Friday I belatedly called for a refill of my pain medication. I went through automated systems and did not even confirm that the doctor's office had indeed authorized a refill (the prescription had no more refills authorized; the pharmacy had to fax a request to the doctor's office). Why did I wait until Friday afternoon and why did I not confirm? If the prescription were not refilled then I would have to make it through the weekend without it. I think that part of me wanted to see how I would manage.
Nevertheless, on Saturday morning I called the Costco pharmacy to see if the prescription was ready. And it was. I decided to take this opportunity to try driving again, and to pick up cat food and kitty litter while out.
I was surviving on no pain meds by the time I set out and had been in pain since I awoke. But still I thought I might do all right. Not so much. From getting into the car to pressing on the gas to moving to the brake pedal to getting out of the car it was nothing but pain. Not excruciating but damned uncomfortable. I managed to get to Costco, wait in line at the pharmacy (cursing the fact that they don't have a "take a number" system so I could just sit down on their bench), get the prescription, drive to PetCo, buy food and litter (plus the usual bag of cat food for the feline network, which was having an adoption day outside of the store), and even go to Vons to buy some groceries.
It was no picnic and by the time I got home I was very much ready to take some of that pain medication, which helped. I realized that 1) I am not yet ready to drive regularly and 2) I am not yet ready to go off the pain meds. It's disheartening but I must take deep breaths and accept where I am. I am just shy of five weeks from surgery and not progressing as quickly as I would like but there is no reason for me to expect that I won't get there.
Journal of experiences and experiments with arthritis
Sunday, November 6, 2011
Saturday, November 5, 2011
Five Things
Five things that changed my life as a patient, caregiver, or health activist. For better or worse. That's the challenge for today (see last line, below).
I am not much of a health activist, in my opinion, and yet I have worked to change my own life and sometimes to help others change theirs.
The first thing to come to mind in that respect was the book Mad in America, by Robert Whitaker. The first page of this book told me of a World Health Organization study that discovered that so-called schizophrenics fare far better in third-world countries than they do in the western world. The main factor that they found different in the treatment of these patients was that in these poor countries they did not have access to anti-psychotics. The schizophrenics in poor countries actually got better, whereas in the U.S., for example, we have come to think of them as permanently ill. I had long held that belief, too, that schizophrenia is incurable, only manageable. When I learned that this was not true, I began to delve further into the use of other drugs on patients called "mentally ill", including, especially, antidepressants. Ever since, I have campaigned against the lies, the misunderstandings, the so-called "conventional wisdom"about psych drugs. In at least one case, a woman who was using antidepressants, I have gotten through, while in many others I have encountered anger, rage, disbelief, unwillingness to consider the possibility that doctors don't always know what they are doing. It may be that this one book opened my mind to looking at the world a little differently, and with a great deal more cynicism and watchfulness.
My experience with arthritis may be another case. I first started having difficulty with my knees in my 30s. I went to the medical clinic and was told I had damaged something, they did not know how or what, but that physical therapy could help. The first time I entered the physical therapy department, which was relegated to the basement, I was amazed. I had no idea that these people actually existed, not in a conscious way, anyway. I remember thinking, with some joy, that these were the health professionals who do the real work, the hard work, and they are mostly unsung. I have continued to have that opinion since, and I have seen many physical therapists as part of my knee replacement therapy. I cannot say enough about these life-changing professionals. This is on-the-ground, real help. How often do we get that?
I suffered with migraines most of my life. My mother took me to an allergist as well as to other doctors, hoping to find a cause, but none was found. When I was young - seven is when they started, as I recall - the headaches would get so bad that I would throw up, then fall asleep, and when I woke I would feel better. As I got older the migraines changed, and as an older adult they sometimes lasted for several days, which was truly horrifying. I felt at times that I would welcome a bullet to the head. Several years ago I happened upon Oliver Sacks' book, Migraine. In this book I learned about the many kinds of migraines (I never had the visual effects but some people only get those, and no headache, but it's all part of the same thing), and the many different ways people are treated. Sacks discovered that when one treatment fixed the headache then the patient tended to have a problem elsewhere. It was as if it was just shoved to another part of the body. Ultimately, after exploring all of the ways migraines are treated (not to mention the interesting history of the condition), Sacks finally recommended taking two aspirins and lying down in a dark room. Just let the migraine have its way, don't fight it. This book certainly changed my mind about my headaches.
