THE CONUNDRUM OF PAIN.

September is National Pain Awareness Month. In Pennsylvania it is also Women In Chronic Pain Month.

The latter is an easier concept. Bringing attention to the disparity and gender bias in treating chronic pain in women vs. men.

To my mind, the former is much more complicated.

First if all, I wish they had included the word “chronic” in the resolution and not merely the word “pain”. Everyone is in pain at some time or another. The issue is much greater than that. It goes directly to the kind and amount of research and research funding, as well as the treatment of those living with chronic pain.

There are many disorders and diseases with pain as the main or sole complaint. These are some of them: cranial nerve neuropathies (such as trigeminal or glossopharyngeal neuralgia), peripheral neuropathies, including phantom pain, CRPS (chronic regional pain syndrome), many of the auto immune disorders such as rheumatoid arthritis, and Lupus, and the list goes on and on.

Many of them have treatments, medications, and possibly surgeries, that are specific to the diagnosis. The one common denominator, absent the pain, is the use of prescribed opiates. Codeine, Vicodin, and others are prescribed mainly as an analgesic, since all they can hopefully do is anaesthetize the pain.

Many of us who live with daily and often constant pain tend to look at it as one main category: chronic pain. But putting it all in one basket or one name makes it harder to accept the difficulty in finding an appropriate treatment. There is not and probably cannot be just one answer, because there are too many disorders as the primary cause.

I have to admit I get frustrated when I see attention and publicity paid to a specific disease such as fibromyalgia or CRPS. I immediately think but that is only one illness, what about the rest of us?

My trigeminal neuralgia pain is not the same as the pain of someone who has CRPS or fibromyalgia. Of course it is different. Yet there is a debate ongoing as to whether chronic pain is a disease in and of itself.

How can it be a singular disorder? Pain, after all, is a symptom, a sign. It is not an entire entity.

But boy, I sure wish it was. Research and funds could be coordinated with one single goal; relieving the chronic pain of an estimated 100 million Americans.

It would be so easy, so wonderful to have the one- size- fits- all answer. It allows for hope. If all the money, all the studies and research were directed towards the one endpoint — the chances of a cure would be greater. Instead it is scattershot towards the individual illnesses.

It is National Pain Awareness Month. We need to bring attention to the month, to the numbers of people living with pain, to its disability and horrors. It is a time to announce the ills that cause the pain. It is also a time to remind ourselves that the answer may be a longer time in coming then we wish. The upside is that the research is ongoing for the singular illnesses.

And in that, there is hope.
________________________________________________
Reposted from my column: http://americannewsreport.com/nationalpainreport/pained-life-conundrum-pain-8821580.html

TO BANQUET OR NOT TO BANQUET.

The choir banquet is coming up.  I have gone to the last 3.  They are nice.  The restaurant is nice, the food okay, the company good.

But.  The lights are bright.  No matter where I sit I have to look to the left and to the right to talk to people.  It is a codeine laden night.

Since my implant has died the pain from eye usage and movement has gotten worse, and worse.  I find myself doing less and less because of the increase of pain and the decrease of eye usage time.

Choir rehearsal, and the church service is very hard for me.  Rehearsal requires a lot of singing and a lot of looking at the sheet music.  In addition, the room is very bright.  Since it has gotten hotter there is also the movement of the fan.  The eye responds in pain not only to my moving it but when something moves in front of it so the fan is an additional problem.  The service is hard even though we only sing one song and 2 hymns (and an introit).

I do better after church when we go downstairs to 'fellowship'.  The light is bright but I am not as close to them as I am in choir where the ceiling seems to be lower, in addition to sitting on a higher level so we are closer to the lights.  There is no choir director to have to try and watch for movements to indicate when and how to sing.  Nevertheless, if I talk to too many people I can be in trouble with the eye.  The benefit is I can leave whenever I want.

The banquet requires too much of me.  I am not sure why but I have never felt I am a fully accepted member of the choir.  I try to talk to people or be involved in conversations but often am ignored.  I am not sure if that is me or them.  (Another topic for another post, do I give off the scent, "don't ask".)  Going is an inclusion.  The pain is an exclusion.  In addition I cannot drive at night so I have to stay no matter how much trouble I am in with the pain.

This year I have made the decision.  I am not going.  I am giving in to the pain and the fear of the pain.

It is a decision I hate to make, it is a capitulation I abhor.  And sometimes it is the hateful that is the right thing to do.

