The Wikepedia entry on pain says
"This article is about physical pain. For pain in a broader sense, see Suffering." For some reason, this makes me laugh.
Sally Cruikshank animated this bit for Sesame Street--I love it!
Years ago, I noticed that when a big weather front came through, I'd stop sleeping. Later, I paid attention and recognized that when there was a dramatic change in the weather, such as the one we're having now--when the first wintery cold front and rain moves in-- I'd have an increase in fatigue, pain, and other fibromyalgia symptoms. Poking around, I've found that there is research that shows that many people with arthritic conditions, depression or migraine also feel these changes. It's not clear if it is a specific weather factor, such as the drop in barometric pressure, or the change itself, as some who study migraines believe, that triggers the increase in pain, but the correlations are unmistakable. Over the years, I've come to recognize those times of the year and weather conditions that trigger the worst flares, and the beginning of the heating season in MN, my body goes kablooie.
For the last several days, I've been a hurting individual: to the usual stiffness, joint aches, tight muscle bands, the flare has added stabbing pains: it feels as if someone stabbed me with an ice-pick behind my eye, another in front of my ear, and another at the base of my skull, burning pains down my back to under my shoulder-blade, to that the spot I named H.A.L.; throbbing pains --pressure behind my eye and ear on the right side. My right ear feels itchy and hot, there are knots of pain where my lymph nodes lie under my jaw. The back pain is almost unnoticeable through the intensity, the electric shooting pains in my hands and feet feel 'normal.'
Monday it got so I had to focus just to speak clearly. Grading papers, writing for a deadline, and peering at the computer all made it worse. I am so used to sucking it up that I plow on until I feel as if I'm going to collapse. I can do things like let the dishes pile up, stay in bed later or slow down at work (I even canceled classes one day) but when the weather is moving through, I just have to hunker down and wait it out.
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Thursday, October 01, 2009
Thursday, December 18, 2008
Some days it's a struggle
As we pulled into the Lund's parking lot, I saw an older woman inching through the muddly slush with a walker. I said cheerfully, without thinking, "There I go, in a few years!" My daughter was horrified: "Way to see the worst of things," she said. What I didn't say to her was that I had a flash of fear and awareness, of how hard it had been to get around with my broken foot a few years ago, of the limits of the last two years of physical therapy for my shoulders and hip, of recognition of a relative's rheumatoid arthritis, the news that two dear people had recently suffered the same broken bone in a shoulder through falls: my own fear that what is currently a manageable chronic pain syndrome could engulf my life as it has those of others. And of course, one day I will probably be unable to walk without support. It's a question of when, not if. We all decay and die.
I told her that I was grateful for my health, not expecting the worst, but she wasn't buying it. On the one hand, it could be said that I was seeing the worst. On the other, I was also (at least internally) feeling grateful for my health. But I was also repeating a gesture I'd seen my mother make many years ago, when she said cheerfully, "I'll be one of those ladies pushing a shopping cart in the Tenderloin" and we, her daughters, had reacted with the same horror at what seemed like a fatalistic expectation of the worst, but now, I see, was a kind of magical conjuring: "I'll say out loud what is my fear, and thus dissipate its power over me." Because my mother is not one of those homeless women on Ellis street; she has worked hard and taken good care of herself. And I am doing the same. But the power our words have on our children is not only that of our muddled intentions, and I need to remember that.
After thinking about this incident, I recognize that lately I have re-activated my "cynical defense mode." It's a form of shielding myself from all the pain that I'm afraid would overwhelm me if I really held it in consciousness without defenses. On some level, the jokes about shoes flying at Bush make me laugh, but the reality of the torture inflicted on the shoe-thrower horrifies me. The recognition that his rage is felt by millions who contemplate the deaths of all those killed and maimed as "collateral damage" in Iraq is almost too much to bear. And after the long drawn-out struggle to elect a person who symbolizes our desire for change, the pain that I hear from so many who feel betrayed because Obama has invited an activist for bigotry, Rick Warren, to read an invocation at his inauguration is also my pain (but think how many people would scream if he'd invited Rev.Wright!). I can't shut it all out, and sometimes I feel as if I am écorchée vive. But I am most profoundly aware of my gratitude because I am trying to be mindful of my fears, and transform them into compassion. Unfortunately, what I am doing to defend myself is experienced by others as cynicism at best and anger at worst, but certainly as negativity and not compassion. (So I talked to my daughter about this and we hugged each other and reminded each other that we love each other very much).
My hat's off to Phoenix Woman for reminding us all that along with Rick Warren, another person who has been invited to participate in the inauguration is Rev. Joseph Lowery. She linked to this incredibly thoughtful post by a young man named Matt who describes the effect that Rev. Lowery had on him.
I told her that I was grateful for my health, not expecting the worst, but she wasn't buying it. On the one hand, it could be said that I was seeing the worst. On the other, I was also (at least internally) feeling grateful for my health. But I was also repeating a gesture I'd seen my mother make many years ago, when she said cheerfully, "I'll be one of those ladies pushing a shopping cart in the Tenderloin" and we, her daughters, had reacted with the same horror at what seemed like a fatalistic expectation of the worst, but now, I see, was a kind of magical conjuring: "I'll say out loud what is my fear, and thus dissipate its power over me." Because my mother is not one of those homeless women on Ellis street; she has worked hard and taken good care of herself. And I am doing the same. But the power our words have on our children is not only that of our muddled intentions, and I need to remember that.
