I had a friend, who, every few years would find a reason to get mad at me. She would ratchet up the level of her anger and then suddenly announce "This friendship is over!" 2- 4 months later she would call me. "I went to the store the other day and bought a bunch of bananas." she would say or some other such triviality, as though there had been no breach.
Each time I was torn. It was wrong of her to behave as she had but my need for friendship overrode my commonsense. Each time I replied "Oh, were they ripe?" and continued the pretense. Then we would fall back into our old relationship until the next time she decided it was time to end it.
The last time she did this, a few years back, I realized I had to take her at her word. When she called me at the appointed time, 2 - 4 months later, I was cool to her. She called 2 more times before realizing I had agreed with her, the friendship was over.
It was a sad thing. We had been friends for about 15 years but sometimes reality needs to be acknowledged. The friendship had come to an end.
How often have we stayed with doctors, medications or agreed to continiuing therapies even though we knew they had proven not to be what we needed?
When I lived in NYC I started seeing a neurologist who did not always 'believe' in my pain and behaved in ways that seemed a little 'off' (to me). My Philadelphia neuroophthalmologist suggested I have a doctor in NY, and I knew no other one, so I felt stuck with this man. I stayed with him long past the time it was healthy for me to do so.
I get 'tics' from my anaesthesia dolorosa (phantom pain). Unlike my trigeminal neuralgia tics these were severe itching sensations, directly under my nose.
About a week ago I got one that was horrendous: itching, tingling, pulsating almost, just overwhelming and unbearable. Very few times have they been that bad. This one was worse because within a few seconds the whole side of my face was involved and then the side of my scalp as well. It was terrifying, the sensation 100fold the way the stimulation, which I rarely feel, feels.
Using the computer that came with the implant I made some changes.
The implant had been placed in 1991. Although now and again I would change the polarities (the plus and minus - like in a battery) and the amplitude (how much stimulation I got) I had never turned it off and never really played with it. (I have the main computer which most patients do not so I could do a lot more changes on my own.) This last pain forced me to reconsider how I used the implant.
I turned the stimulation level down and still got some of the tics. I turned it down further and got less and the intensity was less. I have it almost off and am getting less still and the sensation less.
It occurs to me that I have always been afraid to turn it off. I keep going back to it, to tweak and fiddle with, in hopes that the pain will be gone, or lessened, so I can use my eyes more (and work, always work - that hope has never left me). But, if I turn it off, that is it. There is no other therapy left to try, I must unconsciously think, as if turning it off means I have closed off all possibility of using it again. Of course that is not true. All I would have to do it is turn it back on.
The friend, the doc, the implant. How many times has the truth stared me in the face - do not go back, find another doc, turn it off - but it is more familiar to continue with what I know?
How often do we let fear stop us from doing what we know is the right thing to do?
How often do we welcome someone or something into our life, or back into our lives, because it is easier to do than looking the unknown in the face and saying, 'The heck with you fear'.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Monday, September 12, 2011
Thursday, September 8, 2011
Understanding pain and understanding pain
I know what it is like to have constant, unremitting, horrendous pain. I always thought that gave me a better understanding into someone else's pain. I sympathize, empathize and understand the words but do I really 'get' what someone else is feeling when they tell me about their pain?
My pain is in my eye, and was in my face. I always knew how lucky I was that it did not involve my body (that is- below my neck) so that, even though I was virtually housebound for years, because of the weather and the pain, I knew my body was able to do most of what I wanted it to do.
But recently it was not.
I developed a pain behind my knee which then spread to the whole leg. I waited about 2 months expecting it to get better. Instead it got worse. Walking was painful, the stairs to our second floor a major impediment. To get up to the bedroom I crawled up the stairs. Going back down I used my rump and scooted down, step after step.
Finally I saw a doctor. He thought it might be sciatica, something I never knew could affect the entire leg. He ordered x-rays and told me to come back in 2 weeks. The pain remained. It was a new disability. Even though I knew it was temporary (I assumed) it gave me an entirely new perspective on what it means to be disabled.
When I responded to people in my Women In Pain Awareness Group, and other support groups, I would say "I understand the pain you are going through." That was a lie. Not an intentional one but the truth was, I did not understand.
"I know how terrible it is", I wrote "to not be able to do what you want to do when you want to do it, or not be able to do it at all." I had no idea that my 'understanding' was only intellectual, not visceral.
The problem with my leg resolved with a cortisone shot. The pain and problems getting around were nothing compared to what happens when you have fibromyalgia, CRPS (complex regional pain syndrome), Lupus, or other bodywide pain disorders. It was only a short time and only my leg but I now have a better understanding of what they were talking about.
Many of us have had the experience of someone doubting our story of pain or not believing pain can really be 'that' bad.
It is hard to 'get it' when you don't walk in another person's shoes. I believed I did but until the leg somewhat incapacitated me I truly did not 'get' what it meant to have your body betray you and stop you in your tracks.
I empathized but I did not see at the deeper, comprehending level what their pain was doing to them. If I did not get it, and I know the life stealing ability of constant pain, how about others who do not know this level of pain?
I wonder if it is a concept so foreign to most people that it is more understandable when others do not understand than when they do.
My pain is in my eye, and was in my face. I always knew how lucky I was that it did not involve my body (that is- below my neck) so that, even though I was virtually housebound for years, because of the weather and the pain, I knew my body was able to do most of what I wanted it to do.
But recently it was not.
I developed a pain behind my knee which then spread to the whole leg. I waited about 2 months expecting it to get better. Instead it got worse. Walking was painful, the stairs to our second floor a major impediment. To get up to the bedroom I crawled up the stairs. Going back down I used my rump and scooted down, step after step.
Finally I saw a doctor. He thought it might be sciatica, something I never knew could affect the entire leg. He ordered x-rays and told me to come back in 2 weeks. The pain remained. It was a new disability. Even though I knew it was temporary (I assumed) it gave me an entirely new perspective on what it means to be disabled.
When I responded to people in my Women In Pain Awareness Group, and other support groups, I would say "I understand the pain you are going through." That was a lie. Not an intentional one but the truth was, I did not understand.
"I know how terrible it is", I wrote "to not be able to do what you want to do when you want to do it, or not be able to do it at all." I had no idea that my 'understanding' was only intellectual, not visceral.
