I've made a decision to jump off a high bridge into a tank of icy water filled with man-eating sharks. Well -- really I've decided to take a class.
In August an internationally-known quilt artist will be teaching a seminar class for a week, just about an hour from where I live. I love her work. I drool to think of what she could teach me. But it would mean a hefty investment of funds, a week away from home, eight-hour class days plus evenings spent doing "homework". My first assumption was that I could never do it. Never. Nope. Not for me anymore. I'm chronic and helpless and have no options.
And have no patience with that kind of attitude from myself. I really want that class with Rosalie Dace, and I'm going to make it. I've talked to the good Dr. B and to my husband (who probably will qualify for sainthood before this whole thing is over) and to my friends who are going to be in the class. Now, I have something I haven't had for a long time; I have hope and I have a plan.
Friday before the class starts on Monday (this is in August) I am going to let my favorite nurse shoot my backside with a lot of steroids. I don't pitch for the major leagues so it shouldn't be a problem. I'm going to fill a prescription for more steroids and for something that will give me energy -- just for a week. And I'm going to go. Yes, I'll be pumped up like crazy and may not sleep that week. Oh, wait, I forgot -- I'm going to have a week's worth of sleep aids. And my buddies say that a rest period can be worked into the day.
I may fall apart half-way through and have to leave. Well, that's more of the class than I would have had before. And without doubt I will pay dearly in the week or two after my medicated state wears off. I know this is only possible because of the wonders of chemistry. So what. I'm going to do this thing. Yes, the cost is high. But I have the chance to learn from an artist I greatly respect. A chance to spend a week with women whose company I enjoy and who will be sharing the opportunity to grow in our art together. A chance to reach farther than I've reached in so very long.
Mostly, I have a chance to step outside my chronic life and taste life the way it used to be. How could I resist?
Showing posts with label chronic disease. Show all posts
Showing posts with label chronic disease. Show all posts
Wednesday, March 12, 2008
Saturday, October 13, 2007
Fear
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.
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.
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
Wednesday, September 12, 2007
The Road Less Travelled
It's remarkable how many opportunities we have during a lifetime to lose friends.
Really, if you consider, they are all crossroads. Maybe you went to one high school and your friend to another. Or you went off to college in another state while your high school friends stayed home. Regardless of all the promises to be "Best Friends Forever", you lost touch quickly and it was all for the better. You entered the world of work and bonded quickly with the people you found there. But on the day you got married and your best Buds stayed single, something happened. You tried to stay friends, but somehow it got harder and harder to get together and you became closer and closer to other married people. When the first baby came along you crossed another road. Good friends suddenly looked at you as if they were seeing a maniac. And all just because you couldn't stop gushing about poop and spit-up and breast milk accidents. Your friends were other parents from then on.
Then came the day you got sick. You probably were sick for a long time before anybody, yourself included, noticed. We tend to operate like that. But once it was undeniable, once you had a label, it all happened so fast.....
At first, there was an outpouring of love and caring. Friends sent flowers. Acquaintances brought over pots of soup and casseroles. "Let me know if you need anything," they said. And they meant it. But you kept on cancelling get togethers. You became the constant no-show. And when you did make it, there were all those other problems:
You couldn't stand the sunlight, couldn't eat that food anymore, couldn't walk so long or stay up late. And more mind-boggling, maybe you just didn't have money any more. Two incomes had become one income and one constant source of medical bills. You were no longer able to drop into Starbucks for a $4 cup of coffee every day. Even if you felt like it.
Friends had come and gone before, but this one hurt. You really did need them.
Some of you even watched your spouse walk away.
If you were lucky, there was one good friend who stuck it out. The loneliness felt like another symptom, one that meds couldn't fix.
How do you make friends when you can't even get out of bed some days? How can you feel attractive and interesting when you hair is coming out in clumps and all you can talk about is the latest med and its affect on your body. Where are those people who will fold you into their arms and close ranks around you, loving and giving you encouragement and care?
Well, many of them are online, in special communities devoted to the particular illness or condition they share with you. I got lucky. When I needed friends the most, I found compassion, understanding and friendship online in an online Lupus support group.
Some of your friends-in-waiting are in support groups in your community. Check newspaper listings, ask your physician, call the nearest hospital. They can put you in touch. There may even be mentors for your condition, people who have been where you are and can help you through it.
When you become chronic, your life will change. It is, after all, another crossroads. You are taking the road less travelled, not by choice but by chance. But if you can look around you and reach out, just a bit even, then you will find that others are also traveling that same road. They will see you as you are now rather than as you were. They will learn to love you right now, in this moment.