After thinking about this incident, I recognize that lately I have re-activated my "cynical defense mode." It's a form of shielding myself from all the pain that I'm afraid would overwhelm me if I really held it in consciousness without defenses. On some level, the jokes about shoes flying at Bush make me laugh, but the reality of the torture inflicted on the shoe-thrower horrifies me. The recognition that his rage is felt by millions who contemplate the deaths of all those killed and maimed as "collateral damage" in Iraq is almost too much to bear. And after the long drawn-out struggle to elect a person who symbolizes our desire for change, the pain that I hear from so many who feel betrayed because Obama has invited an activist for bigotry, Rick Warren, to read an invocation at his inauguration is also my pain (but think how many people would scream if he'd invited Rev.Wright!). I can't shut it all out, and sometimes I feel as if I am écorchée vive. But I am most profoundly aware of my gratitude because I am trying to be mindful of my fears, and transform them into compassion. Unfortunately, what I am doing to defend myself is experienced by others as cynicism at best and anger at worst, but certainly as negativity and not compassion. (So I talked to my daughter about this and we hugged each other and reminded each other that we love each other very much).
My hat's off to Phoenix Woman for reminding us all that along with Rick Warren, another person who has been invited to participate in the inauguration is Rev. Joseph Lowery. She linked to this incredibly thoughtful post by a young man named Matt who describes the effect that Rev. Lowery had on him.
Monday, May 05, 2008
UCSD videos on Fibromyalgia, Parts One and Two
This is what they pretend to do on "House": diagnose tricky diseases, but without the sex and snarky jokes.
I was surprise to learn that there have been some significant changes in the understanding of fibromyalgia in terms of the use of "tender points" as part of the diagnosis; apparently, there is more recognition that fibromyalgia pain can occur in many other sites, and in response to a variety of stimuli (odors, lights, loud noises) that there is quite likely a Central Nervous System disregulation in the processing of pain and other stimuli. Researchers are finally starting to listen to patients, accumulate enough data and anecdotes, and see more patterns. Another new idea is that fibromyalgia may be more common in men than previously believed, because there was an overemphasis on a specific "tender points" exam.
One doctor shows where the tender points are. Another talks about conditions that need to be ruled out, such as various inflammatory diseases like lupos or rheumatoid arthritis, hypothyroidism. Sleep deprivation, depression, and other issues are discussed.
This discussion may be too dry and technical for most people, but for those of us with chronic pain disorders in general and fibromyalgia in particular, this is a fascinating and very useful discussion, especially because it shows what doctors SHOULD be doing to help us understand what fibromyalgia is and is not.
Part One and Part Two.
Part Two deals with the "psycho-social" environment and stressors that affect people with chronic pain; pay attention to the person, not just the pain. Since I got my diagnosis (about 16 years ago), the medical community has learned a tremendous amount, and there has been a shift to a more compassionate and clear-eyed view of fibromyalgia and chronic pain.
I was surprise to learn that there have been some significant changes in the understanding of fibromyalgia in terms of the use of "tender points" as part of the diagnosis; apparently, there is more recognition that fibromyalgia pain can occur in many other sites, and in response to a variety of stimuli (odors, lights, loud noises) that there is quite likely a Central Nervous System disregulation in the processing of pain and other stimuli. Researchers are finally starting to listen to patients, accumulate enough data and anecdotes, and see more patterns. Another new idea is that fibromyalgia may be more common in men than previously believed, because there was an overemphasis on a specific "tender points" exam.
One doctor shows where the tender points are. Another talks about conditions that need to be ruled out, such as various inflammatory diseases like lupos or rheumatoid arthritis, hypothyroidism. Sleep deprivation, depression, and other issues are discussed.
This discussion may be too dry and technical for most people, but for those of us with chronic pain disorders in general and fibromyalgia in particular, this is a fascinating and very useful discussion, especially because it shows what doctors SHOULD be doing to help us understand what fibromyalgia is and is not.
Part One and Part Two.
Part Two deals with the "psycho-social" environment and stressors that affect people with chronic pain; pay attention to the person, not just the pain. Since I got my diagnosis (about 16 years ago), the medical community has learned a tremendous amount, and there has been a shift to a more compassionate and clear-eyed view of fibromyalgia and chronic pain.
Friday, March 14, 2008
But you look just fine!
Good news: I can raise both arms over my head again, after a year and a half of physical therapy; the frozen shoulder and rotator cuff injuries are almost healed. But yesterday I started to get a fibromyaogia flare-up and it's really annoying me. This one is: migraine, tender/trigger points along the left side on my skull, jaw, neck, shoulder and back (ie: painful knots in muscles), inability to concetrate, irritability, bad digestion, sensitivity to all stimuli (light, touch, sound, cold) and fatigue, fatigue. Like having the flu after having been struck repeatedly with a stick.
