I expect good days, bad days and good weeks and bad weeks, but two and a half weeks of non-stop gripping pain is intolerable. The right side of my neck is twice as thick as my left. I can feel the tightened muscles pulling on my pectorals, up under my jawline, and the pain wrapping around my head and over the top of my shoulder. Each time I move my chin downward even a fraction of an inch, it feels as though a knife is being plunged into my back by my shoulder blade. The nerves inside my arm alternate between a constant deep ache and electrical surges.
Last Tuesday morning, the pain had lessened and I was so excited, you'd think I'd won the lottery. That afternoon, after leaving a meeting downtown, I was driving home and out of nowhere came the knife blade in the shoulder blades. All I could think was "where the hell did that come from?"
By Wednesday - exactly two weeks from the onset of this extreme episode - I called my orthopaedic surgeon's office and left a message on his nurse's voicemail:
"I need help. I am in so much pain I can't stand it and this has been going on for two weeks. I've tried everything I can think of - anti-inflammatories, vicodin, ice, heat, stretching...I've even gone to a massage therapist. I don't know what else to do. Help."
As I said those words, tears rolled down my face. "Will you look at this?" I said to a co-worker. "Is this not the stupidest thing you've ever seen? It's not that the pain is bad enough to cry about; it's that is won't stop." She nodded understandingly because she has a brother who suffers from chronic pain. "I know," she said. "It's the frustration." And it is.
The non- stop pain just wears you down. It makes you want to do whatever it takes to make it stop. You still muddle through whatever you have to do - not very effectively, but adequately - until you can retreat. Then it's anything and everything you can do to make it stop, including taking enough pain killers to put yourself into a state of semi-consciousness. At least you'll get some peace for a little while.
Now, that compounds another issue: what about the things I need to do and want to do? What about the chores and the bills and - heaven forbid - something fun? Right now, I will force myself to deal with bills but beyond that...I don't care.
Monday, September 7, 2009
Sunday, August 30, 2009
Good Days, Bad Days; Good Weeks, Bad Weeks
Pain seldom stays consistent for any extended period of time. It seems to cycle in days or weeks or, if unattended to - months.
I have been in a very down cycle now for 11 straight days. I've done everything I know to do to break the cycle. I've used heat and I've used ice. I've taken anti-inflammatorys, muscle relaxers, and pain killers. I've stretched until I've had electrical shocks go down my arm and I've laid quietly in a non-irritating position. I've used topical heat rubs and layered on the patches. I wore the TENS (transcutaneous electro-neural stimualtion, I think) unit off and on for twowhole days. I even missed one day of work trying to calm the pain. And - as a last resort - I went to a massage therapist.
The massage therapist helped a little, at least for the evening after I had it. The ice seemed to calm the spasms some. But all in all, it's still here.
The problem with enduring pain is not just the pain. It's that day after day after day of it just wears you down. I find myself in tears not because the pain is bad enough to make me cry but because it just won't stop.
I want it to stop. Or at least back down for awhile.
I have been in a very down cycle now for 11 straight days. I've done everything I know to do to break the cycle. I've used heat and I've used ice. I've taken anti-inflammatorys, muscle relaxers, and pain killers. I've stretched until I've had electrical shocks go down my arm and I've laid quietly in a non-irritating position. I've used topical heat rubs and layered on the patches. I wore the TENS (transcutaneous electro-neural stimualtion, I think) unit off and on for twowhole days. I even missed one day of work trying to calm the pain. And - as a last resort - I went to a massage therapist.
The massage therapist helped a little, at least for the evening after I had it. The ice seemed to calm the spasms some. But all in all, it's still here.
The problem with enduring pain is not just the pain. It's that day after day after day of it just wears you down. I find myself in tears not because the pain is bad enough to make me cry but because it just won't stop.
I want it to stop. Or at least back down for awhile.
Wednesday, August 26, 2009
Unfortunate Pain Relief
Sometimes, on days where the pain is not over the top, something can happen in the world that makes your brain focus on one sensation more than the other. Grief and sadness over a collective tragedy can make your brain shut down - or at least subdue - the pain sensations.