NOT ALL CLICHES ARE OLDIES BUT GOODIES.

 

 

 

 

 

When someone hears my story about the medical malpractice that paralyzed my face, invariably they say, “What goes around comes around” or “He’ll get his.”  Some talk about “payback” or say “Karma will get him in the end.”  I get it. It’s a way to make me feel better. But it doesn’t.

It doesn’t because if he’ll “pay someday” or if life “takes care of it” then I have to ask the other side of the equation:  Is my pain the result of my bad Karma?  Is the malpractice, and the stopping of my life and dreams, my payback?  After all, if he’s getting his, am I getting mine?

I think about the clichés people use when confronted with a situation they do not understand or know how to deal with.

“God never gives you more than you can handle.”

He doesn’t? Then why is my pain overwhelming? Why am I struggling so hard to live with it? Am I a failure because I can’t handle it?

“It could be worse.”
Worse then what? Cancer? Losing a loved one? Of course not. But you know what? Pain consumes our lives and it consumes my life. When it doesn’t, it stops me from being involved with life. It keeps me isolated and drugged.

No. I am sorry. I already know I have it better than many people.

I think of my eye, my face, as separate from my body. Many of my doctors also see it that way, saying “I can’t help you because your pain is above the neck.”

My body works. I can get out of bed in the morning, dress myself, walk, bend, do everything a body needs to do. That puts me ahead of many, including many who live with chronic pain.

I have a roof over my head and enough money to get by, at least in the short run. That puts me in a better position than many others who are not as fortunate. I try to remember that, but when you say to me “It could be worse,” I feel worse. I feel chastised.

I have had 12 brain surgeries to try and help the pain. My head is a mass of indentations, soft spots, scars, and additional problems because of the operations.  A few years ago a friend told me, “You’re brain damaged.”

I was glad we were on the phone. I did not want her to see my reaction. I was appalled. And angry. How dare she say that! That expression is fraught with meaning, not a lot of it good.  But wait. She was right. I am brain damaged.

I hate writing the sentence, much less acknowledging its truth.

“You need that like you need a hole in the head.”  Oh please. Don’t say that.

As a result of a problem with another surgery, my neck “fell down.’ I now have 2 clamps and 12 screws holding my neck up and in place.  “You have a screw loose.”

Even though it’s a joke, I flinch when someone who knows about my neck says it.

“You have it so much worse than I, so I can’t complain.”  Sure you can. Your misery, while you have it, even if it is just a bad cold, is as awful for you as my pain is for me. I know a cold vs. chronic pain is a mismatch, heavyweight vs. lightweight, but my pain does not negate yours.

“Life isn’t fair.”  “Whatever doesn’t kill you makes you stronger.”  The first is definitely true, but the second? Maybe.

When life, your friends, even strangers, hand you a cliché, when lemons seem the order of the day, sometimes you just need to ignore it and do something nice for yourself.

Me? I think I’ll go make some lemonade

____________________________________________________________________
Reprinted from my column on National Pain Report.
( http://americannewsreport.com/nationalpainreport/a-pained-life-how-words-can-hurt-8819942.html )

SPRING CLEANING.

 Ah spring!  The time to go through the closets, throw out clothes we don’t want or need anymore (or fit in), put away winter things and bring out the spring outfits.

I go into my pantry and am surprised, as I am every year, to see how many cans and jars have passed their expiration dates and need to be thrown out.

It is a good time too to look at the people in our lives and see if any of them may have also passed their expiration dates, not just friends, maybe some family and medical people as well.

I used to live in New York City, but Dr. Michaels*, my neuro-ophthalmologist, was in Philadelphia.

He suggested I find someone closer to home. He recommended Dr. Smith* and I made an appointment to see him.

I was uncomfortable from the moment I walked into Dr. Smith’s consulting room.  It was a hot summer day. The air conditioning unit was on. Any air blowing on my face was a major trigger for my neuralgia pain.

“Could you turn that down, Dr. Smith?  It is really setting off the pain,” I asked.
“If it really hurt, you would just turn it down yourself,” he replied.

No caring, no comprehending.  I stayed with him anyway.  I felt I had nowhere else to go, no other doctor I could see.  The pain speaks to me: “You have to have someone and Dr. Michaels has no other recommendations.”

I did not end our relationship until the day I read his chart note: “There are days like today I believe in her pain.”

Keeping him for my doctor as long as I did was a bad decision.  I knew he was wrong for me and yet I stayed.

