I was driving on the turnpike the other day. Not much going on, my mind looking for things to notice or think about. I was in the left lane, folks behind me, so it was time to get back into the right lane. I turned on my signal, moved the steering wheel slightly and the car just glided over into the right lane.
What a cool thing is that?, I thought. I barely have to maneuver the car for it to do that. I never thought of how easy it is to manage my car. And how manageable and agreeable it is to being maneuvered.
That started me thinking about other things that I rarely if ever think about, or maybe even notice.
How cool is it that someone speaks to you and immediately your brain translates the words into understanding? And how cool that my reply comes instantaneously?
How cool is it that a nose, a mouth and 2 eyes can be the same and just different enough that almost none of us look exactly like anyone else. How cool is it that each of us have faces so individualized and recognizable?
How cool is that that I can write an email and someone halfway across the world can read what I write in just a few seconds' time?
How cool is it that someone who plays a musical instrument can translate the musical signs and notes, send them down to their fingers, and play an instrument? Or for a singer, can translate and without active thought instruct the voicebox to make the different notes?
How cool is it that pets can understand their names and become members of the family even though they are 'just' animals?
How cool is it that one day we can be sick as a dog from some little tiny germ and then within a few days feel as though we had never been sick?
How cool is it that there are all kinds of life that are so tiny we cannot see them but they still have ways of letting us know they are there?
Funny. It was the car that gave me the one thought but each additional one led me into the path of another. And how cool is that?
These are just the ones I can think of at the moment. What makes you go, wow, isn't that amazing?
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 c. Show all posts
Showing posts with label c. Show all posts
Saturday, June 18, 2011
Monday, May 23, 2011
Description that evades me.
I have brown hair and brown eyes. I am short and a little overweight. I like dogs even though I have cats. My political beliefs lean towards liberal. I am Caucasian. I am a US citizen, born in Pennsylvania. I rarely get dressed up and hate wearing heels. I could go on but you have a fair idea of me from that description. Am I leaving anything out?
Oh. Yes. The dreaded "D" word. The word I try never to use. I am disabled. Why is that so hard for me to include? (As I write it my breath catches in my throat, I swallow, hard, my stomach clenches up.)
I hesitate whenever I fill out a form, any form, even medical. All the answers come easily: phone number, address, name, date of birth. Then the one that stumps me. 'Occupation' Oh no. I have to write disabled. There is no choice with the answer, but it is only very recently that I stopped putting the parenthetical extension,(at present).
An earlier post refers to the difficulty I have when talking about the pain. My fingers start to hesitate at the keys even as I write the words here.
Pain caused very weird things to happen. Brain surgery was for someone with tumors or something horrendous. It was an astonishment to me that 'only' pain brought the neurosurgeon into my hospital room and into my brain. Disabled also has its very specific niche, one that does not include the foreign invader into my life called trigeminal neuralgia, the face the only part of my body involved. Disabled means the body.
I discriminate not between mind and body but rather above the neck and below the neck. My disability does not stop me from walking, moving, or physically being able to do the things a body needs to do. It never has, not in the sense of inability to use my limbs and get around. My body always was ready to go. It was the face that said "No. there is a breeze, or cold, or wind, or rain, or, or, or." I think being 'able', absent the pain, has always made it harder to accept my inability to work and be a real participant in life.
I do not accept the pain. Not a day has gone by, not one in the 30 years and counting (except for the wonderful, fantastic 3 months when the first surgery worked and the pain was gone) where I have not awakened and expected that today is the day. No more pain, I can look for work, I can do anything. No, strike that. It is the day I can do everything.
Instead each day is another day I am disabled. Now that I have written it here maybe it will be easier to write it elsewhere.
Oh. Yes. The dreaded "D" word. The word I try never to use. I am disabled. Why is that so hard for me to include? (As I write it my breath catches in my throat, I swallow, hard, my stomach clenches up.)