As a young adult I was depressive, to say the least. I fell into depressions frequently, sometimes suicidal. My stepmother recommended a book - A Guide to Rational Living, by Albert Ellis and others. The book suggests that we can control how we feel by controlling how we think. The idea seemed absurd to me at the time and my buddies and I had a lot of laughs about the concept. But still, I dipped into it. I read it. And it drew me in. Gradually it won me over. The basic idea behind what is now called "cognitive behavioral therapy" was born here, although Ellis gave it another name. The book is still in print, in an updated version (although much of the 70s language is still there, outdated but readable enough), which suggests that I was not the only one to be affected by it. This book, along with a therapy group I belonged to for one year (for free!), taught me the tools I needed to counteract depression when it started up. I did not immediately eliminate depression from my life but over time the incidents were fewer and fewer, and each time I knew what I had to do. I feel so sorry for those who have been told that they have no control over their depressions, that they must be on drugs all their lives. They are living half-lives, prisoners to the drug companies, when they could be as free as I am. This book and this group were life-changing for me. I believe strongly that we are much more powerful than many of us believe, that we do have the goods. We do not need to be victims. This point of view has colored the way I treat all health issues in my life. It is a major part of who I am now.
Years ago I worked with a "life coach" for a little while. I was trying to get other parts of my life in order. I told her that writing is important to me but I am not doing much with it. She found LiveJournal, the site where I could keep a journal online. Initially I used it to write spontaneously, just to write. But in time it became the place where I could pour out my feelings and thoughts, and thereby release them from inside me. It became a way for me to deal with issues in my life. Since then, I have always had some kind of journal (or "blog") and I write in them all the time. The act of writing about my feelings, both physical and emotional, has been immensely healing for me. In some cases, as with this journal, it is also a way to track how I have dealt with certain types of physical issues, to see if I am getting better. Writing this way has become a huge part of who I am.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am not much of a health activist, in my opinion, and yet I have worked to change my own life and sometimes to help others change theirs.
The first thing to come to mind in that respect was the book Mad in America, by Robert Whitaker. The first page of this book told me of a World Health Organization study that discovered that so-called schizophrenics fare far better in third-world countries than they do in the western world. The main factor that they found different in the treatment of these patients was that in these poor countries they did not have access to anti-psychotics. The schizophrenics in poor countries actually got better, whereas in the U.S., for example, we have come to think of them as permanently ill. I had long held that belief, too, that schizophrenia is incurable, only manageable. When I learned that this was not true, I began to delve further into the use of other drugs on patients called "mentally ill", including, especially, antidepressants. Ever since, I have campaigned against the lies, the misunderstandings, the so-called "conventional wisdom"about psych drugs. In at least one case, a woman who was using antidepressants, I have gotten through, while in many others I have encountered anger, rage, disbelief, unwillingness to consider the possibility that doctors don't always know what they are doing. It may be that this one book opened my mind to looking at the world a little differently, and with a great deal more cynicism and watchfulness.
My experience with arthritis may be another case. I first started having difficulty with my knees in my 30s. I went to the medical clinic and was told I had damaged something, they did not know how or what, but that physical therapy could help. The first time I entered the physical therapy department, which was relegated to the basement, I was amazed. I had no idea that these people actually existed, not in a conscious way, anyway. I remember thinking, with some joy, that these were the health professionals who do the real work, the hard work, and they are mostly unsung. I have continued to have that opinion since, and I have seen many physical therapists as part of my knee replacement therapy. I cannot say enough about these life-changing professionals. This is on-the-ground, real help. How often do we get that?