Which reminds me of a friendship I had.

When I moved to a condo in my new town I quickly became friends with a neighbor. The friendship was based solely on neediness, on both sides.  For me the need was being alone in a new town, having no one, and having pain 24/7.

Every 3 or 4 years, she would break off the friendship.  Her reasons were specious; it was just something she needed to do.  Three or four months later she would call me as though nothing had happened and we would take up the friendship again.

It was clear to me that I needed to end the friendship, but I needed a friend more. Because my need was greater than the pain of the breakup, I went back.  And back again the next time. It was only after the fourth time she ended the friendship that I realized this was something that needed to be ended.

How many times do we look at the toxic people in our lives and decide our need of them is greater than the pain and problems they cause?

The pain often makes us needier then we might otherwise be; the ability to get out and about harder for us, the need for comfort and care greater than accepting that the succor is not coming or comes in a hurtful way.

“You are malingering” “You’re making this up.” “It really doesn’t hurt that much.”  “Why can’t you do the shopping today, why do I always have to do it?”

It is hard to spring clean.  But it needs to be done.  Whether I shampoo a rug, throw out those torn stained favorite pair of pants or say goodbye to people whose lives have been intertwined with mine but are hurters not helpers, I am always surprised at how much better I feel.

It is almost funny when I realize how hard it is to think about doing these things, how difficult they look and feel in my mind, and how much easier they make my life once I have done them.

___________________________________________________________________________

This is reposted from my new column for the National Pain Report.

IDIOSYNCRASIES.

It occurred to me after reading the suggestions people gave me for how to deal with the issue of my eye pain being t riggered by a lit candle that one of the problems we face is the individuality of not only the pain, but the minute specifics of it.

The candle hurts my eye.  Can you patch it?  Can you wear sunglasses?  That should fix it.

Normally, in the common world, it would.  In my world, it does not.

It is not the brightness of the candle.  Well, it is the brightness but not the brightness alone.  The movement of the flame is the problem.

My eye cannot tolerate movement as I read or follow someone walking, for instance.  For some reason, no one has figured out why, the pain is also quickly, immediately, triggered by movement in front of the eye, even if the eye itself is not moving.

There are some forms of M.S. where the person has trouble walking one day and the next they are fine (before it happens again)

You had the cane on Wednesday.  You didn't need it on Thursday, so why are you using it today?

(When I used a walker for a few weeks, after a surgery that left me very weak and more balanced impaired then usual, I was very surprised when a man I vaguely knew from my apartment building saw me on the street.  He stopped me.  "I saw you in the foyer not using your walker.  Why are you using it now?" I was flabbergasted, that he noticed and even more so that he questioned me about my use of it.)

Some days our pain is bad, or our physical abilities less then the day before. 

I understand why someone might question what they do not get.  Your eye is not moving.  Why would watching someone fan themselves hurt your eye?  You could get around yesterday but you can't today,.  How come?  You were able to bend down to tie your shoes an hour ago but you can't pick up the towel on the floor now?  It does not make sense.  I know even for me it sometimes seems surreal.  But, it is real. 

How do you explain?  Do you need to explain?

Life is full of inconsistencies.  Why should chronic pain be any different?

What do you think?

THE HOLIDAYS. WHAT'S WORSE -PRETENDING OR BEING ALONE (or both)?

I pretty much hate the holidays.  I hate being alone.  I have been invited 2x over the past few years to someone's house, not family, and that was lovely.  I was so happy to feel "a part of" if only for the few hours we spent together.

I think about holidays from years ago.  When I was invited by my sister to her home where the whole family met.  (I have not been invited by family for probably at least 14 years.)

It was years after the pain started and years after they had effectively abandoned me.  What do you do though?  If  you have no one and you do not want to be thought of as the person they tell people you are, you go, thinking maybe this time it will  be different.

But it is not.

No one asks "How are you doing?"  They ask the perfunctory, "How are you?" but they do not want to hear more then "Fine."  The bright lights hurt my eye.  Asking if they could not have the candles lit is met with an eye roll and "Really?  I mean they can't bother your eye that much."  What do you say?  To persist in asking for what you need is interpreted as argumentative and hypochondriacal.

They do not want to know.  They do not want to hear.  They do not want, at the end of the day, to help.

So many of us write in the support groups about the nastiness, the refusal of belief, the withholding of help or caring that is encountered when we deal with our families.  When we go to the dinners and holiday festivities.