The problem with my leg resolved with a cortisone shot. The pain and problems getting around were nothing compared to what happens when you have fibromyalgia, CRPS (complex regional pain syndrome), Lupus, or other bodywide pain disorders. It was only a short time and only my leg but I now have a better understanding of what they were talking about.
Many of us have had the experience of someone doubting our story of pain or not believing pain can really be 'that' bad.
It is hard to 'get it' when you don't walk in another person's shoes. I believed I did but until the leg somewhat incapacitated me I truly did not 'get' what it meant to have your body betray you and stop you in your tracks.
I empathized but I did not see at the deeper, comprehending level what their pain was doing to them. If I did not get it, and I know the life stealing ability of constant pain, how about others who do not know this level of pain?
I wonder if it is a concept so foreign to most people that it is more understandable when others do not understand than when they do.
Monday, September 5, 2011
Forgiving and Forgetting.
I often think about the 'what if's' of my life.
What if I had taken graduate work in psychology and become a psychologist? What if I stayed in the Physician Assistant program at Hahnemann and become a P.A.? What if I had never gotten to do the dinner theater which led me to the apartment in NYC? And had I not left the PA program or instead gone to graduate school would I ever have auditioned for anything? And would my life be different had I done other than what I ended up doing? What if, what if, what if?
No matter what, physically it always ends up in the same place. The trigeminal neuralgia was part of my birth defect. It was ready to be triggered no matter what I was doing. A psychologist, A P.A., a successful actress, no matter what the road it all leads to the same dead end.
But what about the people who knowingly hurt me, changed my life in ways that effect me each and everyday, from the minute I rise until I curl up under the covers at night?
My anger towards them waxes and wanes. Sometimes, when my eye is behaving itself and the pain is not too bad, or the bills have not come due they are not in the forefront of my mind.
I think some of the anger that rises unbidden at a situation having nothing to do with any of it, the old 'kick the dog syndrome', is related to it even though it may not seem that way at the moment of my anger.
I think of people I see on the news who have been put in a wheelchair by a drunken driver or left severely damaged by a shooter just driving by, or mugged and worst and left physically and emotionally scarred and damaged. I listen to them as they say "I have forgiven them."
I wonder aloud, for the umpteenth time, why can they do it but I cannot?
I think some of it is because of my aloneness. You need the support of others to help you. Not only get through it but understand it, accept and get past it - to figure out the way to go forward. If another is there to help you do whatever it is you can no longer do, to accept the unacceptable, maybe the anger at the person who caused it is not quite as necessary or consuming.
Part of the anger for me is also because they got away with what they did to me. But what about the hit and run driver or the criminal who was never found? How does their victim get past it? And yet it seems they often do.
I remember a few years back, I was telling some people about the things my siblings and parents said and did that have hurt me so deeply. "I think I forgive them but I have to make very sure I never forget."
"That's an awful thing to say. You won't forget? Then there is no forgiveness. That makes no sense you will do the one but not the other." I was told.
I think it makes a lot of sense.
The forgiving is so very important. They may never 1) know or care what they did and 2) not know or care that you forgive them but it is for your own personal well-being that you forgive. It is the only way to get past it.
Forgetting is a bad idea. Forget what someone did and you often let them do it again. You must never forget, it is to your own detriment if you do.
I find when I forget I am only too willing not only to trust them but to put my trust in others whose bahavior is very similar to the ones who have hurt me. In forgetting and giving trust where it does not belong, Bingo, here comes the same hurt. And this time my forgetting gave them the permission to do it.
When I have to go to the eye hospital, when I have to take another, or 2 or 3 pain pills, when I struggle to pay my bills, when I want to work but cannot, I think of the people that caused much of this. I do not forget them. I gave them my trust and they abused it. Do I forgive them? It is at these times that even when I thought I had I realize I have not.
Those who are injured by an intoxicated driver or evil person who commits a crime against them, maybe it is the lack of a personal relationship that allows the forgiveness. Those who hurt me lied directly to my face, knowing they were lying, knowing the devastation they were about to cause. But, as I write that last sentence, I am reminded of newsstories about someone whose life has been forever changed for the worst by a family member or friend and they have still forgiven them.
What if, what if?
Maybe my question needs to be what if I could forgive them, and better yet, how do I forgive them. And within that question is there a part of me that thinks - it is my fault, I let them get away with doing this to me.
Maybe, just maybe, a big part of the question is: how do I forgive myself?
What if I had taken graduate work in psychology and become a psychologist? What if I stayed in the Physician Assistant program at Hahnemann and become a P.A.? What if I had never gotten to do the dinner theater which led me to the apartment in NYC? And had I not left the PA program or instead gone to graduate school would I ever have auditioned for anything? And would my life be different had I done other than what I ended up doing? What if, what if, what if?
No matter what, physically it always ends up in the same place. The trigeminal neuralgia was part of my birth defect. It was ready to be triggered no matter what I was doing. A psychologist, A P.A., a successful actress, no matter what the road it all leads to the same dead end.
But what about the people who knowingly hurt me, changed my life in ways that effect me each and everyday, from the minute I rise until I curl up under the covers at night?
My anger towards them waxes and wanes. Sometimes, when my eye is behaving itself and the pain is not too bad, or the bills have not come due they are not in the forefront of my mind.
I think some of the anger that rises unbidden at a situation having nothing to do with any of it, the old 'kick the dog syndrome', is related to it even though it may not seem that way at the moment of my anger.
I think of people I see on the news who have been put in a wheelchair by a drunken driver or left severely damaged by a shooter just driving by, or mugged and worst and left physically and emotionally scarred and damaged. I listen to them as they say "I have forgiven them."
I wonder aloud, for the umpteenth time, why can they do it but I cannot?
I think some of it is because of my aloneness. You need the support of others to help you. Not only get through it but understand it, accept and get past it - to figure out the way to go forward. If another is there to help you do whatever it is you can no longer do, to accept the unacceptable, maybe the anger at the person who caused it is not quite as necessary or consuming.
Part of the anger for me is also because they got away with what they did to me. But what about the hit and run driver or the criminal who was never found? How does their victim get past it? And yet it seems they often do.
I remember a few years back, I was telling some people about the things my siblings and parents said and did that have hurt me so deeply. "I think I forgive them but I have to make very sure I never forget."
"That's an awful thing to say. You won't forget? Then there is no forgiveness. That makes no sense you will do the one but not the other." I was told.
I think it makes a lot of sense.