I suffered with migraines most of my life. My mother took me to an allergist as well as to other doctors, hoping to find a cause, but none was found. When I was young - seven is when they started, as I recall - the headaches would get so bad that I would throw up, then fall asleep, and when I woke I would feel better. As I got older the migraines changed, and as an older adult they sometimes lasted for several days, which was truly horrifying. I felt at times that I would welcome a bullet to the head. Several years ago I happened upon Oliver Sacks' book, Migraine. In this book I learned about the many kinds of migraines (I never had the visual effects but some people only get those, and no headache, but it's all part of the same thing), and the many different ways people are treated. Sacks discovered that when one treatment fixed the headache then the patient tended to have a problem elsewhere. It was as if it was just shoved to another part of the body. Ultimately, after exploring all of the ways migraines are treated (not to mention the interesting history of the condition), Sacks finally recommended taking two aspirins and lying down in a dark room. Just let the migraine have its way, don't fight it. This book certainly changed my mind about my headaches.
As a young adult I was depressive, to say the least. I fell into depressions frequently, sometimes suicidal. My stepmother recommended a book - A Guide to Rational Living, by Albert Ellis and others. The book suggests that we can control how we feel by controlling how we think. The idea seemed absurd to me at the time and my buddies and I had a lot of laughs about the concept. But still, I dipped into it. I read it. And it drew me in. Gradually it won me over. The basic idea behind what is now called "cognitive behavioral therapy" was born here, although Ellis gave it another name. The book is still in print, in an updated version (although much of the 70s language is still there, outdated but readable enough), which suggests that I was not the only one to be affected by it. This book, along with a therapy group I belonged to for one year (for free!), taught me the tools I needed to counteract depression when it started up. I did not immediately eliminate depression from my life but over time the incidents were fewer and fewer, and each time I knew what I had to do. I feel so sorry for those who have been told that they have no control over their depressions, that they must be on drugs all their lives. They are living half-lives, prisoners to the drug companies, when they could be as free as I am. This book and this group were life-changing for me. I believe strongly that we are much more powerful than many of us believe, that we do have the goods. We do not need to be victims. This point of view has colored the way I treat all health issues in my life. It is a major part of who I am now.
Years ago I worked with a "life coach" for a little while. I was trying to get other parts of my life in order. I told her that writing is important to me but I am not doing much with it. She found LiveJournal, the site where I could keep a journal online. Initially I used it to write spontaneously, just to write. But in time it became the place where I could pour out my feelings and thoughts, and thereby release them from inside me. It became a way for me to deal with issues in my life. Since then, I have always had some kind of journal (or "blog") and I write in them all the time. The act of writing about my feelings, both physical and emotional, has been immensely healing for me. In some cases, as with this journal, it is also a way to track how I have dealt with certain types of physical issues, to see if I am getting better. Writing this way has become a huge part of who I am.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
Friday, November 4, 2011
After Publication
Today's challenge (see note at the bottom of this post) is to write about what I do immediately after publishing a blog post.
* I look at it in published form, reread it. If I find mistakes, I correct them and republish.
* In the case of this blog, I check to see if it has published on Facebook yet. Networked Blogs is a reliable way to do this, I have discovered.
* When it is one of these "challenge" posts I post a link to it on WEGO Health. Then I "tweet" that one from that page.
* I move on to the next thing - which may mean I take a nap.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
* I look at it in published form, reread it. If I find mistakes, I correct them and republish.
* In the case of this blog, I check to see if it has published on Facebook yet. Networked Blogs is a reliable way to do this, I have discovered.
* When it is one of these "challenge" posts I post a link to it on WEGO Health. Then I "tweet" that one from that page.
* I move on to the next thing - which may mean I take a nap.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
Thursday, November 3, 2011
Dear 18-year-old me
The third prompt in the National Health Blog Post Month is to write to my 18-year-old self, advising myself on what to do more of, what less of, and what I have to look forward to in the next few years. It's rather a loaded prompt, this one. Which might mean it's worth doing.
Dear 18-year-old Judy,
You have graduated from high school and are looking forward to college. You dream of becoming a concert pianist. You know that you have not devoted as much effort to practice as you should have, although in the last four years you stepped it up. You have dreams.