It is a hard decision.  It comes down to the question: What hurts less?

Is it more painful to be there and increase the pain so I can be with these people?   Or is it more painful to be alone and reminded by TV and the internet and your own thoughts that others are with their families, celebrating.  (Of course it is easy to forget about all the "well" people who have the same dysfunctional holidays and emotional pain.)

Is it more painful to increase the level of physical pain so we can be with these people because there is no one else; or is it better to stay by ourselves and not feel the emotional pain, and the physical increase of pain that is a part of being with and doing?

What do you do for the holidays when you have these issues?  If you are lucky you have friends who invite you over but sometimes that is not possible, or available.  How have you come to grips with it? Has your decision been helpful or painful?

part 2 RESPONSE TO AN UNHAPPY DOCTOR

As you may recall I received this reply to my post about doctors, patients and money from someone who self-described as an anaesthesiologist and pain specialist:
"...I get lied to and BS'd everyday by people trying to tell how to do my job, which usually involves them telling me that the only thing that will work in Oxycodone, not PT, CBT, BF, TENS, Diet, Sleep modification, Smoking Cessation, daily exercise, leaving an abusive spouse, stopping a job that is eating up their mind, soul and body, etc..."

I wrote in response a post about the need for equality and partnership with the doctor,  as opposed to being adversaries.

As a chronic pain patient, what is our obligation?  Is it different then the relationship between cancer patient and oncologist, endocrinologist and diabetic, general practitioner and someone with a cold?

To some degree I think the answer is "Yes." 

In the other examples the doctor tends to have visible, lab based proof of the patients' problem and condition.  He needs to rely on a cancer patient for the truth about their level of pain, but in that situation the truth is, by all accounts I know, accepted as reality.  Cancer and pain is a known combination. 

We, on the other hand, have to be believed to be treated. 

My disorder, trigeminal neuralgia, used to be very specific with few, if any, parameters outside of the textbook definition and description.  (They have extended the signs and symptoms so it is now no longer an automatically immediately identificable disorder.)

CRPS (chronic regional pain syndrome) does have visible effects.  Fibromyalgia, soft tissue injuries , other invisible treatment resistant pain often does not.  Treatment is reliant upon trust.

That trust is often broken when a patient comes in and says "I need oxycodone (or vicodin, or codeine, or other opiate)."  It  can also be breached when the doctor says, "Let's try PT (or another treatment) and the response is "I did that.  Didn't work.  I won't try it again."

The truth is some patients are liars, BS'ers, untrustworthy as angry doctor said.  Even for those who are not it can be hard to be believed  if we are demanding.  To go again to the cancer analogy, it is, I am going to make an assumption here, the rare person who says, I need tomaxacin (or other specific chemo drug, or drug.)." 

How do we fix this? 

Instead of asserting I need, I want, we need to work together.

"I have been on vicodin and it has helped me greatly.  I would like to continue with that drug.  What is your position on it?"  "I have tried PT, etc and have not had a benefit from it.  Is there a reason you believe it now can help me?"  Make it a conversation, not either side bullying the other.  They may have forgotten, or not know, what has been tried, they may have another therapist who works in a different way, the name of the treatment sounds the same but it is not, and so on.  They may have opiod policies with which you disagree.  If you decide to stay it makes no sense to ask for what will not be given/prescribed. 

"How dare he not give me that!"  "I know what I need and he has no right not to give it to me."  I have heard people say, "I am going to sue because he did not give me what I said I needed."

There is sometimes a belief that a physician must give us what we want, no matter what.

Angry doctor is sad.  I feel sorry for him.  He soes sound, as one commenter wrote, 'burned out'.

Nevertheless, his unwritten point can be valid.  If we are demanding we may well seem like liars and BS'ers.  We both, doctor and patient, have a responsibility to bring common sense and conversation into the examining room. 

And leave the demands and tantrums outside.

What do you think?

WHO CARES? (The sarcastic vs the potential.)

"My (family, friends, colleagues) do not support me.  They say mean things.  They do not 'get" it." I read this over and over again in the online support groups.

I know the pain of having people turn away.  And the pain of thinking if I change something in me, if I do something...different, it will make a difference.

Recently I have been thinking about the people who are (were) supposed to be my family.

My father never believed in my pain, in the birth defect that caused it, or the diagnosis that was repeatedly proven.  Even when he was dying of ALS.  When I thought the end to our lives is when things can turn around. 