It's hard to talk about fibromyalgia because it's an invisible chronic illness. I tend to function fairly well in spite of the symptoms, so people assume I'm OK. And if I talk about the symptoms, I've often been seen as a whiner. Sometimes this makes me really mad. This song really gets to me for that reason, and the video text is a good summary of how I feel sometimes as well.
A somewhat less emotional take that shows a good discussion about fibro by two people who have made a documentary Living with Fibromyalgia. It gets to the hopeful side, and talks about how we manage. More women are affected than men, but I think some men have a harder time getting a diagnosis because they are supposed to ignore pain.
It's hard to talk about fibromyalgia because it's an invisible chronic illness. I tend to function fairly well in spite of the symptoms, so people assume I'm OK. And if I talk about the symptoms, I've often been seen as a whiner. Sometimes this makes me really mad. This song really gets to me for that reason, and the video text is a good summary of how I feel sometimes as well.
A somewhat less emotional take that shows a good discussion about fibro by two people who have made a documentary Living with Fibromyalgia. It gets to the hopeful side, and talks about how we manage. More women are affected than men, but I think some men have a harder time getting a diagnosis because they are supposed to ignore pain.
Saturday, December 22, 2007
On a pain scale of 1-10, in which 10 is passing out, this was a 9
I"m too lazy to mess around with the template code to get the picture to line up in the header banner, but I decided to make a change.
Yesterday was my visit to the radiologist for the cortisone injection into the shoulder joint. Because I am allergic to iodides, and the tracing fluid has iodine in it, they decided to do the injection "by feel." They used the X-ray machine to locate the spot, drew an X, and then gave me a numbing agent. Then the doctor inserted the surgical needle. It hurt like hell, so he pulled it out and tried again. This time, he slipped it in the right spot, and pushed in the lidocaine and the meds. It's not a pleasant feeling, and they warned me that the joint capsule might hurt later because of the extra fluid, but we were all happy it seemed to work out, and that I didn't break out in hives or have an allergic attack.
I had to bring a driver, but I felt fine for the several hours afterward. Then the lidocaine wore off and I spent the rest of the evening in the most excruciating pain I have ever experienced in my life: worse than when I broke my foot, worse that the appendicitis, worse than childbirth (at least what I remember of it, because that memory of pain has faded, no doubt due to the intrathecal morphine I got at the end). I felt as if my entire arm and side were exploding with pain. No position made a difference. I could move it, but every move was agony. Since I had gone with some friends to see Sweeny Todd, I couldn't tell how much of my pain was physical and how much was psychic at having to watch Johnny Depp slit several throats in bloody close-up while singing about Joanna! Yikes. Talk about a nightmare. I love me some Tim Burton, but the throat-cutting was way beyond my gore tolerance level.
Once I got home, I called the after-hours nurse line to make sure that I wasn't having an allergic reaction (no problems breathing, no rash), took four aspirin and four sleeping pills and went to bed with an ice-pack. This morning, the agony is gone, it just hurts in a more normal way, as if I sprained something. They told me that I would have some discomfort, but they freakin' lied. They should have said, "Here, take this Vicodin, curl up in bed and be prepared for your entire right side to feel as if it is on fire." I'm still pissed that they didn't give me any pain-killers, but the worst is over. Now I have to see if the result is that I can increase my mobility by keeping up with my physical therapy routine. I refuse to think that this was a mistake, YET, but I have to wonder if he hit a nerve the first time he inserted the needle.
Yesterday was my visit to the radiologist for the cortisone injection into the shoulder joint. Because I am allergic to iodides, and the tracing fluid has iodine in it, they decided to do the injection "by feel." They used the X-ray machine to locate the spot, drew an X, and then gave me a numbing agent. Then the doctor inserted the surgical needle. It hurt like hell, so he pulled it out and tried again. This time, he slipped it in the right spot, and pushed in the lidocaine and the meds. It's not a pleasant feeling, and they warned me that the joint capsule might hurt later because of the extra fluid, but we were all happy it seemed to work out, and that I didn't break out in hives or have an allergic attack.
I had to bring a driver, but I felt fine for the several hours afterward. Then the lidocaine wore off and I spent the rest of the evening in the most excruciating pain I have ever experienced in my life: worse than when I broke my foot, worse that the appendicitis, worse than childbirth (at least what I remember of it, because that memory of pain has faded, no doubt due to the intrathecal morphine I got at the end). I felt as if my entire arm and side were exploding with pain. No position made a difference. I could move it, but every move was agony. Since I had gone with some friends to see Sweeny Todd, I couldn't tell how much of my pain was physical and how much was psychic at having to watch Johnny Depp slit several throats in bloody close-up while singing about Joanna! Yikes. Talk about a nightmare. I love me some Tim Burton, but the throat-cutting was way beyond my gore tolerance level.