Don't be afraid. Reach out, even if it's just by phone or computer. We need friends and companions on the road with us. They make the journey worthwhile.
The sites where I found friendship and compassion were a Lupus organization
and a Sjogren's Syndrome site.
Peach and blessings,
Matriarch
I have included two links in this post for supportive online communities. If you know of others, please send them and I will include them in future posts.
Really, if you consider, they are all crossroads. Maybe you went to one high school and your friend to another. Or you went off to college in another state while your high school friends stayed home. Regardless of all the promises to be "Best Friends Forever", you lost touch quickly and it was all for the better. You entered the world of work and bonded quickly with the people you found there. But on the day you got married and your best Buds stayed single, something happened. You tried to stay friends, but somehow it got harder and harder to get together and you became closer and closer to other married people. When the first baby came along you crossed another road. Good friends suddenly looked at you as if they were seeing a maniac. And all just because you couldn't stop gushing about poop and spit-up and breast milk accidents. Your friends were other parents from then on.
Then came the day you got sick. You probably were sick for a long time before anybody, yourself included, noticed. We tend to operate like that. But once it was undeniable, once you had a label, it all happened so fast.....
At first, there was an outpouring of love and caring. Friends sent flowers. Acquaintances brought over pots of soup and casseroles. "Let me know if you need anything," they said. And they meant it. But you kept on cancelling get togethers. You became the constant no-show. And when you did make it, there were all those other problems:
You couldn't stand the sunlight, couldn't eat that food anymore, couldn't walk so long or stay up late. And more mind-boggling, maybe you just didn't have money any more. Two incomes had become one income and one constant source of medical bills. You were no longer able to drop into Starbucks for a $4 cup of coffee every day. Even if you felt like it.
Friends had come and gone before, but this one hurt. You really did need them.
Some of you even watched your spouse walk away.
If you were lucky, there was one good friend who stuck it out. The loneliness felt like another symptom, one that meds couldn't fix.
How do you make friends when you can't even get out of bed some days? How can you feel attractive and interesting when you hair is coming out in clumps and all you can talk about is the latest med and its affect on your body. Where are those people who will fold you into their arms and close ranks around you, loving and giving you encouragement and care?
Well, many of them are online, in special communities devoted to the particular illness or condition they share with you. I got lucky. When I needed friends the most, I found compassion, understanding and friendship online in an online Lupus support group.
Some of your friends-in-waiting are in support groups in your community. Check newspaper listings, ask your physician, call the nearest hospital. They can put you in touch. There may even be mentors for your condition, people who have been where you are and can help you through it.
When you become chronic, your life will change. It is, after all, another crossroads. You are taking the road less travelled, not by choice but by chance. But if you can look around you and reach out, just a bit even, then you will find that others are also traveling that same road. They will see you as you are now rather than as you were. They will learn to love you right now, in this moment.
Don't be afraid. Reach out, even if it's just by phone or computer. We need friends and companions on the road with us. They make the journey worthwhile.
The sites where I found friendship and compassion were a Lupus organization
and a Sjogren's Syndrome site.
Peach and blessings,
Matriarch
I have included two links in this post for supportive online communities. If you know of others, please send them and I will include them in future posts.
Monday, September 3, 2007
Living Medicated
Don't you just love meds?
Those little (and sometimes big) pills, patches, cocktails and injections that get us through this chronic life take up a lot of space both in the medicine cabinet and in the shaky and undependable hard drive known as human memory.
I know. At one time, I had 13 prescriptions. (I'm down to 6 now.) I took at least one tablet from each Rx every day. Most of them I took several times. And they were not all on the same schedule. Some I took as needed.
It was enough to make my head explode. And remember, one of my symptoms is what we chronics politely refer to as "brain fog."
I tried lists, charts, little pill boxes, big pill boxes. I tried putting the pills in some reasonable order on the shelf. Now that was a laugh. I've never managed to maintain anything in a "reasonable order" in my life. I can't imagine why I thought I'd be more successful with little white and brown bottles of pills.
Mornings were particularly miserable. Some of my meds were only to be taken on an empty stomach. Others had to be taken with food. Both kinds said "take first thing in the morning." Add to that the facts that: A) I've never been a morning person, and B)all my pain meds have worn off during the night. Woo Boy. I am one finely tuned, high functioning piece of precision machinery in the morning.
Oh yeah, and my hands shake sometimes. Heh. Yeah, you should have been there watching me (sans glasses because I never, ever remember where I took the blasted things off the night before) squint at bottles, pick up and put down, open and close, shake out one and then put it back, fling another one right across the bathroom, pick up the spilled pills and finally do the only smart thing to do. Call my husband.