The forgiving is so very important. They may never 1) know or care what they did and 2) not know or care that you forgive them but it is for your own personal well-being that you forgive. It is the only way to get past it.
Forgetting is a bad idea. Forget what someone did and you often let them do it again. You must never forget, it is to your own detriment if you do.
I find when I forget I am only too willing not only to trust them but to put my trust in others whose bahavior is very similar to the ones who have hurt me. In forgetting and giving trust where it does not belong, Bingo, here comes the same hurt. And this time my forgetting gave them the permission to do it.
When I have to go to the eye hospital, when I have to take another, or 2 or 3 pain pills, when I struggle to pay my bills, when I want to work but cannot, I think of the people that caused much of this. I do not forget them. I gave them my trust and they abused it. Do I forgive them? It is at these times that even when I thought I had I realize I have not.
Those who are injured by an intoxicated driver or evil person who commits a crime against them, maybe it is the lack of a personal relationship that allows the forgiveness. Those who hurt me lied directly to my face, knowing they were lying, knowing the devastation they were about to cause. But, as I write that last sentence, I am reminded of newsstories about someone whose life has been forever changed for the worst by a family member or friend and they have still forgiven them.
What if, what if?
Maybe my question needs to be what if I could forgive them, and better yet, how do I forgive them. And within that question is there a part of me that thinks - it is my fault, I let them get away with doing this to me.
Maybe, just maybe, a big part of the question is: how do I forgive myself?
Friday, September 2, 2011
Ben's friends is no friend of mine - follow up. or How to evade responsibility.
I am so saddened that the owner of a support group behaves in a way no different than what many of us have experienced with friends, family, colleagues, etc.
I had written earlier about Ben' Friends group, living with atypical trigeminal neuralgia.
I received a note saying I had been suspended for spam they could not prove and harassment, for which they had no explanation other than to say if I replied to an email from one of the administrators it would be considered harassment.
I sent copies of the email and my replies to Ben so he would be aware of what was happening. He emailed me back asking that we speak by phone.
During the conversation I reiterated that I asked for proof of their allegations: they had none. I also told him I had owned a ning group such as his. When I suspended someone for spam I sent out a note to the group telling them someone had been removed for that reason. The same can be done if someone is removed erroneously.
Accusing someone of spamming and harassment is a major 'crime' on the internet. They needed to apologize, or correct their lie, by posting a note that they had wrongly suspended a member for those reasons. They did not even need to use my name.
This was the reply I received from Ben this morning.
It is a typical response to someone who truly does not 'get' it.
Instead of acknowledging they were wrong, instead of issuing an apology which he said they felt would be "inappropriate" with this "issue" he seemed to put the the blame for this fandango on me, writing "I know you have dealt with a lot in your life, medically," and wished me the best of luck.
My medical experiences had nothing to do with being wrongly accused.
It is sad when moderators, when shown to be wrong, when proven to put out bad information, are rewarded but the whistleblower is shown the door.
Support groups are good and necessary but no group is good, or safe, if the ones on whom members rely are so glued to their wrong positions that they refuse to acknowledge their errors.
I had written earlier about Ben' Friends group, living with atypical trigeminal neuralgia.
I received a note saying I had been suspended for spam they could not prove and harassment, for which they had no explanation other than to say if I replied to an email from one of the administrators it would be considered harassment.
I sent copies of the email and my replies to Ben so he would be aware of what was happening. He emailed me back asking that we speak by phone.
During the conversation I reiterated that I asked for proof of their allegations: they had none. I also told him I had owned a ning group such as his. When I suspended someone for spam I sent out a note to the group telling them someone had been removed for that reason. The same can be done if someone is removed erroneously.
Accusing someone of spamming and harassment is a major 'crime' on the internet. They needed to apologize, or correct their lie, by posting a note that they had wrongly suspended a member for those reasons. They did not even need to use my name.
This was the reply I received from Ben this morning.
It is a typical response to someone who truly does not 'get' it.
Instead of acknowledging they were wrong, instead of issuing an apology which he said they felt would be "inappropriate" with this "issue" he seemed to put the the blame for this fandango on me, writing "I know you have dealt with a lot in your life, medically," and wished me the best of luck.
My medical experiences had nothing to do with being wrongly accused.
It is sad when moderators, when shown to be wrong, when proven to put out bad information, are rewarded but the whistleblower is shown the door.
Support groups are good and necessary but no group is good, or safe, if the ones on whom members rely are so glued to their wrong positions that they refuse to acknowledge their errors.
Thursday, September 1, 2011
Gender bias is alive and well when it comes to women in pain.
Below is the text of the Pa. senate resolution declaring September 2011 as Women In Pain Awareess Month.
Bill Text: PA Senate Resolution 144 - 2011-2012 Regular Session
SENATE RESOLUTION
No.
144
Session of
2011
INTRODUCED BY GREENLEAF, MENSCH, STACK, KASUNIC, FERLO, KITCHEN, COSTA, FONTANA, RAFFERTY, DINNIMAN, ERICKSON, FARNESE, ORIE, PILEGGI, ALLOWAY, TARTAGLIONE, PIPPY AND HUGHES, JUNE 15, 2011
INTRODUCED AND ADOPTED, JUNE 15, 2011
A RESOLUTION
Designating the month of September 2011 as "Women in Pain
Awareness Month" in Pennsylvania to recognize the need to
raise awareness concerning gender disparity in pain
assessment and treatment.