9-11 did that for me. Michael Jackson's untimely death may have affected others that way. Today Ted Kennedy's death affected me that way.
I have been in a downward spiral of unceasing pain for over a week. Every day at work has been a struggle. But today when I started my computer, there it was on CNN: Ted Kennedy had died. I was immediately struck with sadness but not yet enough to subdue the pain.
Then this evening, I turned on CNN, knowing that the evening would be devoted to his memory. CNN aired the HBO documentary "Teddy. In His Own Words." I watched, reliving my life from JFK's election and assassination (I was in kindergarten but remember vividly), through Bobby Kennedy's death, through the last few decades of Teddy Kennedy's senate tenure.
As I watched and absorbed the tragic lives of the Kennedy family, and their enduring commitment to service and speaking out for those less fortunate, tears rolled down my face. And I realized that while my pain was still there, it was not the prominent sensation.
It also made me realize that if I could find the time and energy and strength to work for the welfare for others less fortunate than I am, I could possibly cope with my pain while doing good for others. IF. IF. IF. If I didn't have to spend my day earning a living, I might HAVE the time, energy, and strength to devote to others.
But like so many others, getting through a day takes everything I have. But I won't give up hope. Someday, somehow there may come a procedure, a medicine, a miracle to help me get there.
9-11 did that for me. Michael Jackson's untimely death may have affected others that way. Today Ted Kennedy's death affected me that way.
I have been in a downward spiral of unceasing pain for over a week. Every day at work has been a struggle. But today when I started my computer, there it was on CNN: Ted Kennedy had died. I was immediately struck with sadness but not yet enough to subdue the pain.
Then this evening, I turned on CNN, knowing that the evening would be devoted to his memory. CNN aired the HBO documentary "Teddy. In His Own Words." I watched, reliving my life from JFK's election and assassination (I was in kindergarten but remember vividly), through Bobby Kennedy's death, through the last few decades of Teddy Kennedy's senate tenure.
As I watched and absorbed the tragic lives of the Kennedy family, and their enduring commitment to service and speaking out for those less fortunate, tears rolled down my face. And I realized that while my pain was still there, it was not the prominent sensation.
It also made me realize that if I could find the time and energy and strength to work for the welfare for others less fortunate than I am, I could possibly cope with my pain while doing good for others. IF. IF. IF. If I didn't have to spend my day earning a living, I might HAVE the time, energy, and strength to devote to others.
But like so many others, getting through a day takes everything I have. But I won't give up hope. Someday, somehow there may come a procedure, a medicine, a miracle to help me get there.
Monday, August 24, 2009
A Write-Off Day
No one likes Mondays but we'd like to make the best of them, at the very least. Of course we go to work. But afterward there's a few hours to do SOMETHING of value. It may be a chore that we can get out the way to free up time next weekend like cutting the grass or doing some laundry....maybe you could pay some bills. Better still, you could come home and fix a nice dinner and spend some time with family or walk the dog. Anything...anything to make you fell like you did SOMETHING.
And then there's days like today. The kind of day where you start off in serious pain and no matter what you do or how hard you try to get out from under it, it just hangs on. And on. And on. And gets worse.
So, you come home grab something to drink (in my case, ice water) and the heat or ice packs, take some more drugs and plop in front of the TV until it's time to go to sleep. You give in and just hope that tomorrow will be a better day.
And oh - tell yourself you DID do something today: you went to work so you could get that paycheck.
Now - that's how my day went because I have no husband and my kids are in college. No one wants my attention and no one needs me to drive them to soccer or check their homework or expects me to have dinner ready. I'm fortunate in that sense and I know it. I know it because just a few years ago I had kids in school and in every activity imaginable and I had two jobs and no help. And before that I had a husband who never let me forget that I was not giving him the time and attention that he was entitled to. And yes, I was in ungodly pain back then too.
So I know there are thousands - no - hundreds of thousands of people out there who are on the brink of either a complete meltdown or physical breakdown every day...people who have this kind of pain and still have to function until the time their heads hit the pillows. People who either take way too many painkillers to cope or are screaming at everyone because they don't. And there's something terribly wrong with that. For those of you, I wish you a simple write-off day.
