I was in the shower this morning, washing my face. Suddenly, a bubble appeared; round, pretty glints of green and blue emanating from it. It was so unexpected, so much fun, I laughed outloud. The feeling of joy stayed with me for a few minutes. I keep the memory of that bubble with me. I bring it out when I start to feel low.
It is these joy filled moments that help us through the not so much fun day, hours, minutes. You do not have to be in pain to know the importance of having a 'security blanket", something that helps recapture that fleeting moment; a memento, a sensation, even a smell or taste.
When we were little, most of us had a blankie, or something else that we kept with us to hold onto in those moments when a stranger approached or we entered an unknown place or situation, when we felt unsettled or arfraid, when we just needed the feeling of a known comfort.
Why not have a blankie now?
It may sound silly but it is easy to do and no one else need know you even have it.
Think about it - what is your secret 'this is what makes me feel good' thing': a blanket, the feel of silk or a down comforter? Maybe it is a stuffed animal or a toy. Is it the smell of coffee, a certain spice, the scent of an orange or even a baby?
You can make a list and keep that with you, the words, the feel of the paper, evoking the memory. I remember a certain song or show I have seen. On occasion that is enough to make me feel better. Sometimes more is necessary.
It is not hard to do it.
Find yourself a small piece of the material, cut up an old shirt or a tiny snippet of a blanket. If that is not comfortable for you or doable find a store that sells fabrics. You can buy just a a foot, if they are nice they might let you buy just a few inches (if they're really nice maybe they will even give it to you.). Many dollar stores, thrift shops, toy stores sell tiny stuffed animals, small enough to fit in a back pocket or a purse. Take a small plastic bag and fill it with a teaspoon of coffee, chocolate, cinnamon, whatever you like. You can put in baby powder or orange zest. You get the idea. Anything that you can feel, or open and get a whiff, smelling it directly or discreetly putting it on your finger and smelling the tip.
I am sure some of your lists are a lot longer or different. Whatever it is for you, the feel, the smell, the sometimes just knowing it is there, is enough to give you the feeling of comfort.
It is funny. Many of us suggest to others or have had suggested to us that we keep a journal, write a diary, keep a list of the pain trigger; when it happens, when is it worse, when is it better.and so on.
Often forgotten is the need to write or have a list of what makes us feel good, when it happens, what triggered it, how can we replicate it.
Maybe this has given you some ideas for your own "this makes me feel good" moments. Please add your own. And pass it on.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Showing posts with label CRSP. Show all posts
Showing posts with label CRSP. Show all posts
Monday, October 1, 2012
Saturday, January 28, 2012
YOUR DOC. WHAT, AND WHO, SHOULD DETERMINE HIS PAY?
"The federal government's Centers for Medicare and Medicaid Services is finalizing a new reimbursement plan ...Under the proposed rule, adherence to quality care measures will be weighted at 70 percent of the payment formula. Patient satisfaction surveys will account for the remaining 30 percent. "
Is this fair?
If the ratings are based on willingness to communicate rather then just walk in, essentially ignoring you as she does 2, 3 other things (I had a doc who was on the phone the whole time he was supposedly listening to me and why I was there.) that is a good idea.
If it is based on knowing you and your history (if a first time visit, actually examining you, not just a cursory listen to your lungs and heart.) that is a good variable.
Does the doc have the ability to empathize? Does she actually "get" what you tell her, does she understand the level of pain you are in? Does she believe you? If she doesn't is she honest enough to say "I cannot help you." and offer to find a doctor who might?
Does she see you not as a patient but as potential criminal, malingerer, drug abuser? Is her attitude one of working with you or against you (your pain isn't real, it is not as bad as you say, etc.)?
Does she see you as money in her account? She has not been able to help you but continues to insist you come back, again and again, holding out the hope of 'the next visit' will be the one where she has the idea that will help you?
When I googled 'medicare payment tied to patient satisfaction' I came across an article written by a doctor. He wrote that he did not think it was a good idea because it will result in giving patients whast they want rather then what they need.
A site for student doctors agreed with that. Most cast patients as stupid, people who would give them a good rating only if they started "recommending Big Macs and Hot fudge Sundaes to everyone." ("http://forums.studentdoctor.net/showthread.php?t=819156)
One other big complaint: patients would want opiods and rate the doc bad if they did not get them. Chronic pain and chronic pain patients seemed to get the most ire from these docs and students.
I have stayed with docs who were awful and I have had docs that I wish had not retired or moved, docs I would literally lay down in the street for and say "Go ahead." to whatever they suggest.
Should those good docs get paid more? They had good communication skills, empathy, decency. I have also had awful docs who had these skills. And a few, very few, docs who would score very low on these qualities but high on the 'helped me' scale.