WHEREAS, Research indicates that differences in men and women
exist in the experience of pain, with women generally
experiencing more recurrent pain, more severe pain and longer-
lasting pain than men; and
WHEREAS, Women have a higher prevalence than men of chronic
pain syndromes and diseases associated with chronic pain, such
as fibromyalgia, reflex sympathetic dystrophy and osteoarthritis
WHEREAS, Although women and men both have strong natural
pain-killing systems, these systems operate differently as the
presence of estrogen lowers an individual's threshold for pain
while testosterone elevates an individual's tolerance for pain;
and
WHEREAS, A 2001 study in the Journal of Law, Medicine, and
Ethics found that women's pain reports are taken less seriously
than those of men and that women receive less aggressive
treatment than men for their pain; and
WHEREAS, According to the National Institutes of Health, pain
is the most common reason Americans access the health care
system and more than 76.5 million Americans suffer from pain,
both chronic and acute, which increases health care costs,
estimated at $100 billion annually in health care expenses, lost
income and lost productivity; and
WHEREAS, Because women respond differently than men to many
their pain is often more all-encompassing and the level of
disability is greater; and
WHEREAS, The difference in the treatment of women in pain, as
compared to that of men, is more than a personal or gender
issue; it is a societal issue; and
WHEREAS, The Women in Pain Awareness Group was founded in
2010 to increase awareness of the gender disparity women
experience worldwide in the assessment and treatment of their
pain; and
WHEREAS, The Women in Pain Awareness Group, along with
Persons With Pain International, believes empowering women to be
better consumers for their pain management care, sensitizing
health care professionals to gender pain disparities and
enlightening public policymakers about pain as a major health
issue will improve life outcomes for all women in pain;
therefore be it
RESOLVED, That the Senate designate the month of September
2011 as "Women in Pain Awareness Month" in Pennsylvania; and be
it further
RESOLVED, That the Senate draw public attention to the
important need for women to have their pain managed effectively
and without bias through self-empowerment, public awareness,
health care professional education and legislative advocacy.
Bill Text: PA Senate Resolution 144 - 2011-2012 Regular Session
SENATE RESOLUTION
No.
144
Session of
2011
INTRODUCED BY GREENLEAF, MENSCH, STACK, KASUNIC, FERLO, KITCHEN, COSTA, FONTANA, RAFFERTY, DINNIMAN, ERICKSON, FARNESE, ORIE, PILEGGI, ALLOWAY, TARTAGLIONE, PIPPY AND HUGHES, JUNE 15, 2011
INTRODUCED AND ADOPTED, JUNE 15, 2011
A RESOLUTION
Designating the month of September 2011 as "Women in Pain
Awareness Month" in Pennsylvania to recognize the need to
raise awareness concerning gender disparity in pain
assessment and treatment.
WHEREAS, Research indicates that differences in men and women
exist in the experience of pain, with women generally
experiencing more recurrent pain, more severe pain and longer-
lasting pain than men; and
WHEREAS, Women have a higher prevalence than men of chronic
pain syndromes and diseases associated with chronic pain, such
as fibromyalgia, reflex sympathetic dystrophy and osteoarthritis
WHEREAS, Although women and men both have strong natural
pain-killing systems, these systems operate differently as the
presence of estrogen lowers an individual's threshold for pain
while testosterone elevates an individual's tolerance for pain;
and
WHEREAS, A 2001 study in the Journal of Law, Medicine, and
Ethics found that women's pain reports are taken less seriously
than those of men and that women receive less aggressive
treatment than men for their pain; and
WHEREAS, According to the National Institutes of Health, pain
is the most common reason Americans access the health care
system and more than 76.5 million Americans suffer from pain,
both chronic and acute, which increases health care costs,
estimated at $100 billion annually in health care expenses, lost
income and lost productivity; and
WHEREAS, Because women respond differently than men to many
their pain is often more all-encompassing and the level of
disability is greater; and
WHEREAS, The difference in the treatment of women in pain, as
compared to that of men, is more than a personal or gender
issue; it is a societal issue; and
WHEREAS, The Women in Pain Awareness Group was founded in
2010 to increase awareness of the gender disparity women
experience worldwide in the assessment and treatment of their
pain; and
WHEREAS, The Women in Pain Awareness Group, along with
Persons With Pain International, believes empowering women to be
better consumers for their pain management care, sensitizing
health care professionals to gender pain disparities and
enlightening public policymakers about pain as a major health
issue will improve life outcomes for all women in pain;
therefore be it
RESOLVED, That the Senate designate the month of September
2011 as "Women in Pain Awareness Month" in Pennsylvania; and be
it further
RESOLVED, That the Senate draw public attention to the
important need for women to have their pain managed effectively
and without bias through self-empowerment, public awareness,
health care professional education and legislative advocacy.
Tuesday, August 30, 2011
Abnormality is our normal, or Psychiatry tunes out our reality.
Before the mini-lobotomy that Dr. William Sweet tried to talk me into, "You will still have the pain, you just won't care that you do." he had me evaluated mentally and intellectually.
One of the tests used was the MMPI or Minnesota Multiphasic Personality Inventory*.
A number of these questions cannot be answered the same way by those without pain vs those with chronic intractable pain.
Many docs, psychologists, rehabilitationists and counselors use this test. See how you feel about it. For readers without pain I put the reasonings below the statements for which you had to choose True or False.
"I wake up fresh and rested most mornings.
My daily life is full of things that keep me interested.
I am about as able to work as I ever was.
I work under a great deal of tension.
(Trying to get the work done before the pain becomes too great to continue on.)
I am sure I get a raw deal from life.
(I am in constant chronic intractable pain. What else is it if not a 'raw deal'?)
I am very seldom bothered by constipation.
(If you are takiing narcotics (and some other meds) this is a known side effect.)
I find it hard to keep my mind on a task or job.
(Pain. Meds.)
I am a very sociable person.
(see above.)
Parts of my body often have feelings like burning, tingling, crawling, or like "going to sleep".
(This defines some of the sensations of tn as well as some other pain disorders.)
At times I have very much wanted to leave home.
(Trigeminal neuralgia forces you to stay in much of the time as does many of the pain syndromes. I was virtually housebound for over 10 years, going out only to the bank, grocery, and doctor appointments.)
Much of the time, my head seems to hurt all over.
I am in just as good physical health as most of my friends.
I prefer to pass by school friends, or people I know but have not seen for a long time, unless they speak to me first.
(Many of us do not want to have to deal with the questions of 'what have you been doing.' For me, I did not want to have to answer the additional questions, or deal with the pitying looks, about the facial paralysis.)
I wish I could be as happy as others seem to be.
(We are in pain. Most of us are unhappy about that, and what it has done to our lives.)
Most of the time I feel blue.
(We are in pain. see above.)
I usually feel that life is worthwhile.
(Some of us do not. I was advised at one point, by doctors, including a psychiatrist, that 'rational suicide was acceptable in my case.)
Often I feel as if there is a tight band around my head.
(For trigeminal neuralgia, at least half our heads, unless you have bilateral.)
My speech is the same as always (not faster or slower, no slurring or hoarseness).
(Not once we start on the anticonvulsants, opiates, and other medications prescribed for constant chronic pain.)
My table manners are not quite as good at home as when I am out in company.