And then there's days like today. The kind of day where you start off in serious pain and no matter what you do or how hard you try to get out from under it, it just hangs on. And on. And on. And gets worse.
So, you come home grab something to drink (in my case, ice water) and the heat or ice packs, take some more drugs and plop in front of the TV until it's time to go to sleep. You give in and just hope that tomorrow will be a better day.
And oh - tell yourself you DID do something today: you went to work so you could get that paycheck.
Now - that's how my day went because I have no husband and my kids are in college. No one wants my attention and no one needs me to drive them to soccer or check their homework or expects me to have dinner ready. I'm fortunate in that sense and I know it. I know it because just a few years ago I had kids in school and in every activity imaginable and I had two jobs and no help. And before that I had a husband who never let me forget that I was not giving him the time and attention that he was entitled to. And yes, I was in ungodly pain back then too.
So I know there are thousands - no - hundreds of thousands of people out there who are on the brink of either a complete meltdown or physical breakdown every day...people who have this kind of pain and still have to function until the time their heads hit the pillows. People who either take way too many painkillers to cope or are screaming at everyone because they don't. And there's something terribly wrong with that. For those of you, I wish you a simple write-off day.
Sunday, August 23, 2009
The Advantages of Being a Chronic Pain Veteran
This morning did not start out well. I awoke in such pain that I was totally demoralized. However, since it was the last of my weekend and Saturday had also been a bust, I was determined that this day would not get away from me.
As a bona fide chronic pain veteran of over twenty years, I've learned a little about heading off debilitating pain and how to sometimes turn it around. Now, when I say that understand that means making it tolerable. I can never make it go away. In terms the doctors like to use, on a scale of 1 to 10, I've learned how I can sometimes turn a 9 day around to a 4 or 5 day - and that I can function with.
I took 3 naprosyn and a Vicodin within 30 minutes of getting up. Then I heated up two heat packs, wrapped them around my neck, and sat down with some coffee (incidentally, I have found that coffee - or the caffeine in it - seems to help with either the pain itself or the blood flow delievering the meds). I wrote a blog entry while I sat there and just waited for the heat and the meds to work. Slowly I started to feel better.
Then I started slowly - unloading the dishwasher, wiping off counters, and a few other light mundane tasks. I took a shower and put on some clean clothes. Then I attacked some other fundamentals on my "To Do" list like laundry, changing the sheets, sweeping and mopping the kitchen and cleaning the downstairs bath. Now this probably sounds pretty boring and basic, but to me they were major accomplishments.
The ultimate test for me, though, is doing something creative that I can feel good about. I got there. I had been working on a turquiose necklace and wanted to get it finished. I did. Before I go to bed, I'm going to fold the laundry and paint my toenails (another major challenge since it is very difficult for me to bend over to reach them).
I can't say that I've had a great weekend, but I can say that I accomplished something. Given my circumstances, I'll take it.
As a bona fide chronic pain veteran of over twenty years, I've learned a little about heading off debilitating pain and how to sometimes turn it around. Now, when I say that understand that means making it tolerable. I can never make it go away. In terms the doctors like to use, on a scale of 1 to 10, I've learned how I can sometimes turn a 9 day around to a 4 or 5 day - and that I can function with.
I took 3 naprosyn and a Vicodin within 30 minutes of getting up. Then I heated up two heat packs, wrapped them around my neck, and sat down with some coffee (incidentally, I have found that coffee - or the caffeine in it - seems to help with either the pain itself or the blood flow delievering the meds). I wrote a blog entry while I sat there and just waited for the heat and the meds to work. Slowly I started to feel better.
Then I started slowly - unloading the dishwasher, wiping off counters, and a few other light mundane tasks. I took a shower and put on some clean clothes. Then I attacked some other fundamentals on my "To Do" list like laundry, changing the sheets, sweeping and mopping the kitchen and cleaning the downstairs bath. Now this probably sounds pretty boring and basic, but to me they were major accomplishments.