What are the qualities that make a doc good, that cause his patients to give him a good rating?
If he has these qualities and if I paid him out of my own pocket would I be willing to pay him more?
It is definitely a question worthy of discussion.
Is this fair?
If the ratings are based on willingness to communicate rather then just walk in, essentially ignoring you as she does 2, 3 other things (I had a doc who was on the phone the whole time he was supposedly listening to me and why I was there.) that is a good idea.
If it is based on knowing you and your history (if a first time visit, actually examining you, not just a cursory listen to your lungs and heart.) that is a good variable.
Does the doc have the ability to empathize? Does she actually "get" what you tell her, does she understand the level of pain you are in? Does she believe you? If she doesn't is she honest enough to say "I cannot help you." and offer to find a doctor who might?
Does she see you not as a patient but as potential criminal, malingerer, drug abuser? Is her attitude one of working with you or against you (your pain isn't real, it is not as bad as you say, etc.)?
Does she see you as money in her account? She has not been able to help you but continues to insist you come back, again and again, holding out the hope of 'the next visit' will be the one where she has the idea that will help you?
When I googled 'medicare payment tied to patient satisfaction' I came across an article written by a doctor. He wrote that he did not think it was a good idea because it will result in giving patients whast they want rather then what they need.
A site for student doctors agreed with that. Most cast patients as stupid, people who would give them a good rating only if they started "recommending Big Macs and Hot fudge Sundaes to everyone." ("http://forums.studentdoctor.net/showthread.php?t=819156)
One other big complaint: patients would want opiods and rate the doc bad if they did not get them. Chronic pain and chronic pain patients seemed to get the most ire from these docs and students.
I have stayed with docs who were awful and I have had docs that I wish had not retired or moved, docs I would literally lay down in the street for and say "Go ahead." to whatever they suggest.
Should those good docs get paid more? They had good communication skills, empathy, decency. I have also had awful docs who had these skills. And a few, very few, docs who would score very low on these qualities but high on the 'helped me' scale.
What are the qualities that make a doc good, that cause his patients to give him a good rating?
If he has these qualities and if I paid him out of my own pocket would I be willing to pay him more?
It is definitely a question worthy of discussion.
Monday, January 2, 2012
HAPPY NEW YEAR
I hope you had a good holiday and that the new year will be a good one for you.
My wish for all of us is less pain when possible and easier days all year.
To all my readers, old, new, and future, I am glad you found the blog.
My wish for all of us is less pain when possible and easier days all year.
To all my readers, old, new, and future, I am glad you found the blog.
Thursday, November 24, 2011
Thanks giving.
The holidays are such a weird time for me.
On the one hand, I leave the way my family treated me, and ultimately abandoned me, behind me most of the time. When I think about considering more surgery for the stimulator or when I fell in the street and had no one to call, of course they come to mind; and the way they treated me comes tagging alone; but mostly they are not there.
My aloneness and lonliness is a part of my Thanksgiving and Christmas just as much as a Christmas tree, turkey and stuffing or presents are for most people.
My nephew, the one person brave enough to brave his family and get to know me, came to visit a few days ago, as he has for the last couple of years whenever he is in town. It is my one visitor, the person I can call family, My excitement and delight over the visit is palpable.
In church the ministers talk about family and the holiday. Last Sunday one talked about everyone having someone to be with. That is not me. Later I tell him that, but feel I am not heard. Honestly, there is nothing he can do about it anyway.
My friend who moved to NY suggests I go to the dinner they have at the church, provided by the food pantry. I am suspect but one year decide to go. It was as I worried, a group of people, each alone, many looking perplexed or depressed, even angry. I feel they are glad to have this meal and this place, but I know staying would only aggravate all of my feelings about the holiday.
I feel some, all(?), at the dinner may not have family. The people who are supposed to be mine live 15 and 35 minutes away but that is, in reality, a galaxy of distance.
They say the opposite of love is not hate, it is indifference. That is what it is, not only now but essentially always.
A memory comes to mind. I was at the dinner table. We had a family table but it did not work as they advertise.
I was maybe 8. I wanted one of them, some of them, to acknowledge I was there. To give presence to my invisibility.
"I bought some candy." I pipe up. "It's in penny candy jars in my room, just like in a candy store. Come to my room and buy some, just for a penny, okay? You can get some and visit me." I implore. My child's heart and soul thinks candy will work, like at a store. Or maybe more apt, a dog. Hold out a treat and they will come to you and be your friend.
They do not come. The canisters stay full. I do not eat the sweets, thinking Maybe today. Maybe today they will come and talk to me.
The house was built to reinforce the separation. My 2 sisters and brother had their rooms at one end. My parents and I were at the other. In between was a playroom, a dining room, a living room and a corridor. It was as though it was 2 separate homes.