(For me, it is hard to eat because of the paralysis and loss of sensation in my mouth. For others, opening their mouths is painful so eating is difficult. At home I can enjoy my food more and worry later about what has fallen out of my mouth. I sure cannot do that when eating out.)
I know who is responsible for most of my troubles.
(Dr. Martinez caused the numbness where there had previously been none.
Dr. Jannetta paralyzed my face. Dr. Wiulson said there was too much scar tissue from Dr. Jannetta's surgery to do what he wanted. My 2 lawyers left me high and dry.).
I believe that my home life is as pleasant as that of most people I know.
I certainly feel useless at times.
The top of my head sometimes feels tender.
(Hello. Did someone say trigeminal neuralgia?)
I do not tire quickly.
My memory seems to be all right.
(Pain and pain medications change this for many of us; from peppy or energetic to zonked and and good memory to fuzzy, cloudy, zonked.)
I can read a long without tiring my eyes.
(This is more specific for those like me whose trigeminal neuralgia effected their eye usage.)
My hands have not become clumsy or awkward.
(This is an issue for many with pain, such as arthritis, etc. The medications can also cause this.)
I have had no difficulty in keeping my balance while walking.
(Again the meds.)
I enjoy many different kinds of play and recreation.
(The pain stops that.)
I frequently find myself worrying about something.
(The next surgery, or that there is no more surgery. The next drug or there is no drug. The next time the pain attacks.)
I have few or no pains. (Obvious)
I have difficulty in starting to do things.
(Meds and pain.)
It does not bother me that I am not better looking.
(This is more specifgic for me and others whose pain/treatments for the pain caused changes to their looks.)
I have numbness in one or more places on my skin.
I have often felt that strangers were looking at me critically.
(Again the paralysis. Others with pain often tell stories of using the handicapped spots (with the appropriate plate or placard)and people yelling at them that they were not disabled and "How dare you park there? -this also happened to me. Because pain is invisible we also get looked at critically by those who refuse to believe that we have pain or cannot do something that we say we cannot do because of the pain.)
Life is a strain for me much of the time.
My parents and family find more fault with me than they should.
(I have heard way too many stories similar to mine where nasty things are said because family refuses to accept the pain/disability.)
I have never been paralyzed or had any unusual weakness of any of my muscles.
Most of the time I wish I were dead.
(Too many of us have expressed this wish, whether an active wish or inactive. Only those who live with constant chronic pain can really understand (and those who have devoted and accepting family) why death is not is not the worst thing that can happen.)
I forget right away what people say to me.
(Again meds but also sometimes the pain is so loud nothing else can get through.)
I usually have to stop and think before I act, even in small matters.
(Meds, Pain.)
Often I cross the street in order not to meet someone I see.
(When the pain is bad it is hard to be a "hail fellow well met.")
I often feel as if things are not real.
(Narcotics will do that to you.)
I get anxious and upset when I have to make a short trip away from home.
(What if the pain gets too bad? What if I forgot/don't have enough medication with me? What if, for those with trigeminal neuralgia - this is definitely how it was with me, someone moves their arm, or takes off a coat, or it gets breezy triggering the pain more? Too many what if's.)
I have more trouble concentrating than others seem to have.
Almost every day something happens to frighten me.
(For me when the t.n. was very bad, anytime a breeze came up, a strand of hair started to fall on my face, someone walked by too closely, the chance something would trigger the pain, was terrifying.)
At parties I am more likely to sit by myself or with just one other person than to join in with the crowd.
(Too many opportunities to increase the pain.)
I have sometimes felt that difficulties were piling up so high that I could not overcome them.
(The pain, the medications, the inability to work causing financial troubles, the loss of friends as they disappearred the more times you say "I'm sorry, I can't.")
I have often met people who were supposed to be experts who were no better than I.
(See Dr. Martinez, Dr. Jannetta, my lawyers.)
Whenever possible I avoid being in a crowd.
(Again, triggers for the pain.)
It makes me nervous when people ask me personal questions.
(It is tiring, hurtful, frustrating to say "pain, pain, pain.")
I do not feel I can plan my own future.
(It si up to the docs, the treatments, the surgeries, the medications.)
I am not happy with myself the way I am.
(Uh. duh.)
I very seldom have spells of the blues.
(see above.)
A windstorm frightens me.
(This is a killer for trigwminal neuralgia, and some other disorders such as some people who have CRSP, complex regional pain syndrome.)
The future is too uncertain for a person to make serious plans.
I have no fear of water.
(That is a killer for those with touch triggers.)
The future seems hopeless to me.
(Until the right doc and the right med/treatment/surgery comes along.)
I can stand as much pain as others can +
(No, I can stand more.)
I spend most of my spare time by myself.
My main goals in life are within my reach.
I am not feeling much pressure or stress these days.
I hate going to doctors, even when I'm sick.
Although I am not happy with my life, there is nothing I can do about it.
(Not depression,true for many of us.)
I am so sick of what I have to do every day that I just want to get out of it all.
(see above.)
I have recently considered killing myself.
(Same as the other questions about suicidal thoughts.)
My life is empty and meaningless.
(see above.)
I find it difficult to hold down a job.
Lately I have thought a lot about killing myself."
It turned out to be a longer list than I expected so I apologize for typos; because "I can read a long without tiring my eyes." - not. Or ending up in severe pain.
The reason I write about this, and will write more on it, is because of the way too many times many pain patients have been told "it is all in your head." or that their pain is psychiatric and not physical, regardless of the physical findings.
--------------------------------------------------------------------------
Copied and pasted from http://www.mindfithypnosis.com/articles/mmpr2-online-test.shtml
One of the tests used was the MMPI or Minnesota Multiphasic Personality Inventory*.
A number of these questions cannot be answered the same way by those without pain vs those with chronic intractable pain.
Many docs, psychologists, rehabilitationists and counselors use this test. See how you feel about it. For readers without pain I put the reasonings below the statements for which you had to choose True or False.
"I wake up fresh and rested most mornings.
My daily life is full of things that keep me interested.
I am about as able to work as I ever was.
I work under a great deal of tension.
(Trying to get the work done before the pain becomes too great to continue on.)
I am sure I get a raw deal from life.
(I am in constant chronic intractable pain. What else is it if not a 'raw deal'?)
I am very seldom bothered by constipation.
(If you are takiing narcotics (and some other meds) this is a known side effect.)