The ultimate test for me, though, is doing something creative that I can feel good about. I got there. I had been working on a turquiose necklace and wanted to get it finished. I did. Before I go to bed, I'm going to fold the laundry and paint my toenails (another major challenge since it is very difficult for me to bend over to reach them).
I can't say that I've had a great weekend, but I can say that I accomplished something. Given my circumstances, I'll take it.
The Hiatus and My Purpose
I took a brief hiatus from writing for the last month or so. I was getting lots of comments from well-meaning but otherwise clueless individuals on what I should do with my blog to get more followers. And of course, to some extent, everyone hopes that their blog attracts visitors. That made me stop and second guess myself for several weeks.
My purpose was - and is - to reach out to others like me who deal with chronic pain every day of their lives. The truth is we're different. We hide it well when we have to. We try to avoid people when it's too horrific to hide. We find ways to mask it. And we try really, really hard to push ourselves beyond it so that we can sometimes still participate in those things that make life rewarding.
The truth is we're disabled; and it may be the worst kind of disability because there aren't always visual cues. Many of us don't use a cane or a walker or a wheelchair, wear a neck or back brace, wear special shoes, or move particularly obviously. Many of us SHOULD be wearing braces, using canes, or wearing special shoes but we refuse to give in to the pain.
We're disabled and no one gets it. Our families see a whole person and cannot comprehend that the pain is so searingly intense that we cannot function. If forced to function under those circumstances, the pain can make this mean, nasty, hateful alien emerge from within us that WE don't even recognize.
Society doesn't get it; the government doesn't get it. We don't look disabled, we have all our limbs and are technically able to move them, and they have no real way to ascertain the impact pain has. Perhaps they think because pain is a neurological function it's only in your head. Right.
We can tell them it steals your life. It robs you of doing anything other than what is absolutely necessary. It prevents you from doing your best at work. It prevents you from fully enjoying anything else that you try to do in an attempt to really live.
The fact is we're heroes. If anyone could begin to understand what it's like to wake up every day and have the first thing you sense is pain - not daylight, not the smell of coffee, not the sounds outside, but terrible pain - and mentally force yourself to go through the required motions of getting up, getting dressed, getting ready for work or the kids or whatever else we HAVE to do each and every day to survive, they would know we're amazing.
I realize this is a long rambling post so forgive me. I am in horrific pain right now and have tears streaming down my face as I write this. It's Sunday. One of my two days off for the weekend. I spent three hours yesterday laying on my bed with heat packs wrapped around my neck, shoulder, and arm (anyone with cervical spine issues will recognize that pain). The rest of the day I tried to get SOMETHING accomplished but it was all very sedentary. Today I woke up with what felt like a sledgehammer smashing my skull at my forehead and the base of my neck. I started the day with 3 naprosyn, a Vicodin, and two heat packs at the base of my neck. Writing this gave me something of value to do when I otherwise cannot do much of anything.
Now despite how depressing this post may sound, I also have not given up on the day. I am hoping that once all the drugs kick in I will have a few hours of functionality. I'm one of those people who doesn't feel I've had a good day unless I've accomplished something of value. So, while doing laundry and cleaning the kitchen are necessary, they don't do much for enriching my life.
I am determined to salvage some part of this day so we'll see. I'll be back later today.
My purpose was - and is - to reach out to others like me who deal with chronic pain every day of their lives. The truth is we're different. We hide it well when we have to. We try to avoid people when it's too horrific to hide. We find ways to mask it. And we try really, really hard to push ourselves beyond it so that we can sometimes still participate in those things that make life rewarding.
The truth is we're disabled; and it may be the worst kind of disability because there aren't always visual cues. Many of us don't use a cane or a walker or a wheelchair, wear a neck or back brace, wear special shoes, or move particularly obviously. Many of us SHOULD be wearing braces, using canes, or wearing special shoes but we refuse to give in to the pain.
We're disabled and no one gets it. Our families see a whole person and cannot comprehend that the pain is so searingly intense that we cannot function. If forced to function under those circumstances, the pain can make this mean, nasty, hateful alien emerge from within us that WE don't even recognize.