Nobody disputes your intelligence, sense of humor, or musicianship. Where you tend to fall down is in the social world. You will find that college offers you friends, real friends, for the first time, that you feel like you are in the right place at last. College is, in many ways, a great time for you. You will become part of little groups of friends, sharing each other's ups and downs and even, at times, competing for members of the opposite sex.
This has always been a problem for you, in no small part because you are so large. You are not only tall, almost six feet, but also wide. And you are only just beginning to learn how to take care of your big body and clothing. You take showers regularly, wash your clothes more often. It takes a little longer for you to get more consistent in brushing your teeth, but you get there.
Is this too much information? For some, of course it is. But it's relevant.
I hope I can offer some advice. I know that you tend to become defensive and don't want to hear advice, but it's from you! Remember that! You turned out all right, honestly, but if you take this advice you might be able to avoid some of the difficulties along the way.
* First, gradually cut out the animal products. You will do this eventually, and if you do so now so much the better. You'll feel better and start to lose weight and it will be easier for you to lose that weight and keep some of it off. Keeping your weight down will help a lot in the degeneration that is arthritis. It is unlikely that you will avoid the disease entirely but it may never have to affect you severely.
* Take stock, leave fear behind. It wouldn't hurt for you to start looking at your fears and facing them, not just by themselves, but with knowledge. Learn about your fears. What are the chances of your worst nightmare happening? What if you make a fool of yourself from time to time? Will it end the world? Actually, it won't. I guarantee it. Other people are more interested in themselves and won't care if you try something new and fail at it. And if they do laugh at you, laugh with them. Laugh ahead of them. Face the fears head on and don't be afraid to face humiliation too.
* Get into some regular habits. Exercise - don't overdo it but do it regularly. Write - every morning or evening. Take time for yourself. Insist on it.
* Learn to ask for help. You may be able to do some things but often others can do them better and others actually like doing them. Ask. You may be surprised to learn that you are actually giving a gift when you do so.
You have many years of good work ahead. You will have children, who will be the lights of your life. You will have peak experiences and low ones. You'll fall and get up, again and again, and this will become your chief strength. Might as well get started now.
Love,
Your 65-year-old self
Dear 18-year-old Judy,
You have graduated from high school and are looking forward to college. You dream of becoming a concert pianist. You know that you have not devoted as much effort to practice as you should have, although in the last four years you stepped it up. You have dreams.
Nobody disputes your intelligence, sense of humor, or musicianship. Where you tend to fall down is in the social world. You will find that college offers you friends, real friends, for the first time, that you feel like you are in the right place at last. College is, in many ways, a great time for you. You will become part of little groups of friends, sharing each other's ups and downs and even, at times, competing for members of the opposite sex.
This has always been a problem for you, in no small part because you are so large. You are not only tall, almost six feet, but also wide. And you are only just beginning to learn how to take care of your big body and clothing. You take showers regularly, wash your clothes more often. It takes a little longer for you to get more consistent in brushing your teeth, but you get there.
Is this too much information? For some, of course it is. But it's relevant.
I hope I can offer some advice. I know that you tend to become defensive and don't want to hear advice, but it's from you! Remember that! You turned out all right, honestly, but if you take this advice you might be able to avoid some of the difficulties along the way.
* First, gradually cut out the animal products. You will do this eventually, and if you do so now so much the better. You'll feel better and start to lose weight and it will be easier for you to lose that weight and keep some of it off. Keeping your weight down will help a lot in the degeneration that is arthritis. It is unlikely that you will avoid the disease entirely but it may never have to affect you severely.
* Take stock, leave fear behind. It wouldn't hurt for you to start looking at your fears and facing them, not just by themselves, but with knowledge. Learn about your fears. What are the chances of your worst nightmare happening? What if you make a fool of yourself from time to time? Will it end the world? Actually, it won't. I guarantee it. Other people are more interested in themselves and won't care if you try something new and fail at it. And if they do laugh at you, laugh with them. Laugh ahead of them. Face the fears head on and don't be afraid to face humiliation too.