We came together for dinner, for passover sedars and Thanksgiving, Christmas, and easter breakfasts and dinners. At one point my one sister took me to work with her: we were friends. The other sister and I double date and then, whoosh, it is gone, and I am persona non grata.
For a number of years I was invited to Thanksgiving at one sister's and Christmas at another but that was it. And then even that stopped. No rhyme, no reason.
So.
I have a nephew. Family. More then many people have, even if only by one.
I have a roof over my head and and at least for the immediate present, funds to pay for it.
I can walk and talk, and see, and feel, and think. The last surgery I had there was a chance that would not be so. I am doubly grateful for a body that works.
I am always grateful and thankful for the Miracle. I can wash my face and go outside even with the wind, or cold, or breeze. It is consistently overwhelming. I do not want to think about when I could not do those things, what it felt like, but I do not have to remember the horror of that pain to know the wonder of being able to do them now.
I do have friends. I may almost never see them but I talk with them online or the phone, very often.
There is a lot to be thankful for: it is Thanksgiving.
It hurts. I cannot say it does not, to be alone for the holidays. But it is also a time for me to be very full of thanks. I work to hold onto that. I think for a good part of the time I am successful. And for that too I am thankful.
On the one hand, I leave the way my family treated me, and ultimately abandoned me, behind me most of the time. When I think about considering more surgery for the stimulator or when I fell in the street and had no one to call, of course they come to mind; and the way they treated me comes tagging alone; but mostly they are not there.
My aloneness and lonliness is a part of my Thanksgiving and Christmas just as much as a Christmas tree, turkey and stuffing or presents are for most people.
My nephew, the one person brave enough to brave his family and get to know me, came to visit a few days ago, as he has for the last couple of years whenever he is in town. It is my one visitor, the person I can call family, My excitement and delight over the visit is palpable.
In church the ministers talk about family and the holiday. Last Sunday one talked about everyone having someone to be with. That is not me. Later I tell him that, but feel I am not heard. Honestly, there is nothing he can do about it anyway.
My friend who moved to NY suggests I go to the dinner they have at the church, provided by the food pantry. I am suspect but one year decide to go. It was as I worried, a group of people, each alone, many looking perplexed or depressed, even angry. I feel they are glad to have this meal and this place, but I know staying would only aggravate all of my feelings about the holiday.
I feel some, all(?), at the dinner may not have family. The people who are supposed to be mine live 15 and 35 minutes away but that is, in reality, a galaxy of distance.
They say the opposite of love is not hate, it is indifference. That is what it is, not only now but essentially always.
A memory comes to mind. I was at the dinner table. We had a family table but it did not work as they advertise.
I was maybe 8. I wanted one of them, some of them, to acknowledge I was there. To give presence to my invisibility.
"I bought some candy." I pipe up. "It's in penny candy jars in my room, just like in a candy store. Come to my room and buy some, just for a penny, okay? You can get some and visit me." I implore. My child's heart and soul thinks candy will work, like at a store. Or maybe more apt, a dog. Hold out a treat and they will come to you and be your friend.
They do not come. The canisters stay full. I do not eat the sweets, thinking Maybe today. Maybe today they will come and talk to me.
The house was built to reinforce the separation. My 2 sisters and brother had their rooms at one end. My parents and I were at the other. In between was a playroom, a dining room, a living room and a corridor. It was as though it was 2 separate homes.
We came together for dinner, for passover sedars and Thanksgiving, Christmas, and easter breakfasts and dinners. At one point my one sister took me to work with her: we were friends. The other sister and I double date and then, whoosh, it is gone, and I am persona non grata.
For a number of years I was invited to Thanksgiving at one sister's and Christmas at another but that was it. And then even that stopped. No rhyme, no reason.
So.
I have a nephew. Family. More then many people have, even if only by one.
I have a roof over my head and and at least for the immediate present, funds to pay for it.
I can walk and talk, and see, and feel, and think. The last surgery I had there was a chance that would not be so. I am doubly grateful for a body that works.
I am always grateful and thankful for the Miracle. I can wash my face and go outside even with the wind, or cold, or breeze. It is consistently overwhelming. I do not want to think about when I could not do those things, what it felt like, but I do not have to remember the horror of that pain to know the wonder of being able to do them now.
I do have friends. I may almost never see them but I talk with them online or the phone, very often.
There is a lot to be thankful for: it is Thanksgiving.
It hurts. I cannot say it does not, to be alone for the holidays. But it is also a time for me to be very full of thanks. I work to hold onto that. I think for a good part of the time I am successful. And for that too I am thankful.
Thursday, October 20, 2011
Bizarroworld. (Saw the company rep.)