Once I got home, I called the after-hours nurse line to make sure that I wasn't having an allergic reaction (no problems breathing, no rash), took four aspirin and four sleeping pills and went to bed with an ice-pack. This morning, the agony is gone, it just hurts in a more normal way, as if I sprained something. They told me that I would have some discomfort, but they freakin' lied. They should have said, "Here, take this Vicodin, curl up in bed and be prepared for your entire right side to feel as if it is on fire." I'm still pissed that they didn't give me any pain-killers, but the worst is over. Now I have to see if the result is that I can increase my mobility by keeping up with my physical therapy routine. I refuse to think that this was a mistake, YET, but I have to wonder if he hit a nerve the first time he inserted the needle.
Tuesday, December 18, 2007
More about frozen shoulder
Arrgh! the last push of the semester is always such a challenge! Although I have read the rough draft of all thirty senior projects in the last two weeks, I must reread them because they are often quite improved. I also promised I'd write comments for those who want them, and this time most of them want them. Then I have to find a balance between my good wishes for the nice folks who finished their degrees and my irritation at those who made the same mistakes I exhorted them not to make, didn't follow instructions, or in some other way got up my nose. I've found that I can manage to read two or three in a row, and then I must do something else. This week that something else has been going to a daily health appointment, physical therapy, the orthopedist, etc, to see how far I've come with my shoulder recovery.
The good news is that I have much more range of motion and less pain. The bad news is I still only have about half my range of motion, and a lot of pain. It's definitely frozen shoulder, or adhesive capsulitis, and I am scheduled to have a second cortisone injection in a few days, this time into a part of the joint that is harder to reach, so I have to go to radiology and find someone to drive me home (probably due to anaesthesia). Because I showed such marked improvement after the first injection, I'm very hopeful that this one will also make my recovery faster. I'm trying hard not to get down about the slowness of the process, which is just the nature of the recovery for this particular problem. It has been almost a year and a half since I started having these shoulder problems, and I miss dancing, biking, and being able to move my arms without pain. But I also just spoke to may sister who has rheumatoid arthritis, and is facing the choice of taking a very toxic medication if she wants to be able to walk very well, so I'm comparatively fortunate. My hope is that the time between the semesters will give me a break from some of the stress of work so I can rest up.
Poking around on the internet, I've learned that frozen shoulder, as oppose to rotator cuff impingement which was my earlier diagnosis, affects primarily women between the ages of 40-60, is often associated with diabetes (but all my blood work is normal), and is often of unknown cause. Of course! But it's likely that contracture, in part aggravated by subscapular trigger points, is a big part of it. In other words, I suspect that the underlying condition that causes the symptoms of fibromyalgia is a contributor, since the trigger points seem to be the result of contractures in locations other than the shoulder joint.
The good news is that I have much more range of motion and less pain. The bad news is I still only have about half my range of motion, and a lot of pain. It's definitely frozen shoulder, or adhesive capsulitis, and I am scheduled to have a second cortisone injection in a few days, this time into a part of the joint that is harder to reach, so I have to go to radiology and find someone to drive me home (probably due to anaesthesia). Because I showed such marked improvement after the first injection, I'm very hopeful that this one will also make my recovery faster. I'm trying hard not to get down about the slowness of the process, which is just the nature of the recovery for this particular problem. It has been almost a year and a half since I started having these shoulder problems, and I miss dancing, biking, and being able to move my arms without pain. But I also just spoke to may sister who has rheumatoid arthritis, and is facing the choice of taking a very toxic medication if she wants to be able to walk very well, so I'm comparatively fortunate. My hope is that the time between the semesters will give me a break from some of the stress of work so I can rest up.
Poking around on the internet, I've learned that frozen shoulder, as oppose to rotator cuff impingement which was my earlier diagnosis, affects primarily women between the ages of 40-60, is often associated with diabetes (but all my blood work is normal), and is often of unknown cause. Of course! But it's likely that contracture, in part aggravated by subscapular trigger points, is a big part of it. In other words, I suspect that the underlying condition that causes the symptoms of fibromyalgia is a contributor, since the trigger points seem to be the result of contractures in locations other than the shoulder joint.
Tuesday, November 06, 2007
Relief!
This morning the orthopedist gave me an injection of cortisone in my right shoulder joint to alleviate the inflammation of the bursa. It relieved the pain almost immediately, although I still have limited range of motion. She has also authorized physical therapy twice a week. It will probably take several months to recover, but right now, I am so grateful that the pain that was taking over my waking and sleeping hours is gone.
So here is a Thank You song, from Sly and the Family Stone, my hometown faves.
So here is a Thank You song, from Sly and the Family Stone, my hometown faves.
Thursday, November 01, 2007
A tiny bit of wisdom, after all these years.
I had my wisdom teeth taken out when I was about 22-23. I only had the two in my lower jaw, so I was lucky that it wasn't more painful. In the past month or so, I've had terrible toothache and jaw pain on my left side. It felt as if a tooth was cutting through the gum on the inner part of my jaw, below the place where the wisdom tooth would have been. Was it possible to have another wisdom tooth? Why could I feel this hard bony or toothy protrusion, cutting through the gum when I touched it with my fingernail? My dentist said it was possible that a tooth fragment from the original wisdom tooth removal had worked its way to the surface over the past few decades. I am about to go to an appointment to see if there is anything else wrong, but yesterday, it hurt so much that I clawed at the little bony bump, and it came out!!! It was exactly like a grain of sand. Tooth? bone? whatever. It still hurts, but not as much. So, here I am at almost 50, and this little bit of the past has worked its way to the surface and broken free. I'd like to think of this as a sign. Of something or other.