I sat next to him on the couch, my medical records in my lap.  I knew I would have to show him, for the umpteenth time the proof he had already seen, and been told, by me and by my doctors.

"I need you to acknowledge my pain and my disability.  And that it is a medical problem."  He had tried many times to convince me, and others, that my problem was psychiatric.   (My parents are first cousins.  I think a big part of his refusal to accept it was that he blamed himself.  I could be totally off on it.  There are other potential Freudian reasons.)   When my neuroophthalmologist showed him textbooks that described and showed pictures of why I had the pain his reply was swift.  "Don't you think she just needs a good psychotherapist?"

This conversation was no different then any other.  "I do not believe you are disabled or have this pain."  What was the point of trying?  Even when dying he would not, could not accept the truth.

My siblings never came to the hospital, sent a card, or flowers.  (That is not quite true.  SisterA came once, days after one of my brain surgeries.  We had not spoken in years but her major question  was "I love you, do you love me?"  I answered before giving thought to the question.  It was the only answer I had.  "I don't know.  I don't know you."  She was horrified by my answer, or angry.  She left.  That was the last I heard from her for a long time.)

I have written of the answer I got from my brother in law when I stupidly sent an email asking what I had done to sisterA that she was never there for me.  He replied: how you treated her and your parents.  But I treated her well.  Out of the blue she called me and asked that I go see her paternal grandmother (my siblings are half so this woman was not a relative to me.), who lived in NYC, as did I, a woman whom she had not known since she was a young child, if then.  I agreed, going to show her pictures  of my sister's children, this woman's grandchildren.  She was hoping there would be a response but there was none.   She never called me again after I told her what the woman had said, "It has been way too many years.  There is no reason for me to know them."

I saw all of my siblings at my mother's funeral, and my father's, but they essentially ignored me.  even when we had to get together for dealing with the will, when there was terrible behavior directed at me, not pertinent to this post.  (I had one more surgery after that, this time for my neck.  It was in such bad shape from a previous surgery that I was told "You can be paralyzed just walking down the street."  This was right after my mother died.  I told them about the surgery and how bad it was going to be.  No one cared. 

SisterB came to see me at my home after I had the operation.  I was wearing one of those large neck braces, was on a walker, terribly thin "fragile" as a nurse called it, and could either talk or breathe but not both.  She asked me "Did you almost die?"  I had been in a coma but do not know if I did.  "I don't know."  She stayed for a few more minutes, left and never cared enough to visit or call to see if I was doing better.)

After that  I heard from none until my brother sent me an email telling me that sisterA was very ill with cancer, and dying.  He also made sure I knew that he had taken her into his home for a period of time while she was undergoing radiation therapy, apparently an effort to reinforce how much they had not done for me.  It worked.  It  hurt.  A lot.   I left a card and gift for her at her house but it was never acknowledged, yet at her funeral a friend of hers told me how much sisterA had appreciated the gift and gesture.  Very strange, not a word to me but to someone I barely knew?)

I will not go into all the examples of their behavior, ways they treated me that were outright mean and nasty, or just lacking in any compassion, empathy or care.  (It is slightly cathartic writing it but I do it mostly to give a picture to the point of my posts.  It is interesting I feel I need to defend telling my stories, even here on my blog.)

Which brings me back to the word indifference and why it is important in how we react and respond to the ones who treat us so poorly.

After my book was published I sent an email to all 3 of them.  Since none had contacted me for many years I did not think they would care much about the fact that I had written a book.  I did want to give them an opportunity to read it and see if they felt I had lied about them, maybe libeled them.  If they did I wanted to deal with it now rather then later.  They never responded, never requested a copy.  My book publisher has a page on their site that allows you to see where orders are coming from.  None indicated books were purchased by any of the three. 

The opposite of love is not hate.  It is indifference,

My siblings are completely and totally indifferent to me.  When I think about wanting a family, about having a family, in fact seeing on facebook that I have great nieces/nephews that I have never met and probably have no idea I even exist I am hurt, to my quick, to be honest.  But then I think do I want to try and know these people?  The part of me that is dying for family, for connection, says "Yes." but the logical, sensible part of me says "No".  I do not want to be slapped down again as when I have tried in the past.  And they are indifferent to me.  I am no more to them then a gnat on a doorscreen, if that.

So what do I do?  What do we do when we have this gigantic need for family, friends, colleagues, to know our suffering, our pain, the emotional and spiritual as well as the physical?