* Get into some regular habits. Exercise - don't overdo it but do it regularly. Write - every morning or evening. Take time for yourself. Insist on it.
* Learn to ask for help. You may be able to do some things but often others can do them better and others actually like doing them. Ask. You may be surprised to learn that you are actually giving a gift when you do so.
You have many years of good work ahead. You will have children, who will be the lights of your life. You will have peak experiences and low ones. You'll fall and get up, again and again, and this will become your chief strength. Might as well get started now.
Love,
Your 65-year-old self
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
Wednesday, November 2, 2011
Arthritis as sitcom? drama?
* Aqua classes are notorious for the chatter. The teacher has to struggle to be heard above all the conversation in the pool.
* People do get to know each other. My class often has potlucks, right by the pool. We've even had off-gym parties.
* There are a lot of Total Knee Replacement (aka TKR) patients in aqua classes. Every physical therapist and doc seems to recommend it as a safe exercise.
Thus I could envision a group of TKR people in an Aqua class. Some might be pre-surgery, some recent surgeries, some might have had the surgery years ago. There may be discussions about an upcoming surgery or comparisons of knees. The comparisons might even rise to the level of competition - I got to 125 degrees flex. How about you? Mine was 127, and my extension is better than zero! How long were you in therapy? Six weeks? I got out in four. I'm having a little trouble taking this anywhere that is really funny.
How about a drama? Perhaps a lifetime series? The Home. A short-term rehab home. Small, no more than 24 patients. Staff nurse (RN), several LVNs, various orderlies, several physical therapists and occupational therapists. I think there is potential here. This would spring from some of my experiences but would not really be my blog-turned-television, which means it doesn't meet the criteria well.
Or a television drama. One woman, years of frustration, loss of hope, finally the knee replacements. With information at the end about knee replacements, about arthritis support groups. There isn't a whole lot of drama in this scenario. We would need some sort of crisis to make it work.
Finally, a one-woman "dramedy". Perhaps a half-hour show. Woman in her sixties coping with life alone, visiting children, trying to stay out of sibling rivalries, going on trips alone, joining classes, meeting others, going to the gym. That's who I am, like it or not. Oh, with four cats - does that help? Might show how she manages various household chores with her arthritic knees, and how she gets her exercises in after knee surgery, how she responds to treatment, to physical therapy. This is closest to my blog so I'm taking it. Let's meet and discuss particulars before I start co-writing.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
A Turning Point?
I have been fretting because I am still dealing with a lot of pain, especially at night, and I have had difficulty even taking short walks without pain or other discomfort.
Yesterday my appt with the physical therapist was for 9:30 am. I was up and ready when he called to say he was having scheduling difficulties and could I reschedule for later? I said sure, I'm not going anywhere. We rescheduled for about noon. He called again later and rescheduled for 12:30 - 1:00, saying don't hate me if I get there a bit earlier or later than that. I said of course I won't. He arrived some time after one.
The extra time got me moving. I got the trash into the dumpster, the recycling into the bin, I swept the kitchen floor, watered plants on the porch, went for a short walk around my little block. I got up and moved around more and sat less. I worked in some knee exercises. By the time Wade arrived I was feeling pretty warmed up and ready to go. Among other things, we walked on the grass and broken concrete in the park across the street from my house, and as we neared the mailboxes I said shucks, I should have brought my key. Wade said that I could come back later, then! Which I did, after he left.
It is funny how I got locked into the idea that I would do this one little block walk and anything more would be too much. I know that doing too much increases inflammation, which is not good, but there are some spaces in between, windows of opportunity. I can do more than one walk per day! Somehow this idea has freed me, made me feel more capable and ready to go.
I still had a bad night last night, although not as bad as the worst. One time when I woke in pain and cried out "ow! ow! ow!" but otherwise mostly a matter of finding a comfortable way to rest. I took pain pills every four hours and I think that's good at this stage. When my knee hurts it hurts. There is a section on the left side of the knee and another on the right that are particularly sore, hurting. The one on the right appears to be a bruise. I have been bothered by that one since the beginning (right after surgery), and I wonder if there was maybe a little more force used to install the new knee than needed? The rest of the knee just generally hurts, and sometimes the pain goes down into the calf as well.