Saturday, October 27, 2007
Warning: Don't read this if you don't want to hear me whine
My rotator cuff tendonitis coupled with my fibromyalgia has meant that this semester my normal levels of chronic pain have shot way up. It's bad when I just wake up--I spend about half an hour stretching gently in bed, and that helps, but the pain in my shoulder is acute, and doesn't respond to that. After five o'clock at night, I'm in agony. It's hard to be completely present to my child, continue working, or enjoy time with friends when you're in pain. Some things it hurts too much to do: tuck in my shirt in back, put deodorant on my left armpit, write on the blackboard, raise my right arm above shoulder height, carry things with my right hand or arm, put on and take off my clothes, doing dishes, carrying in groceries, carrying laundry downstairs, putting it in and out of the washer and dryer, getting dressed, wiping a counter. I'm turning fifty, not eighty, but my body feels old and crippled.
I'm going to ask the guys to clean my house as my birthday present. Isn't that pathetic?
I have been seeing a physical therapist, and that has helped a little, but the screwed-up thing about constant pain is that it wears down your body and then it wears down your spirit. I'm starting to get to that well-known point where I am having difficulty coping on a daily level. The shoulder pain has meant that the usual exercise that I do to manage the fibromyalgia pain is out, and the fibromyalgia means that I am hyper-sensitive to the shoulder inflammation and slow to heal. I hate the fact that it is preventing me from keeping my house clean (vacuuming is probably the worst for fibro), and it even hurts to write on the blackboard in class. About once a day, I manage to move my arm is such a way that the shoulder joint pinches the muscles and tendons so hard, I want to cry.
The shoulder pain has become so bad this week that there are times when I can hardly bear it. Icing, pain relievers, the exercises my therapist has recommended, all are a small help, but the need to work so many hours in the last several weeks has me feeling as if I'm sliding back rather than making progress. I'm starting to lose brain function from lack of sleep: I blank out on words, my memory is shot, I react sluggishly. Most distressing is that this kind of pain and fatigue can also kick me into a mental space that I've worked hard to leave: cranky, paranoid, snappish. That's scary.
Then there's the fact that the shoulder pain interferes more with sleep, which causes the fibromyalgia to flare up, so that now I have returned to the state where I feel as if someones has been beating me with a stick--everything hurts, all over, but my hands, arms, shoulders, neck, face and upper back are either aching all the time, or feel as if they are laced with barbed wire.
Ironically enough, I'm actually very happy these days. That's the paradox of the physiology of pain-induced depression; I love what I'm doing at work, my family is wonderful, I wake up thankful for my good fortune. But the pain acts as a curtain that I have to push aside, separating me from myself. I'm familiar with this cycle. If something doesn't happen soon to improve the pain situation, I risk falling into the hole of exhaustion and the effects on mood that this brings.
I don't have many people I can talk to about this because frankly, who wants to hear about it? I suffer from the hyper-competent single mother complex as well: if I don't do it, nobody will. That's not actually true, but it's hard to let go of that mind-set.
Coping strategies for the day: hot bath, walk around the neighborhood to buy birthday presents, gentle stretches, ice shoulder, eat healthy food, breathe, leave work until tomorrow. Long term: see my doctor again, try to get back to twice a week with PT, mental health therapist, massage. All those things take time from work. So I will need to talk with my department chair to document my situation, not something I look forward to doing.
Good news: I got a paper accepted to a conference in Ireland! Bad news: I'm not sure how I'm going to be able to write it.
/pity party>
I'm going to ask the guys to clean my house as my birthday present. Isn't that pathetic?
I have been seeing a physical therapist, and that has helped a little, but the screwed-up thing about constant pain is that it wears down your body and then it wears down your spirit. I'm starting to get to that well-known point where I am having difficulty coping on a daily level. The shoulder pain has meant that the usual exercise that I do to manage the fibromyalgia pain is out, and the fibromyalgia means that I am hyper-sensitive to the shoulder inflammation and slow to heal. I hate the fact that it is preventing me from keeping my house clean (vacuuming is probably the worst for fibro), and it even hurts to write on the blackboard in class. About once a day, I manage to move my arm is such a way that the shoulder joint pinches the muscles and tendons so hard, I want to cry.
The shoulder pain has become so bad this week that there are times when I can hardly bear it. Icing, pain relievers, the exercises my therapist has recommended, all are a small help, but the need to work so many hours in the last several weeks has me feeling as if I'm sliding back rather than making progress. I'm starting to lose brain function from lack of sleep: I blank out on words, my memory is shot, I react sluggishly. Most distressing is that this kind of pain and fatigue can also kick me into a mental space that I've worked hard to leave: cranky, paranoid, snappish. That's scary.