I think we need to look at each of these people with whom we want the relationship, or who have hurt us, going out of their way sometimes, and look at the interactions we have had.

Sometimes the nastiness, anger, denial, disbelief is from someone that we know has feeling for us.   With them it may well be worth the effort of trying to get them to understand.   Other times, when looked at in the clear light of day, they have no sentiment for us. 

If it is the latter we need to let those people go. 

Because they let us go a long time ago.

What do you think?

RESPONSE TO AN UNHAPPY DOCTOR.

I was surprised by the vehemence of a reply I received to my last posting.

The person who commented said he (she?) was a certified anaesthesiologist and pain specialist.

He said he gets "lied to and BS'd everyday by pain patients." who tell him how to do his job, meaning saying only oxycodone will help them.  They are not interested in his prescriptions of diet, sleep changes, TENS unit, life changes of leaving an "abusive spouse" , job they hate, etc.

He feels that the "real injury" is a "broken soul".

I feel bad for this doctor, and for his patients.

He sounds burned out.  Maybe he has been yanked over the coals by too many patients for too long.  It is sad because the term "broken soul" says to me he has empathy and sensitivity to the emotional pain people experience.  Or did have at one time.

This is one of the big problems with getting good treatment for our pain.  A doctor sees enough of the fakers and poseurs and he has had enough of us.   He then lumps us all together, those with legitimate pain and those who may have other agendas.

The point of the post was not the issue of money per se but that we need to be partners.  I referred to the fact that since we pay the bill we are a doctor's employer.   He tells me how much his education cost to "become your employee."

If I go to a lawyer I pay a fee.  We do not discuss why he decided to go to law school, how much it cost or if he is still in debt.  I hire him.  Often the first meeting is without cost to see if we can work together or if he can help me.   He either takes me on or he does not.  If he does, I pay his fee and am his employer. 

My friend owned a restaurant.   She worked like a dog, each and everyday.  She may have owned the business but the customers paid her for their food; they became her employer.  If they complained she did not say  "I was up at 4 am to get ready for you, this store cost me thousands of dollars to buy, you have no right to complain."  She worked with them to make it right.

I get the issue of  'it cost me hundreds of thousands of dollars to go to school.  I work to pay my loans back and then live a good life with the profit I make.'  That is very legitimate.  But.

But I did not make you go to medical school.  I did not force you to choose your specialty.  There is a sense of entitlement when you say I do not care if you pay me through insurance premiums or taking the money directly out of your wallet, I know better then you and there should be no issue of being partners in this endeavor to help you.

(I will write a part 2 about our responsibility in this relationship.)

DOCTOR , PATIENT,.AND (the unspoken) MONEY.

Sign in doc's office: "If you are a new patient and have a high deductible you will be required to pay $100.00 at your first visit."

I was incensed when I first saw it. 

For the most part insurance keeps the money part of medical care invisible: some of us may have to pay a (usually) small deductible for each visit.  Rarely do we have to pay a lot of money to our doctors, face to face, as it were.  (But it rarely is, if ever.)

I started thinking about the sign.  Wait a minute,  they are saying they do not trust new patients: maybe they will cheat me if they have to pay a good deal of money because of the kind of insurance they have.  I had better get at least some of it upfront.

But he (or she) is my doctor.  This person, whom I am invited to call by his title but who usually calls me by my first name.  This stranger who asks me to reveal what may be intimate information about my body, possibly about my life, but about whom I know nothing equally revealing.

We often feel like supplicants, begging, pleading to be healed, the doctor opening to us his font of knowledge and bag of balms.  We lay ourselves bare, hope exuding from every pore.  The relationship is slanted.  Money makes it, well, icky.

It can be looked at as a form of prostitution; the referring doctor (or hospital  friend, stranger, or even phone book)  the pimp, the doctor the prostitute, and us - the client with a bodily need that requires a fix.

In that scenario money is always the motivating factor. (I know the analogy is off a little, kickbacks to referring doctors are illegal)

For those of us who see the relationship as a skewed one, usually in favor of the doctor, maybe it is time for us to remember the money we pay, whether it is $0.00 (but remembering the cost of our insurance premiums) , $15.00, $100.00, or more.  This makes us his employer.  It gives us a higher standing then a dependent 'help me' petitioner.

We need not necessarily like our doctor but at a minimum, hopefully, we respect his knowledge and ability.  And we trust him.

The other side is that he must be someone who trusts us; our knowledge, intelligence, and autonomy as a person.