I hesitate whenever I fill out a form, any form, even medical. All the answers come easily: phone number, address, name, date of birth. Then the one that stumps me. 'Occupation' Oh no. I have to write disabled. There is no choice with the answer, but it is only very recently that I stopped putting the parenthetical extension,(at present).
An earlier post refers to the difficulty I have when talking about the pain. My fingers start to hesitate at the keys even as I write the words here.
Pain caused very weird things to happen. Brain surgery was for someone with tumors or something horrendous. It was an astonishment to me that 'only' pain brought the neurosurgeon into my hospital room and into my brain. Disabled also has its very specific niche, one that does not include the foreign invader into my life called trigeminal neuralgia, the face the only part of my body involved. Disabled means the body.
I discriminate not between mind and body but rather above the neck and below the neck. My disability does not stop me from walking, moving, or physically being able to do the things a body needs to do. It never has, not in the sense of inability to use my limbs and get around. My body always was ready to go. It was the face that said "No. there is a breeze, or cold, or wind, or rain, or, or, or." I think being 'able', absent the pain, has always made it harder to accept my inability to work and be a real participant in life.
I do not accept the pain. Not a day has gone by, not one in the 30 years and counting (except for the wonderful, fantastic 3 months when the first surgery worked and the pain was gone) where I have not awakened and expected that today is the day. No more pain, I can look for work, I can do anything. No, strike that. It is the day I can do everything.
Instead each day is another day I am disabled. Now that I have written it here maybe it will be easier to write it elsewhere.
Wednesday, May 18, 2011
How do you know the wind blows?
I was watching an episode of House. He believed a patient had a growth so immensely tiny that it did not show up on any tests. House wanted his team to remove the unseen growth. (Let's act as though the show makes sense.) Dr. Foreman, his associate, responded "How can we remove something that we don't know is there and is so small it cannot be seen?" House replies "How do you know the wind is real?" Foreman: "You see the effects of it blowing."
I immediately thought of the analogy to those of us who live with chronic pain.
"Doctor, I fell and hurt my leg." "I saw the x-ray, the bone is broken." "Doctor, I am always thirsty and always having to urinate." "I saw the test results, you have diabetes."
vs.
"Doctor, I have pain all the time in my leg and arms." "Your tests show nothing wrong." "Doctor, I have horrendous facial pain. It is there all the time plus it comes on for no reason at all." "I see nothing when I examine you. All your tests are normal."
Lupus, multiple sclerosis, rheumatoid arthritis, among others, do have tests available that will provide objective results. Other pain disorders, like fibromyalgia, or RSD (CRPS) do not. (There is some controversy over whether a fibromyalgia body point tenderness scale is valid or not.)
I do not blame the doctors, at least for the first reaction of 'I cannot help what I do not see is there.' I do blame them when they ignore the effects of the invisible complaint.
People with RSD (CRPS) and fibromyalgia may limp, or have fatigue to a higher level than most, they cannot do what they used to do. Those are symptoms.
I could not touch or tolerate any touch to the area of my face involved in the pain. I flinched when there was any possibility of touch to the pained area. Unable to wash, dirt built up around the eye and on the forehead. I had a dirty orangish brown 1/2 inch mass of soap residue and environmental dirt. (The latter not subjective but the result of my 'subjective' complaint that touch was inordinately painful.)
Yes, sometimes a limp can be faked. Sometimes, a person is dirty. Sometimes fatigue is the result of depression or burning the candles at both ends. But sometimes the limp is protecting the leg from pain, the dirt crusting from being unable to touch, the fatigue because pain refuses to allow for rest or sleep.
How do you know the pain is there? How do you know the wind blows? Look at the effects.
I immediately thought of the analogy to those of us who live with chronic pain.
"Doctor, I fell and hurt my leg." "I saw the x-ray, the bone is broken." "Doctor, I am always thirsty and always having to urinate." "I saw the test results, you have diabetes."
vs.
"Doctor, I have pain all the time in my leg and arms." "Your tests show nothing wrong." "Doctor, I have horrendous facial pain. It is there all the time plus it comes on for no reason at all." "I see nothing when I examine you. All your tests are normal."