Then there's the fact that the shoulder pain interferes more with sleep, which causes the fibromyalgia to flare up, so that now I have returned to the state where I feel as if someones has been beating me with a stick--everything hurts, all over, but my hands, arms, shoulders, neck, face and upper back are either aching all the time, or feel as if they are laced with barbed wire.
Ironically enough, I'm actually very happy these days. That's the paradox of the physiology of pain-induced depression; I love what I'm doing at work, my family is wonderful, I wake up thankful for my good fortune. But the pain acts as a curtain that I have to push aside, separating me from myself. I'm familiar with this cycle. If something doesn't happen soon to improve the pain situation, I risk falling into the hole of exhaustion and the effects on mood that this brings.
I don't have many people I can talk to about this because frankly, who wants to hear about it? I suffer from the hyper-competent single mother complex as well: if I don't do it, nobody will. That's not actually true, but it's hard to let go of that mind-set.
Coping strategies for the day: hot bath, walk around the neighborhood to buy birthday presents, gentle stretches, ice shoulder, eat healthy food, breathe, leave work until tomorrow. Long term: see my doctor again, try to get back to twice a week with PT, mental health therapist, massage. All those things take time from work. So I will need to talk with my department chair to document my situation, not something I look forward to doing.
Good news: I got a paper accepted to a conference in Ireland! Bad news: I'm not sure how I'm going to be able to write it.
/pity party>
Tuesday, October 02, 2007
Why I love my job, part two.
Portability. I can take my work on the road. Today is one of those days when I sit down and crank out all those boring letters so I can get them off my list of things to do: recommendations, reports, requests, meeting minutes, student evaluations. Only a few more left to do, but I need a break. Once again, I must sing the praises of the Midtown Global Market! At the Produce Exchange, I was able to buy perfectly ripe red Bartlett pears, not those rock-hard, sad pears I get everywhere else, even at my co-op. Then I went downstairs to the Hennepin County Service center where I got my drivers license renewed without waiting in line. In fact, they called my number so fast, I barely had time to fill out the form. The kind woman took my picture and then said we should take a better one, so my next picture will not be wacky-looking. Then I had a Cuban sandwich from Manny's Tortas. I always think I'm going to try something new, and I always end up getting the same thing because it is so GOOOOOD. And they have Wi-Fi, so I can keep on working while I watch the rain fall outside, and eavesdrop on lunchtime conversations while I chip away at the list of things-to-do. Hey, maybe I'll even have time to read something something today, what a thought!
I've been to the Global Market more lately because my physical therapy center is right across the street. I've been going once a week for this shoulder problem. Last year it was the left shoulder (rotator cuff impingement they called it. Ouch is what I called it). Now it is the right, the writing arm. The pain when I make the wrong move is so intense I want to cry--effectively, a tendon is being pinched between the bones of my shoulder joint. Imagine slamming your hand in the door, but on the inside. Progress is slow, but real. I'm still feeling intense pain when I move my arm the wrong way, but I've recovered a lot of range of motion, and I can see that it will get better. Patience is not one of the qualities for which I am best known, so living with this limitation has been an exercise in acquiring more patience. Ryan, my therapist, is a wonderworker. I am in awe of his ability to do exactly what is needed to help me heal. This is the first time a physical therapist has given me such relief. I think it is because in this office, they specialize in sports therapy, and the therapists themselves seem to be atheletes. My hope is that my shoulder will heal completely so I'll be able to dance without fear again.
I've been to the Global Market more lately because my physical therapy center is right across the street. I've been going once a week for this shoulder problem. Last year it was the left shoulder (rotator cuff impingement they called it. Ouch is what I called it). Now it is the right, the writing arm. The pain when I make the wrong move is so intense I want to cry--effectively, a tendon is being pinched between the bones of my shoulder joint. Imagine slamming your hand in the door, but on the inside. Progress is slow, but real. I'm still feeling intense pain when I move my arm the wrong way, but I've recovered a lot of range of motion, and I can see that it will get better. Patience is not one of the qualities for which I am best known, so living with this limitation has been an exercise in acquiring more patience. Ryan, my therapist, is a wonderworker. I am in awe of his ability to do exactly what is needed to help me heal. This is the first time a physical therapist has given me such relief. I think it is because in this office, they specialize in sports therapy, and the therapists themselves seem to be atheletes. My hope is that my shoulder will heal completely so I'll be able to dance without fear again.
Sunday, June 24, 2007
On practice
NPR has a series called "This I believe", inspired by Edward R Murrow. This morning while I was making my coffee, I turned on the radio and caught this piece by singer-songwriter Mary Chapin Carpenter. I happen to love her music, and I was distressed to hear that she had recently had a narrow escape from death; she suffered chest pains, and it turned out she had blood clots in her lungs. She wrote a piece about the aftermath of the experience, and the depression she suffered, her struggle to recover her connection with joy. Having experienced some similar struggles in my life (without the pulmonary embolism part), I was glad to be reminded that I, too, have found my way out of despair over illness through a practice of gratitude.Here's one from the original radio series in the 50s by dancer Martha Graham in which she talks about practice.