I went to the neurosurgeon's office yesterday for the appointment, mostly to meet with the representative from the company that makes the implant.
Right now I do not feel like writing much about it and, truth to tell, there is not much to say, at least for now. It is also hard to wrote about because it requires a lot of explanation for many of the steps that were taken.
It appears that something is wrong with the unit but the information that the main computer is giving does not make sense.
It looks like my company rep will have to contact an engineer at the company to see if they can explain what right now is making no sense. (On the one hand I am having the errant sensations from the implant but on the other hand the main computer is indicating that there is a break in a wire somewhere which means I should not be feeling any stimulation at all.).
It is a bizarreness that has to wait for the end of this chapter to be written.
Bummer.
Right now I do not feel like writing much about it and, truth to tell, there is not much to say, at least for now. It is also hard to wrote about because it requires a lot of explanation for many of the steps that were taken.
It appears that something is wrong with the unit but the information that the main computer is giving does not make sense.
It looks like my company rep will have to contact an engineer at the company to see if they can explain what right now is making no sense. (On the one hand I am having the errant sensations from the implant but on the other hand the main computer is indicating that there is a break in a wire somewhere which means I should not be feeling any stimulation at all.).
It is a bizarreness that has to wait for the end of this chapter to be written.
Bummer.
Monday, October 10, 2011
What am I?
I was at the Occupy Philadelphia rally last week. A reporter, Sara, and I talked, and she decided she would interview me. (She was from CNN. I don't know if the interview was shown or not.)
The camerawoman turned on the camera and Sara took out her reporter's notebook.
"What is your name?" I answered that one easily.
Then the question that always stumps me. (I think I have written about this before, either here or at the old Women In Pain Awareness site so please bear with me if I am repeating myself somewhat. Age, you know, is my joke but it is more what my friend always says of me, "You never learn your lesson.")
"What do you do?"
I thought for a second. Did my usual hemming and hawing dance, more inside my head then vocally, I hope.
Then I said "I am disabled."
I hate saying that. Those of us with pain or other invisible disabilities fear the look that we sometimes get, the one that says 'Oh yeah, sure, I see how disabled you are. (In fact there have been 2 comments recently under the post Pain vs. Cancer. The commenter lets me know very loudly how untrue chronic pain is as a disease and how we are all nothing but drug users, lazy, etc. - Please feel free to reply to him.) Sara had no response to that, nor did I see disbelief in her face (but she is a reporter, trained not to show reactions.)
I stayed at the rally as long as I could then took the train to get back to my house. As I rode along, I thought about the interview. And emotionally kicked myself.
An online friend and fellow pain sufferer said, a long time ago, you (meaning me and disabled others in general) are much more than your disability. You are mothers and daughters, writers and singers, students and teachers. Disability is a small part of who you are as a person.
She was right. I should have said I was an author, or hypnotherapist, or teacher.
I am published and even though I rarely see clients or teach, I am and do both of those as well.
My life revolves around the things I cannot do. The things I can do fade in the background.
Maybe by letting them fade I make myself less, not only to the world but to myself. And maybe that is one of the biggest disservices I do to me.
The camerawoman turned on the camera and Sara took out her reporter's notebook.
"What is your name?" I answered that one easily.
Then the question that always stumps me. (I think I have written about this before, either here or at the old Women In Pain Awareness site so please bear with me if I am repeating myself somewhat. Age, you know, is my joke but it is more what my friend always says of me, "You never learn your lesson.")
"What do you do?"
I thought for a second. Did my usual hemming and hawing dance, more inside my head then vocally, I hope.
Then I said "I am disabled."
I hate saying that. Those of us with pain or other invisible disabilities fear the look that we sometimes get, the one that says 'Oh yeah, sure, I see how disabled you are. (In fact there have been 2 comments recently under the post Pain vs. Cancer. The commenter lets me know very loudly how untrue chronic pain is as a disease and how we are all nothing but drug users, lazy, etc. - Please feel free to reply to him.) Sara had no response to that, nor did I see disbelief in her face (but she is a reporter, trained not to show reactions.)
I stayed at the rally as long as I could then took the train to get back to my house. As I rode along, I thought about the interview. And emotionally kicked myself.
An online friend and fellow pain sufferer said, a long time ago, you (meaning me and disabled others in general) are much more than your disability. You are mothers and daughters, writers and singers, students and teachers. Disability is a small part of who you are as a person.
She was right. I should have said I was an author, or hypnotherapist, or teacher.
I am published and even though I rarely see clients or teach, I am and do both of those as well.
My life revolves around the things I cannot do. The things I can do fade in the background.
Maybe by letting them fade I make myself less, not only to the world but to myself. And maybe that is one of the biggest disservices I do to me.
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