I find it hard to keep my mind on a task or job.
(Pain. Meds.)
I am a very sociable person.
(see above.)
Parts of my body often have feelings like burning, tingling, crawling, or like "going to sleep".
(This defines some of the sensations of tn as well as some other pain disorders.)
At times I have very much wanted to leave home.
(Trigeminal neuralgia forces you to stay in much of the time as does many of the pain syndromes. I was virtually housebound for over 10 years, going out only to the bank, grocery, and doctor appointments.)
Much of the time, my head seems to hurt all over.
I am in just as good physical health as most of my friends.
I prefer to pass by school friends, or people I know but have not seen for a long time, unless they speak to me first.
(Many of us do not want to have to deal with the questions of 'what have you been doing.' For me, I did not want to have to answer the additional questions, or deal with the pitying looks, about the facial paralysis.)
I wish I could be as happy as others seem to be.
(We are in pain. Most of us are unhappy about that, and what it has done to our lives.)
Most of the time I feel blue.
(We are in pain. see above.)
I usually feel that life is worthwhile.
(Some of us do not. I was advised at one point, by doctors, including a psychiatrist, that 'rational suicide was acceptable in my case.)
Often I feel as if there is a tight band around my head.
(For trigeminal neuralgia, at least half our heads, unless you have bilateral.)
My speech is the same as always (not faster or slower, no slurring or hoarseness).
(Not once we start on the anticonvulsants, opiates, and other medications prescribed for constant chronic pain.)
My table manners are not quite as good at home as when I am out in company.
(For me, it is hard to eat because of the paralysis and loss of sensation in my mouth. For others, opening their mouths is painful so eating is difficult. At home I can enjoy my food more and worry later about what has fallen out of my mouth. I sure cannot do that when eating out.)
I know who is responsible for most of my troubles.
(Dr. Martinez caused the numbness where there had previously been none.
Dr. Jannetta paralyzed my face. Dr. Wiulson said there was too much scar tissue from Dr. Jannetta's surgery to do what he wanted. My 2 lawyers left me high and dry.).
I believe that my home life is as pleasant as that of most people I know.
I certainly feel useless at times.
The top of my head sometimes feels tender.
(Hello. Did someone say trigeminal neuralgia?)
I do not tire quickly.
My memory seems to be all right.
(Pain and pain medications change this for many of us; from peppy or energetic to zonked and and good memory to fuzzy, cloudy, zonked.)
I can read a long without tiring my eyes.
(This is more specific for those like me whose trigeminal neuralgia effected their eye usage.)
My hands have not become clumsy or awkward.
(This is an issue for many with pain, such as arthritis, etc. The medications can also cause this.)
I have had no difficulty in keeping my balance while walking.
(Again the meds.)
I enjoy many different kinds of play and recreation.
(The pain stops that.)
I frequently find myself worrying about something.
(The next surgery, or that there is no more surgery. The next drug or there is no drug. The next time the pain attacks.)
I have few or no pains. (Obvious)
I have difficulty in starting to do things.
(Meds and pain.)
It does not bother me that I am not better looking.
(This is more specifgic for me and others whose pain/treatments for the pain caused changes to their looks.)
I have numbness in one or more places on my skin.
I have often felt that strangers were looking at me critically.
(Again the paralysis. Others with pain often tell stories of using the handicapped spots (with the appropriate plate or placard)and people yelling at them that they were not disabled and "How dare you park there? -this also happened to me. Because pain is invisible we also get looked at critically by those who refuse to believe that we have pain or cannot do something that we say we cannot do because of the pain.)
Life is a strain for me much of the time.
My parents and family find more fault with me than they should.
(I have heard way too many stories similar to mine where nasty things are said because family refuses to accept the pain/disability.)
I have never been paralyzed or had any unusual weakness of any of my muscles.
Most of the time I wish I were dead.
(Too many of us have expressed this wish, whether an active wish or inactive. Only those who live with constant chronic pain can really understand (and those who have devoted and accepting family) why death is not is not the worst thing that can happen.)
I forget right away what people say to me.
(Again meds but also sometimes the pain is so loud nothing else can get through.)
I usually have to stop and think before I act, even in small matters.
(Meds, Pain.)
Often I cross the street in order not to meet someone I see.
(When the pain is bad it is hard to be a "hail fellow well met.")
I often feel as if things are not real.
(Narcotics will do that to you.)
I get anxious and upset when I have to make a short trip away from home.
(What if the pain gets too bad? What if I forgot/don't have enough medication with me? What if, for those with trigeminal neuralgia - this is definitely how it was with me, someone moves their arm, or takes off a coat, or it gets breezy triggering the pain more? Too many what if's.)
I have more trouble concentrating than others seem to have.
Almost every day something happens to frighten me.
(For me when the t.n. was very bad, anytime a breeze came up, a strand of hair started to fall on my face, someone walked by too closely, the chance something would trigger the pain, was terrifying.)
At parties I am more likely to sit by myself or with just one other person than to join in with the crowd.
(Too many opportunities to increase the pain.)
I have sometimes felt that difficulties were piling up so high that I could not overcome them.
(The pain, the medications, the inability to work causing financial troubles, the loss of friends as they disappearred the more times you say "I'm sorry, I can't.")
I have often met people who were supposed to be experts who were no better than I.
(See Dr. Martinez, Dr. Jannetta, my lawyers.)
Whenever possible I avoid being in a crowd.
(Again, triggers for the pain.)
It makes me nervous when people ask me personal questions.
(It is tiring, hurtful, frustrating to say "pain, pain, pain.")
I do not feel I can plan my own future.
(It si up to the docs, the treatments, the surgeries, the medications.)
I am not happy with myself the way I am.
(Uh. duh.)
I very seldom have spells of the blues.
(see above.)
A windstorm frightens me.
(This is a killer for trigwminal neuralgia, and some other disorders such as some people who have CRSP, complex regional pain syndrome.)
The future is too uncertain for a person to make serious plans.
I have no fear of water.
(That is a killer for those with touch triggers.)
The future seems hopeless to me.
(Until the right doc and the right med/treatment/surgery comes along.)
I can stand as much pain as others can +
(No, I can stand more.)
I spend most of my spare time by myself.
My main goals in life are within my reach.
I am not feeling much pressure or stress these days.
I hate going to doctors, even when I'm sick.
Although I am not happy with my life, there is nothing I can do about it.