Friday, June 01, 2007
First aid for a scald
Shriek. Jump away from the plunger coffee pot which has turned into a volcano. Run cold water over the scalded area on the inside of right arm. Cry. Stand with your arm under the cold water for at least ten minutes. Splash cold water into armpit to remove coffee grounds. Clean coffee splashes off stove, fridge, floor. Run more cold water over burned area. Rinse out clothes. Curse. Apply ice packs to entire length of inside right arm, including armpit. Google "first aid scald" and determine that your burn is "superficial" even though it hurts like the dickens because there are no blisters, oozing or skin penetration areas. Note that the use of adhesive bandages and the application of creams, lotion, fat, or any other substances are not recommended. Feel sorry for self. Remember the lawsuit over scalding coffee at McDonalds with more empathy. Compare burn sensations to the last bad sunburn on upper thighs from canoing without sunscreen. Remember the horrible accident when Cynthia and Billy Allen got third degree burns from boiling water because their mother had left the eight-year old girl to heat a bottle for the toddler who pulled the pot of boiling water off the stove onto both of them.
Wonder if Tylenol or aspirin will work better for the pain. Wish there were some vicodin left from the broken foot episode.
ETA: Next day, it's still a little painful, but healing well.
Learn how to swear the way they do it in Spain:
Wonder if Tylenol or aspirin will work better for the pain. Wish there were some vicodin left from the broken foot episode.
ETA: Next day, it's still a little painful, but healing well.
Learn how to swear the way they do it in Spain:
Friday, March 30, 2007
Chronic illness and telling our stories
I have had the symptoms of fibromyalgia since I was 17 (I'm now 49)but did not get a diagnosis until I was 32. There were many years of going to doctors, describing my symptoms (fatigue, flu-like symptoms without fever, all-over pain and severe pain in specific tender spots, a few others) and meeting with bafflement or indifference, sometimes even the "women are hysterical and you are neurotic" attitude. I knew the pain was not "all in my head" but for several years I simply gave up on seeking help from doctors.
I finally met a doctor at the U (who is now in pediatrics) who was able to show me that provide me with an accurate diagnosis, and who started me on a path of learning about the syndrome and how to manage it. At that time, under the advice of this doctor, I undertook a holistic approach that combined physical therapy, counseling, trigger point injection therapy, major changes in ergonomics at work and at home, some medications to help with sleep issues and serotonin levels, massage, and even moving out of a noisy apartment that interfered with sleep. I attended a weekend clinic at Abbot Northwestern that was enormously helpful in getting me to take a systematic approach to improving my daily life. Within a year, my health had improved immensely, although I have never been totally symptom free. I am enormously grateful to this doctor for helping me make major changes in my life that have alleviated the worst of the pain. For years, I resisted medications as part of my treatment regime but in recent years I have accepted that some medications are necessary for me, and I have found some whose side-effects are acceptable.
Over the years, I have studied any research I could find, and worked on diet and specific kinds of exercise as other factors that help me improved my quality of life. While I have never been symptom-free, and probably never will be, I can say that the symptoms have never again been as severe as they were before I was diagnosed. For a while, however,, I struggled with the idea that this is a chronic condition for which there is no "cure" as it has affected my ability to work up to my potential, and as a professional I hated the idea that I was not going to be able to just "overcome" this with sheer power of will! I have considered leaving academia, but after considerable reflection and some changes in my work environment, I have found accommodation that allow me to continue with the work I love, but in a way that allows me to take better care of myself. This aspect is an ongoing struggle for me, but I continue to work actively at changing my approach toward work. I think it can be hard for successful, highly motivated people to let go of an image of themselves that does not include these new limits.
With the support of a doctor I have seen for the last 14 years, I have continued to manage my symptoms (including depression) in such a way that I have continued to be able to work and be a good parent to my daughter who is now 12, and, most of all, to enjoy life.
My understanding of CFS is limited, and I realize that it is not identical to fibromyalgia (although there may be overlapping symptoms and it is possible that they are manifestations of an underlying disregulation of a physiological system) I have had a sleep test done that shows that my sleep cycles are not normal, and that is one of the factors that seems to accompany fibromyalgia as well as CFS.It was
useful because it ruled out a number of conditions (sleep apnea, restless leg syndrome).
I do know that in recent years, there has been much more research and support from the medical establishment both for more accurate diagnosisand for ways to treat and manage symptoms than when I first began to consult doctors in the late 70s.
I know that the search for treatment and the path to relief can seem long and tedious, and it can be frustrating to search for a doctor with real understanding and experience in treatment, but I can say from my own experience that my persistence has paid off for me in significant improvement in my life. I have been very grateful for the support and understanding of friends and family, and I have also learned to ask for help when I need it. Disability Services at the U has helped me get ergonomic furniture for my office, and has helped broker meetings with my department chair and HR to seek some official recognition of the fact that I am entitled to accommodation at work, although I still have to work more hours than are really healthy for me, and I am still looking for a balance in that aspect of my life. As I am a single parent
I have to balance my need to cut back on work with my need to maintain an income. Ideally, I would be working half-time.