Society doesn't get it; the government doesn't get it. We don't look disabled, we have all our limbs and are technically able to move them, and they have no real way to ascertain the impact pain has. Perhaps they think because pain is a neurological function it's only in your head. Right.
We can tell them it steals your life. It robs you of doing anything other than what is absolutely necessary. It prevents you from doing your best at work. It prevents you from fully enjoying anything else that you try to do in an attempt to really live.
The fact is we're heroes. If anyone could begin to understand what it's like to wake up every day and have the first thing you sense is pain - not daylight, not the smell of coffee, not the sounds outside, but terrible pain - and mentally force yourself to go through the required motions of getting up, getting dressed, getting ready for work or the kids or whatever else we HAVE to do each and every day to survive, they would know we're amazing.
I realize this is a long rambling post so forgive me. I am in horrific pain right now and have tears streaming down my face as I write this. It's Sunday. One of my two days off for the weekend. I spent three hours yesterday laying on my bed with heat packs wrapped around my neck, shoulder, and arm (anyone with cervical spine issues will recognize that pain). The rest of the day I tried to get SOMETHING accomplished but it was all very sedentary. Today I woke up with what felt like a sledgehammer smashing my skull at my forehead and the base of my neck. I started the day with 3 naprosyn, a Vicodin, and two heat packs at the base of my neck. Writing this gave me something of value to do when I otherwise cannot do much of anything.
Now despite how depressing this post may sound, I also have not given up on the day. I am hoping that once all the drugs kick in I will have a few hours of functionality. I'm one of those people who doesn't feel I've had a good day unless I've accomplished something of value. So, while doing laundry and cleaning the kitchen are necessary, they don't do much for enriching my life.
I am determined to salvage some part of this day so we'll see. I'll be back later today.
Saturday, July 11, 2009
Bless My Animal Companions
In many ways, I am lucky. My body held up long enough for me to raise my kids. I think about all the running around to soccer games, track meets, and football games I did and thank God I was able to do it. While I get frustrated with myself, and want to do much more, at least I am not letting anyone else down because of my limitations. In fact, four of my very best friends are actually happy when I stay home.
Georgia is my Great Pyrenees and the only animal I have that is not a rescue. An old art friend who also raised Pyrs gave her to me as a puppy for my birthday ten years ago. Georgia has been a great dog and a great friend. She protected my kids when they were home and made everyone feel safe. Of course she also swiped any unprotected food left anywhere - including the kitchen table - but we all have our flaws. Now, she and I have a lot in common. Her hips are going and every step she takes is a struggle. Yet she still thinks and acts like a puppy. Today she wanted to play "chase" around the bathroom. My bathroom has two doors and is u-shaped, perfect for hiding and chasing. She used to love to run and hide around the corners and have me chase her. Sometimes I would hide and she would come find me. Sadly, she still wants to but her body won't cooperate. I understand.
Chloe is my 12 year old cat, all black with short but incredibly soft and silky fur. She is my buddy. She sleeps on the bed right near my head and is right there with me whenever I lie down. She's a talker and a passionate purr-er. She lets me know she's happy just to be with me. No expectations, no demands.
Koala looks like a ragdoll or Himalayan but since he's a rescue, I have no clue. Nonetheless, he is a gorgeous boy. We named him "Koala" because his wide dark nose reminded us of a koala bear. He is Mr. Chill. Mellow and laid back, Koala follows me from room to room and makes himself comfortable nearby, usually under a ceiling fan. He loves to be rubbed all over and lets me know in no uncertain terms that he is in heaven. He seems to know when I'm not feeling so great because he will lay right next to me and lick me wherever he can find bare skin.
Chainsaw - yes, Chainsaw - is the baby of the bunch. She is a very small, average looking short-haired tabby that was my son's (hence the name). When he moved back home, Chainsaw came with him. She is something else. On one hand, she is my baby. She is sweet and lovable and in my lap in two seconds flat if I sit down. She loves to lay with me on the couch and kept me company all last year when I pretty much LIVED on the couch when I wasn't at work. She is also the funniest cat I have ever had the pleasure of knowing and wildly entertaining. Her favorite place to be is under blankets, preferably right next to my stomach or knees. She plays with anything and everything including the stoppers from the sink drains, bottle caps, and random unsuspecting fingers.