(Not depression,true for many of us.)
I am so sick of what I have to do every day that I just want to get out of it all.
(see above.)
I have recently considered killing myself.
(Same as the other questions about suicidal thoughts.)
My life is empty and meaningless.
(see above.)
I find it difficult to hold down a job.
Lately I have thought a lot about killing myself."
It turned out to be a longer list than I expected so I apologize for typos; because "I can read a long without tiring my eyes." - not. Or ending up in severe pain.
The reason I write about this, and will write more on it, is because of the way too many times many pain patients have been told "it is all in your head." or that their pain is psychiatric and not physical, regardless of the physical findings.
--------------------------------------------------------------------------
Copied and pasted from http://www.mindfithypnosis.com/articles/mmpr2-online-test.shtml
Saturday, August 27, 2011
Alone in the storm or Oh brother where art thou?
The wind is getting a little stronger. I keep hearing the TV meteorologists, the governors and mayors, trying to scare me, maybe telling the truth, but it is easier to work at thinking it will be nothing like they are saying. The hurricane and tropical storm, winds and rains they are predicting for my area, will be nothing like their screeches - get inside, tape your windows, find a safe place - but instead just a whisper.
I went through almost all my surgeries alone, being taken down to the OR by orderlies, no one there to take my hand or touch my shoulder and say "It will be allright. I'm here for you now. I will be here when you wake up."
I am feeling the same bereftness now.
The people who are supposed to be my family, the sister and brother with whom I was raised, live 20 and 35 minutes away, respectively. Except for my brother sending me a manila envelope filled with pictures of me as a child, some of my report cards and some other things (I have no idea where they came from or why he had them), no note, just essentially an F--- you, you are not my sister" I have heard nothing from him, or my sister.
I have written before about some of the things they have done to me, yet have made me the bad guy, their children believing them. Except for one brave soul there is no family for me, and he lives a number of states away.
I was reading a novel and came to these lines: "You don't need to protect me anymore Neil." "Yes I do. I'm always your older brother. I want to be there for you." Everytime I read lines like these, 'I am your sister, I am your brother' it is a knife to the heart.
It is times like tonight, especially, when they keep talking about having a safe place to go, let your family know where you are, let them know you are safe, if you have no one go to a shelter, that the sharpness of the betrayal of family, that the turning away, for no reason, of the people that the world tells you to go to when there is trouble (and I know way too many people are in my boat, the 'family' nowhere near what the storybooks say) when it is the most acute.
For much of my days they are not there in my thoughts, they have disappeared, as they have in real life. It would be nice, I sometimes think, if I could call the sister, who once told me, "when I am just with you alone it is enjoyable" but somehow others (one sister) seemed to have made sure she turned away.
The brother and I have much in common. He is creative, an artist (or was at least). His hurting of me has been the worst because he has done it to me publicly.
He invited me, I do not know why, to his son's bar mitzvah. He called me while I was in the hospital. The date would be only a few days after I had major surgery. I told him that I was not sure I could come because of that. I was told that if I did not come it just showed what kind of person I was because he was extending himself to me and I was refusing. What could I do?
I took a train from Pennsylvania to Florida where they were living. He and his wife picked me up from the train station and took me to their home where my other 2 sisters were, having also come down (from Pennsylvania) for the celebration.
Not one person asked "Are you okay?" How are you feeling?" or even "How did the operation go?" I spent the visit pretending I felt well.
The surgery was not at the base of my pain though. It was when I was at the synagogue and the little pamphlets were being given out that told about the Bar Mitzvah boy and the service.
On the front was a thank you "to all our family" on my brother's side. Everyone's name was there. But mine. The hurt was physical. My nephew did call me up, with the rest of the family, to help cut the cake. That helped salve it some. I was not completely publicly cut out.
When my father was dying he hired people that were nurse's aides and not well trained. I saw some of them, one in particular, treat him cruelly. My 2 sisters who were often at the house protected them when I pointed out something horribly mean - like the time one aide sat there as my father, who had ALS and could move only one finger, kept asking for mushroom soup. He asked, then fell asleep for 2 or 3 minutes. Then he would wake "I want some mushroom soup" and fall asleep. The aide just sat there. My father kept repeating this request, maybe 5 times. I realized she was not going to bother so I said I would get it.
I walked into the kitchen. To my surprise there was mushroom soup sitting in a pot on the stove. It made no sense that she would not have said, "It's heating up, I'll go get it for you." The man wanted his soup. She had made it. What kind of game was she playing?
I brought the bowl into the room. "Give that to me, I will feed it to him." she demanded. Then she sat the bowl down on her lap, not feeding him.
Finally she said, "I need (something, I no longer recall what) from the other room. Go get it for me?" she said to me. As soon as I left the room I glanced back towards where he was sitting. Now that I was gone she was feeding him the soup. She would not do it while I was in the room. I had no idea why.
I told my sisters. "Then do not stay in the room." they replied. They did not care that she was doing something hurtful to him. More important that I be hurt and left out.
My brother came up from Florida for a visit. We were standing in my mother's room. I told him what had happened; that the aides were being downright awful to him and that I was also being treated horribly by my sisters. I started crying. I reached out to him. He let me 'hug' him for maybe 2 seconds then pushed me away. "Let them do what they want and you stay away."
His disdain(?) dislike(?) hatred(?) for me trumped his concern for our father and his getting the care he needed.
The third time was the strangest still (at least until the envelope with the pictures).
He had invited me to his daughter's wedding. She barely knew me, he had not talked to me in ages.
Nevertheless I knew I had to go if only so people could not say "See, I told you. What a bitch, she did not even come to her own neice's wedding."
He told me I could only come alone, there was no room at the reception for me to bring someone else. It would cost too much for more another table place for my friend who was driving me, even if she paid for her own meal.
The wedding was over and we were in the reception hall. He came over to me. "There is someone you have to meet." he said, almost pulling me along with him.
He called over to a woman I had never seen before. She walked over, smiling at David, and looking at me.
"Do you know who this is?" he asked me, his face and voice announcing his enjoyment.
"I am sorry but I don't."
The woman looked at him curiously. She shook her head. She did not know who I was. I was embarrassed. I assumed it was someone I should know.
He continued to look at me, almost gleefully. "Are you sure you don't know who this is?"
I was completely stumped.
"I'm sorry. I don't know you, I'm afraid."