'Did I take my ______ already today?' I'd ask. He didn't usually know, but because I married a man who creates organizing systems in his sleep, he could usually talk me through the process and help me bring order to chaos. For a little while.
Of course the whole thing is set up for disaster. There have been times when I've skipped a dose. There have been times when I've doubled a dose.
I can't tell you how many times in the past four years I've stood in front of the mirror in the bathroom, looking at the little pill in my palm and muttering 'I think I didn't already take this. But I sort of remember the bottle. Do I remember last night or did I take it early when I got up to let the dogs out in the yard? Did I take it? If I did, does that mean I took the other one too? OK, wait, go back to the beginning......Now, I think I didn't already take this.....'
One friend uses pill boxes to take the mystery and misery out of dosing times. But the little open spaces send me into fritters.
Is it empty because I already took the dose or is it empty because I forgot to put one in this spot when I filled the box? Or maybe it's empty because when I dropped the box and pills went all over the floor, I put the wrong ones back in this space. And, what's that little gray thing down there against the baseboard?????
Fortunately my sons are old enough that I don't have to worry about them picking up a stray pill and swallowing it. Unfortunately, they both inherited a sick sense of humor from somewhere and they find my 'antics' completely amusing. That's OK, I guess. They say laughter is the best medicine.
Just please, please don't put it in a bottle. I don't think I could handle one more!
Those little (and sometimes big) pills, patches, cocktails and injections that get us through this chronic life take up a lot of space both in the medicine cabinet and in the shaky and undependable hard drive known as human memory.
I know. At one time, I had 13 prescriptions. (I'm down to 6 now.) I took at least one tablet from each Rx every day. Most of them I took several times. And they were not all on the same schedule. Some I took as needed.
Take this twice a day after eating
Take one pill three times a day for pain
Take one pill four times a day
Take one pill after the evening meal
Take one pill several hours before going to bed
Take one pill each week, at least 30 minutes before eating or drinking anything else
Take one pill twice a day at times when drowsiness can be tolerated
Inhale one dose in case of migraine
Use one if vomiting does not stop after a reasonable time
Take one or two pills every four to six hours for breakthrough pain, no more often than once a day (huh????)
Take one or two a day, or one every other day, depending on doctor's directions
It was enough to make my head explode. And remember, one of my symptoms is what we chronics politely refer to as "brain fog."
I tried lists, charts, little pill boxes, big pill boxes. I tried putting the pills in some reasonable order on the shelf. Now that was a laugh. I've never managed to maintain anything in a "reasonable order" in my life. I can't imagine why I thought I'd be more successful with little white and brown bottles of pills.
Mornings were particularly miserable. Some of my meds were only to be taken on an empty stomach. Others had to be taken with food. Both kinds said "take first thing in the morning." Add to that the facts that: A) I've never been a morning person, and B)all my pain meds have worn off during the night. Woo Boy. I am one finely tuned, high functioning piece of precision machinery in the morning.
Oh yeah, and my hands shake sometimes. Heh. Yeah, you should have been there watching me (sans glasses because I never, ever remember where I took the blasted things off the night before) squint at bottles, pick up and put down, open and close, shake out one and then put it back, fling another one right across the bathroom, pick up the spilled pills and finally do the only smart thing to do. Call my husband.
'Did I take my ______ already today?' I'd ask. He didn't usually know, but because I married a man who creates organizing systems in his sleep, he could usually talk me through the process and help me bring order to chaos. For a little while.
Of course the whole thing is set up for disaster. There have been times when I've skipped a dose. There have been times when I've doubled a dose.
I can't tell you how many times in the past four years I've stood in front of the mirror in the bathroom, looking at the little pill in my palm and muttering 'I think I didn't already take this. But I sort of remember the bottle. Do I remember last night or did I take it early when I got up to let the dogs out in the yard? Did I take it? If I did, does that mean I took the other one too? OK, wait, go back to the beginning......Now, I think I didn't already take this.....'
One friend uses pill boxes to take the mystery and misery out of dosing times. But the little open spaces send me into fritters.
Is it empty because I already took the dose or is it empty because I forgot to put one in this spot when I filled the box? Or maybe it's empty because when I dropped the box and pills went all over the floor, I put the wrong ones back in this space. And, what's that little gray thing down there against the baseboard?????
Fortunately my sons are old enough that I don't have to worry about them picking up a stray pill and swallowing it. Unfortunately, they both inherited a sick sense of humor from somewhere and they find my 'antics' completely amusing. That's OK, I guess. They say laughter is the best medicine.
Just please, please don't put it in a bottle. I don't think I could handle one more!
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.
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