Friday, December 15, 2006
Fibromyalgia, sleep disorders and adrenaline
I've recently discovered the research of a doctor from Mexico, Dr Manuel Martinez-Lavin, that is the most persuasive account I have found so far (and I think I have read almost everything on the subject) of what fibromyalgia does to the body and how it works.
People with fibromyalgia often have unrefreshing sleep; they sleep but wake up tired and achy, as if they have the flu. Pain is both all-over, and located in "tender spots." I used to say this "feels like someone beat me with a stick." This was my experience--sleep that was unrefreshing--until I stopped nursing and my hormones changed. Then I just....stopped sleeping. I would sleep about 2 hours a night. A good night was when I could sleep for 4 hours, whether they were consecutive or not. My symptoms got worse and doing everything and anything was a challenge. My doctor and I tried lots of different approaches to improve my sleep: acupuncture, physical therapy, nutrition, sleep hygiene (better habits), various medications, even birth control pills to regulate hormone fluctuation. Nothing really had much of an impact. Finally after a few years of this, we decided on a sleep medication, one that is normally only prescribed for short periods of time. In other words, it's habit-forming.
Now, with the medication, I do sleep between 5-7 hours a night. But if for some reason I run out of the meds, as I did this week, I just don't sleep. The rotator cuff pain, and no meds added up to three nights in a row without sleeping at all. I lay in bed, doing the breathing exercises I've been taught, watching the cat do his nocturnal thing, but feeling the whips of adrenaline lashing through my body. Because this is what is keeping me awake: my endocrine system is whacked out in such a way that the adrenaline just doesn't turn off. I can feel it squirting through my system--sometimes it makes my limbs jump, or my teeth grind. My body is getting the alarm! signal. The hardest part is fighting off the fear--it is not called "fight or flight" for nothing. The adrenaline surges can trigger panic, anxiety, paranoia or just plain fear, even when there is no objective cause. Knowing this helps me manage it, but sometimes I'm so tired, so mentally exhausted with being AWAKE! that I just want it all to stop.
I finally slept last night (my Rx arrived in the mail!).
Tuesday, November 28, 2006
Limits
Yesterday I had a piano lesson. I love my piano lessons, but yesterday's was tough.
I have been diagnosed with "rotator cuff impingement" syndrome which means, for the moment, that the left side of my upper body hurts like the dickens. I'm getting physical therapy, but I have been told not to do certain movements, and that I must collaborate in my healing by faithfully doing what the Physical Therapist recommends! So piano practice has been limited to right hand only, and I am working on observing how I sit, move, breathe and perform all kinds of basic actions in order to begin healing. As this situation is a result of an underlying chronic pain condition, I know there will be no quick fix, but I also know that healing is possible.
So I will have to seek inspiration in the playing of others for the moment.Hhere is a wonderful story about the "Mozart Project" that I heard on NPR yesterday while I was driving home, wondering if I'd have to give up my dream of playing the piano again. It was so inspiring to hear these two musicians converse about the experience of playing together and working together on this wonderful music.
Then, of course, I could learn to play Mozart by other means:
I have been diagnosed with "rotator cuff impingement" syndrome which means, for the moment, that the left side of my upper body hurts like the dickens. I'm getting physical therapy, but I have been told not to do certain movements, and that I must collaborate in my healing by faithfully doing what the Physical Therapist recommends! So piano practice has been limited to right hand only, and I am working on observing how I sit, move, breathe and perform all kinds of basic actions in order to begin healing. As this situation is a result of an underlying chronic pain condition, I know there will be no quick fix, but I also know that healing is possible.
So I will have to seek inspiration in the playing of others for the moment.Hhere is a wonderful story about the "Mozart Project" that I heard on NPR yesterday while I was driving home, wondering if I'd have to give up my dream of playing the piano again. It was so inspiring to hear these two musicians converse about the experience of playing together and working together on this wonderful music.
Then, of course, I could learn to play Mozart by other means:
Wednesday, October 04, 2006
Broken column

Professor Zero calls our attention to the uncovering of a monolith of the diety Tlaloc in Mexico City, very near the Museo del Templo Mayor, (explore the museum with this virtual tour). This is a major archaeological find, and part of the ongoing re-interpretation of Mexico.
Twenty-nine years ago, while excavating for a new metro station next to the Cathedral, a monolithic image was uncovered, a massive stone disc carved with a representation of the dismembered body of the Moon Goddess, Coyolxauhqui. It turned out to be part of the Great Temple (the Templo Mayor) long thought to be underneath the Cathedral itself.
The archaeolgoical dig, the image of a woman's broken body, bring to mind Frida Kahlo's painting The Broken Column. Another revelation in Mexico City: last year, a room that had remained closed for over fifty years was opened in the Casa Azul. Apparently, Dolores Olmedo had given orders that the door was to remain locked, and it did until her death in 2002, and until a new museum director asked what was behind it. It was a bathroom used to store a host of objects and most of Frida's clothing, now being restored. Someo of the other objects found inside include hundreds of photographs taken by Frida's father, a pair of earrings given to her by Picasso, her prosthetic leg, her pain medications, the various corsets she had to wear after her many operations.
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