"This is my half sister ( )." I was dumbfounded. None of the 3 of my siblings (half siblings) had ever had a relationship with their father or his family. What was she doing here?
It turned out she was the sister they found to take my place. Don't like your sister, for unknown reasons, (or at least ones you never told her) just go out and find another.
He had no room at the table for me to bring someone - I was totally alone - but there was ( ) the half sister, her husband, and her mother, seated at the same table where I had been told to sit and where there was no room. Surprisingly there was plenty of room for them.
Do you ever get over the pain? Do you ever get over the aloneness of having no one?
Is there ever shelter from the storm?
I went through almost all my surgeries alone, being taken down to the OR by orderlies, no one there to take my hand or touch my shoulder and say "It will be allright. I'm here for you now. I will be here when you wake up."
I am feeling the same bereftness now.
The people who are supposed to be my family, the sister and brother with whom I was raised, live 20 and 35 minutes away, respectively. Except for my brother sending me a manila envelope filled with pictures of me as a child, some of my report cards and some other things (I have no idea where they came from or why he had them), no note, just essentially an F--- you, you are not my sister" I have heard nothing from him, or my sister.
I have written before about some of the things they have done to me, yet have made me the bad guy, their children believing them. Except for one brave soul there is no family for me, and he lives a number of states away.
I was reading a novel and came to these lines: "You don't need to protect me anymore Neil." "Yes I do. I'm always your older brother. I want to be there for you." Everytime I read lines like these, 'I am your sister, I am your brother' it is a knife to the heart.
It is times like tonight, especially, when they keep talking about having a safe place to go, let your family know where you are, let them know you are safe, if you have no one go to a shelter, that the sharpness of the betrayal of family, that the turning away, for no reason, of the people that the world tells you to go to when there is trouble (and I know way too many people are in my boat, the 'family' nowhere near what the storybooks say) when it is the most acute.
For much of my days they are not there in my thoughts, they have disappeared, as they have in real life. It would be nice, I sometimes think, if I could call the sister, who once told me, "when I am just with you alone it is enjoyable" but somehow others (one sister) seemed to have made sure she turned away.
The brother and I have much in common. He is creative, an artist (or was at least). His hurting of me has been the worst because he has done it to me publicly.
He invited me, I do not know why, to his son's bar mitzvah. He called me while I was in the hospital. The date would be only a few days after I had major surgery. I told him that I was not sure I could come because of that. I was told that if I did not come it just showed what kind of person I was because he was extending himself to me and I was refusing. What could I do?
I took a train from Pennsylvania to Florida where they were living. He and his wife picked me up from the train station and took me to their home where my other 2 sisters were, having also come down (from Pennsylvania) for the celebration.
Not one person asked "Are you okay?" How are you feeling?" or even "How did the operation go?" I spent the visit pretending I felt well.
The surgery was not at the base of my pain though. It was when I was at the synagogue and the little pamphlets were being given out that told about the Bar Mitzvah boy and the service.
On the front was a thank you "to all our family" on my brother's side. Everyone's name was there. But mine. The hurt was physical. My nephew did call me up, with the rest of the family, to help cut the cake. That helped salve it some. I was not completely publicly cut out.
When my father was dying he hired people that were nurse's aides and not well trained. I saw some of them, one in particular, treat him cruelly. My 2 sisters who were often at the house protected them when I pointed out something horribly mean - like the time one aide sat there as my father, who had ALS and could move only one finger, kept asking for mushroom soup. He asked, then fell asleep for 2 or 3 minutes. Then he would wake "I want some mushroom soup" and fall asleep. The aide just sat there. My father kept repeating this request, maybe 5 times. I realized she was not going to bother so I said I would get it.
I walked into the kitchen. To my surprise there was mushroom soup sitting in a pot on the stove. It made no sense that she would not have said, "It's heating up, I'll go get it for you." The man wanted his soup. She had made it. What kind of game was she playing?
I brought the bowl into the room. "Give that to me, I will feed it to him." she demanded. Then she sat the bowl down on her lap, not feeding him.
Finally she said, "I need (something, I no longer recall what) from the other room. Go get it for me?" she said to me. As soon as I left the room I glanced back towards where he was sitting. Now that I was gone she was feeding him the soup. She would not do it while I was in the room. I had no idea why.
I told my sisters. "Then do not stay in the room." they replied. They did not care that she was doing something hurtful to him. More important that I be hurt and left out.
My brother came up from Florida for a visit. We were standing in my mother's room. I told him what had happened; that the aides were being downright awful to him and that I was also being treated horribly by my sisters. I started crying. I reached out to him. He let me 'hug' him for maybe 2 seconds then pushed me away. "Let them do what they want and you stay away."
His disdain(?) dislike(?) hatred(?) for me trumped his concern for our father and his getting the care he needed.
The third time was the strangest still (at least until the envelope with the pictures).
He had invited me to his daughter's wedding. She barely knew me, he had not talked to me in ages.
Nevertheless I knew I had to go if only so people could not say "See, I told you. What a bitch, she did not even come to her own neice's wedding."
He told me I could only come alone, there was no room at the reception for me to bring someone else. It would cost too much for more another table place for my friend who was driving me, even if she paid for her own meal.
The wedding was over and we were in the reception hall. He came over to me. "There is someone you have to meet." he said, almost pulling me along with him.
He called over to a woman I had never seen before. She walked over, smiling at David, and looking at me.
"Do you know who this is?" he asked me, his face and voice announcing his enjoyment.
"I am sorry but I don't."
The woman looked at him curiously. She shook her head. She did not know who I was. I was embarrassed. I assumed it was someone I should know.
He continued to look at me, almost gleefully. "Are you sure you don't know who this is?"
I was completely stumped.
"I'm sorry. I don't know you, I'm afraid."
"This is my half sister ( )." I was dumbfounded. None of the 3 of my siblings (half siblings) had ever had a relationship with their father or his family. What was she doing here?
It turned out she was the sister they found to take my place. Don't like your sister, for unknown reasons, (or at least ones you never told her) just go out and find another.
He had no room at the table for me to bring someone - I was totally alone - but there was ( ) the half sister, her husband, and her mother, seated at the same table where I had been told to sit and where there was no room. Surprisingly there was plenty of room for them.
Do you ever get over the pain? Do you ever get over the aloneness of having no one?
Is there ever shelter from the storm?
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