In most other business relationships there is an equality between the two parties.

We need to bring that to the medical relationship as well.

A 12 STEP ANONYMOUS PROGRAM FOR THOSE LIVING WITH CHRONIC PAIN. REALLY??

I stumbled across this site * and could not believe my eyes.

The founder is a physician who has worked in the field of addiction medicine for 31 years.
He initially refers to chronic pain patients who have become addicted to pain medication.

Okay I am with him so far.

There is a minority of pain patients who will become addicted to narcotic medications. The number is higher for those who have a history of addiction. My problem is that it is not for those who have a combination of chronic pain and opiate addiction, but specifically for those who live in/with chronic pain.

He makes a direct correlation between those who are addicted to drugs, in general, and those with chronic pain. This is where he loses me.

His first of 4 similarities between those with chronic pain and those fighting addiction is "INTRACTABILITY."

"An addict never stops being an addict. For instance there is no such thing as an ex-alcoholic." Addicts have a lifetime fight on their hands. They need all the help they can find. Only the strong survive. The addict doesn’t want to hear this but that is the reality.

Chronic pain patients never get over their pain. Oh at times it is better but the pain is always there. Unfortunately it is a lifetime struggle. Their pain is intractable. Chronic pain patients do not want to hear his."

No one wants to hear whatever disease/disorder they have will be a lifetime disorder but unlike addicts, who have to deal with a lifetime of potential craving for their drug(s), I know of no one with chronic pain who craves their pain. (There are always the rare people, as with any group, who get a "benefit" from their pain. That is very far from the norm.)
Most of those with pain do not want to accept the intractable aspect of their pain. I surely do not, and have not for that matter. But most of us do not go to any length, no matter what it is, to get relief. We do not go into back alleys, we do engage in illicit behaviors to get treatment, we do not beg doctors to treat us, no matter what the cost.
There are also many with chronic pain who do in fact get over their pain. Surgery, treatment, medications can and do work for some. If and when it does there is no longer a fight or slide back into chronic pain.

Next is "PRE-OCCUPATION"

This shows a basic misunderstanding.

He writes "The alcoholic’s life revolves around alcohol. ... The addict thinks about little else other than the next drink of fix."

He goes on to state, unequivocably, "Chronic pain people are absolutely obsessed with their pain. “Pre-occupied” is too tame a word. Everything revolves around their pain. Their home, work and social life are severely affected by chronic pain and it is a lifetime sentence."

Being 'pre-occupied" is very different from working around the pain to create your day, your life. Our lives are severely affected by the pain. That does not equate to pre-occupation.

"LOSS OF CONTROL" is his next cross-similarity.

I need to use his entire quote: "The addict simply cannot control his or her drug use. The end result is trouble. There’s trouble at home, at work and there is no social life. For the active addict, the prognosis is always a downward spiral.

Chronic pain people lose everything too. Personal relationships go down the drain. Work life becomes a thing of the past. Social life becomes non-existent. There is no end to medical bills. Surgery after surgery, block after block, pain program after pain program and all result in disappointment and despair. Chronic pain people cannot simply get on top of their pain. They have to learn to live with it."

That we lose a lot is a given. That we lose it all: personal, work, social, is an indictment rather then a wonderment of the lives that many still claim, continuing to work despite horrendous pain, having spouses, children, relationships. Shame on him for not being able to recognize the fight that allows so many to continue to have good lives, deep relationships, in spite of the pain. By doing so they have learned to "live with it".

He also presupposes that we have no intelligent ability to say "No."; to treatments, therapies, medications. In a way it is applaud worthy, his getting an underlying truth: that pain is so incredibly hard to deal with, to live with, that one would want to accept anything offered. The other side of that truth is that, for the most part, we are educated patients, not exposing outrselves to any and all, because we understand the downside of many of the things offered.

He also has another lack of understanding in this comparison. "all (treatment, pain, medications, programs) result in disappointment and despair". That is an absolute fallacy. Many peple do find some form of benefit from their treatment(s). If you're lucky 100%, if less lucky, less then that, and very unlucky, a low or nil percentage. But he speaks in extremes and ignores a major part of the chronic pain population.

And his last "CONTINUED USE IN SPITE OF ADVERSE CONSEQUENCES." "Addicts are in trouble all the time", he writes. "...They can’t use with control, so use leads to abuse and trouble. An addict knows better intellectually but will continue to use. The end result is usually death. The terribly sad thing is that more often than not he or she drags those around them down with them

Chronic pain people follow the same pattern. I remember one patient who underwent over 25 major surgeries. When he was cut off prescription drugs, he drank a minimum of a fifth a day, often two. Post treatment, he was found dead six months later."