Right now I'm at about a two on that d**$%med universal scale of pain. Not bad. I will go for a little walk soon. My first of the day.
Yesterday my appt with the physical therapist was for 9:30 am. I was up and ready when he called to say he was having scheduling difficulties and could I reschedule for later? I said sure, I'm not going anywhere. We rescheduled for about noon. He called again later and rescheduled for 12:30 - 1:00, saying don't hate me if I get there a bit earlier or later than that. I said of course I won't. He arrived some time after one.
The extra time got me moving. I got the trash into the dumpster, the recycling into the bin, I swept the kitchen floor, watered plants on the porch, went for a short walk around my little block. I got up and moved around more and sat less. I worked in some knee exercises. By the time Wade arrived I was feeling pretty warmed up and ready to go. Among other things, we walked on the grass and broken concrete in the park across the street from my house, and as we neared the mailboxes I said shucks, I should have brought my key. Wade said that I could come back later, then! Which I did, after he left.
It is funny how I got locked into the idea that I would do this one little block walk and anything more would be too much. I know that doing too much increases inflammation, which is not good, but there are some spaces in between, windows of opportunity. I can do more than one walk per day! Somehow this idea has freed me, made me feel more capable and ready to go.
I still had a bad night last night, although not as bad as the worst. One time when I woke in pain and cried out "ow! ow! ow!" but otherwise mostly a matter of finding a comfortable way to rest. I took pain pills every four hours and I think that's good at this stage. When my knee hurts it hurts. There is a section on the left side of the knee and another on the right that are particularly sore, hurting. The one on the right appears to be a bruise. I have been bothered by that one since the beginning (right after surgery), and I wonder if there was maybe a little more force used to install the new knee than needed? The rest of the knee just generally hurts, and sometimes the pain goes down into the calf as well.
Right now I'm at about a two on that d**$%med universal scale of pain. Not bad. I will go for a little walk soon. My first of the day.
Tuesday, November 1, 2011
My Future Book
From time to time I consider writing a book. I have thought about writing simply about my life, about my experiences with my father, about health. I've thought about fiction, too. If I were to write a book about arthritis I would need to take into account:
* I am not a medical professional
* I am not an expert researcher
* I am insightful
* I have lived with it for a very long time
* I have learned a few things.
The book that makes the most sense is my own life experience, essentially turning this blog into a book. Possible titles:
30 Years with Arthritis
Know Your Knees
Arthur-who? Making Friends with Arthritis
Making the Leap Year After Year
Arthritis: Don't Let it Stop You
Synopsis:
Arthritis affects over half of the over-60 population. This degenerative disease takes on knees, ankles, wrists, shoulders, any joint in fact. And people deal with it in many different ways. Lautner's journey is longer than most: she started feeling pain in her knees while in her thirties, and watched it accelerate on into her 60s, when after many ups and downs and after trying many different methods for compensating for the damage, she finally went in for knee replacements. Follow her as she plunges into various exercise programs, changes in diet, and surgery and beyond, and learn something about fear, fitness, and starting over.
* I am not a medical professional
* I am not an expert researcher
* I am insightful
* I have lived with it for a very long time
* I have learned a few things.
The book that makes the most sense is my own life experience, essentially turning this blog into a book. Possible titles:
30 Years with Arthritis
Know Your Knees
Arthur-who? Making Friends with Arthritis
Making the Leap Year After Year
Arthritis: Don't Let it Stop You
Synopsis:
Arthritis affects over half of the over-60 population. This degenerative disease takes on knees, ankles, wrists, shoulders, any joint in fact. And people deal with it in many different ways. Lautner's journey is longer than most: she started feeling pain in her knees while in her thirties, and watched it accelerate on into her 60s, when after many ups and downs and after trying many different methods for compensating for the damage, she finally went in for knee replacements. Follow her as she plunges into various exercise programs, changes in diet, and surgery and beyond, and learn something about fear, fitness, and starting over.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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