Lupus, multiple sclerosis, rheumatoid arthritis, among others, do have tests available that will provide objective results. Other pain disorders, like fibromyalgia, or RSD (CRPS) do not. (There is some controversy over whether a fibromyalgia body point tenderness scale is valid or not.)
I do not blame the doctors, at least for the first reaction of 'I cannot help what I do not see is there.' I do blame them when they ignore the effects of the invisible complaint.
People with RSD (CRPS) and fibromyalgia may limp, or have fatigue to a higher level than most, they cannot do what they used to do. Those are symptoms.
I could not touch or tolerate any touch to the area of my face involved in the pain. I flinched when there was any possibility of touch to the pained area. Unable to wash, dirt built up around the eye and on the forehead. I had a dirty orangish brown 1/2 inch mass of soap residue and environmental dirt. (The latter not subjective but the result of my 'subjective' complaint that touch was inordinately painful.)
Yes, sometimes a limp can be faked. Sometimes, a person is dirty. Sometimes fatigue is the result of depression or burning the candles at both ends. But sometimes the limp is protecting the leg from pain, the dirt crusting from being unable to touch, the fatigue because pain refuses to allow for rest or sleep.
How do you know the pain is there? How do you know the wind blows? Look at the effects.
Tuesday, May 3, 2011
Innocent until proven guilty?
Faking It: Why Nearly 1 in 4 Adults Who Seek Treatment Don't Have ADHD
http://healthland.time.com/2011/04/28/faking-it-why-nearly-1-in-4-adults-who-seek-treatment-dont-have-adhd/#ixzz1LJ4hkfXH
I just saw this article this morning. It captured my attention because all you need do is change the term ADHD to chronic pain.
It is not necessarily that the statistics would be borne for those with CIP diagnosis(ses) but that this is the argument put forward about treating those in chronic pain with opiate medication.
There will always be 'fakers', especially when it comes to medical disorders where the treatment is one desired by those who think it is 'fun' or necessary for their success to be 'high' or 'stimulated' artificially.
The regulators and naysayers say that those in real need need to be taken less seriously and treated as though they may be abusers. Signing a contract to agree to 'random urine' tests, not 'doctor shop', be unable to get more medication if you lose it or forget to bring it with you, say on a trip, implies that we are using the medications for 'illicit' purposes.
Whatever happened to innocent until proven guilty?
When one in 4 may fake ADHD to get stimulants and when there is a growing prescription drug abuse problem is the way to fix it to go after those who are legitimately in need of these medications?
I do not know where I stand on the issue. I do know that I am a patient, not a faker, and it is not fair to lump us all in one basket that presumes abuser.
http://healthland.time.com/2011/04/28/faking-it-why-nearly-1-in-4-adults-who-seek-treatment-dont-have-adhd/#ixzz1LJ4hkfXH
I just saw this article this morning. It captured my attention because all you need do is change the term ADHD to chronic pain.
It is not necessarily that the statistics would be borne for those with CIP diagnosis(ses) but that this is the argument put forward about treating those in chronic pain with opiate medication.
There will always be 'fakers', especially when it comes to medical disorders where the treatment is one desired by those who think it is 'fun' or necessary for their success to be 'high' or 'stimulated' artificially.
The regulators and naysayers say that those in real need need to be taken less seriously and treated as though they may be abusers. Signing a contract to agree to 'random urine' tests, not 'doctor shop', be unable to get more medication if you lose it or forget to bring it with you, say on a trip, implies that we are using the medications for 'illicit' purposes.
Whatever happened to innocent until proven guilty?
When one in 4 may fake ADHD to get stimulants and when there is a growing prescription drug abuse problem is the way to fix it to go after those who are legitimately in need of these medications?
I do not know where I stand on the issue. I do know that I am a patient, not a faker, and it is not fair to lump us all in one basket that presumes abuser.
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