Until recently, I also had two more members of my animal family. Teddy was twelve when he died in March and Foo, the bunny, was somewhere round four or five. I miss both of them very, very much.
If you're adding them up, you've probably figured out that up until recently, I had six animals. Trust me, it wasn't planned and I certainly would not do it intentionally. All of them - except Georgia - I rescued. Bunny Foo was the oddest. She was a domestic rabbit - a Blanc d'Hotot - baby that someone dumped in the parking lot at my office in July! (I live in South Texas -that's almost a death sentence.) I have never had a rabbit before so that was an experience. She cost me hundreds of dollars in computer and electronic equipment before I figured out how to "bunny-proof" my room.
These guys can be a lot of work without question. But they are worth every second and every dollar I spend on them. They amuse me and comfort me. I talk and they listen. Sometimes they talk and I listen. They distract me from my pain. They make me happy. I cannot imagine my world without them.
Georgia is my Great Pyrenees and the only animal I have that is not a rescue. An old art friend who also raised Pyrs gave her to me as a puppy for my birthday ten years ago. Georgia has been a great dog and a great friend. She protected my kids when they were home and made everyone feel safe. Of course she also swiped any unprotected food left anywhere - including the kitchen table - but we all have our flaws. Now, she and I have a lot in common. Her hips are going and every step she takes is a struggle. Yet she still thinks and acts like a puppy. Today she wanted to play "chase" around the bathroom. My bathroom has two doors and is u-shaped, perfect for hiding and chasing. She used to love to run and hide around the corners and have me chase her. Sometimes I would hide and she would come find me. Sadly, she still wants to but her body won't cooperate. I understand.
Chloe is my 12 year old cat, all black with short but incredibly soft and silky fur. She is my buddy. She sleeps on the bed right near my head and is right there with me whenever I lie down. She's a talker and a passionate purr-er. She lets me know she's happy just to be with me. No expectations, no demands.
Koala looks like a ragdoll or Himalayan but since he's a rescue, I have no clue. Nonetheless, he is a gorgeous boy. We named him "Koala" because his wide dark nose reminded us of a koala bear. He is Mr. Chill. Mellow and laid back, Koala follows me from room to room and makes himself comfortable nearby, usually under a ceiling fan. He loves to be rubbed all over and lets me know in no uncertain terms that he is in heaven. He seems to know when I'm not feeling so great because he will lay right next to me and lick me wherever he can find bare skin.
Chainsaw - yes, Chainsaw - is the baby of the bunch. She is a very small, average looking short-haired tabby that was my son's (hence the name). When he moved back home, Chainsaw came with him. She is something else. On one hand, she is my baby. She is sweet and lovable and in my lap in two seconds flat if I sit down. She loves to lay with me on the couch and kept me company all last year when I pretty much LIVED on the couch when I wasn't at work. She is also the funniest cat I have ever had the pleasure of knowing and wildly entertaining. Her favorite place to be is under blankets, preferably right next to my stomach or knees. She plays with anything and everything including the stoppers from the sink drains, bottle caps, and random unsuspecting fingers.
Until recently, I also had two more members of my animal family. Teddy was twelve when he died in March and Foo, the bunny, was somewhere round four or five. I miss both of them very, very much.
If you're adding them up, you've probably figured out that up until recently, I had six animals. Trust me, it wasn't planned and I certainly would not do it intentionally. All of them - except Georgia - I rescued. Bunny Foo was the oddest. She was a domestic rabbit - a Blanc d'Hotot - baby that someone dumped in the parking lot at my office in July! (I live in South Texas -that's almost a death sentence.) I have never had a rabbit before so that was an experience. She cost me hundreds of dollars in computer and electronic equipment before I figured out how to "bunny-proof" my room.
These guys can be a lot of work without question. But they are worth every second and every dollar I spend on them. They amuse me and comfort me. I talk and they listen. Sometimes they talk and I listen. They distract me from my pain. They make me happy. I cannot imagine my world without them.
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