He uses an anecdote to make his point. An anecdote does not speak for more then the person spoken of in the anecdote. That is not to say the person he writes about is a singular story. It is to say that it is not the majority but a vast minority.

He ends this part of his article stating "Chronic pain people keep making the same mistakes. They keep hoping for some magical surgical procedure, some new medication, some miraculous entity that will take away their pain and who can blame them? The string of adverse consequences never seems to end. Sound familiar?"

I think he is right. Most of us do hope for that answer. He is wrong in that most pain patients do not stop their lives waiting for the magic bullet.

12 step programs have worked for millions, he wrotes. Absolutely.

Sharing of stories and experiences never hurt anyone, he says. Right again.

But, is there truly a one to one connection between those in chronic pain and addicts?

Only if you believe that those in chronic pain do not have a physical condition that often has stopped their lives in its track. Only if you believe that chronic pain is the result of environment and maladaptive behavior. Only if you believe that the majority of us have put our intelligence, logic, and comprehension on a back burner, accepting anything and all things that are offered to us without considering the potential implications and adversities that may make our pain even worse.

And why an anonymous program? I do not hide, usually, if I have diabetes, cancer, kidney disease, etc. Hopefully I let people know. I ask for help. They cannot offer if they do not know.

Society frowns on alcoholism, drug addiction, sexual, gambling addiction. Most do not declare it. It is a societal prohibition.

From this doctor's perspective, those in chronic pain should be looked on in the same way.
____________________________________________________________________________

* http://www.chronicpainanonymous.org/about-us/physicians-opinion/

"WE NEED NOT LIVE IN FEAR"

This was the sermon subject this past Sunday morning.  The minister talked about fear 'consuming' us, of not going forward because of it.

My thoughts, of course, immediately went to thoughts of the life with chronic pain.  How irrelevant and antithetical to the pained life.

Many of us are consumed with fear.  We live each and everyday, often each and every minute, filled with dread - or at least mindful of fear.  If I do thus and so how much pain will I have?  Will I be able to go to the store, will I have enough meds,  do I want to take extra medication to do thus and so, and so on.

I no longer have the spontaneous/triggered trigeminal neuralgia pains.  I do have the unpleasantness of 'phantom pain'.  Even though it is nowhere near the horrendousness of a tn pain I still flinch when  someone or something comes near my face. 

Before the service I was getting my music out of the cubby in the musicroom. 

I am short.   Ben, a tall choir member, reached over my head to get his music from a higher level cubbyhole.  He had no reason to wonder if he might touch against me, to wonder if touching against me would be a problem.  Immediately I tightened up, my breath stopped, Oh no he's going to touch me.  He is going to set off the pain.  He did not.  I was fine.  Was there a reason for me to fear?  You bet ya'.  That little/light touch would set off discomfort.  The discomfort would grow as I used my eyes to get through the quick rehearsal and then service.  The more I used my eyes, the more the eyelid on the pained side would swell, the sooner the discomfort would be outright pain.  The more the pain, the more medication I would have to take,.  The more pills I took the drier my mouth, the cloudier my mind, the lower my alertness, the harder it is to stay awake.

Living in fear creates its own stressors on top of the pain.  Is the fear we experience really fear?
For those of us with chronic pain is fear synonymous with acceptance?

That sounds counterintuitive - but think about it.  If I accept that if someone touches a part of me it will set off pain then I am accepting the reality of my life.  That includes accepting fear as a symptom or sign of our pain condition(s).  (With trigeminal neuralgia it is a sign.  I used to balk at any pretense of touch to my face.  My neuroopthalmologist used to use that as a teaching moment for his residents, See how afraid she is to be touched in that area?  That is trigeminal neuralgia for you. )

We do need to live in fear but, if we can tame it, if we can use the knowledge of what causes our pain to reduce our exposure to the situations that foster it, the pain losses some of its control over us and we become more the captain of our fate.

TO ANALYZE THE BEGINNING IS POINTLESS.

Yesterday I was going downtown to attend a trigeminal neuralgia support meeting.  There would be a speaker and I wanted to give him a copy of my book.  His book, and speech to us, asserts the pain of trigeminal neuralgia can be helped by nutritional changes,.  These supplements may include  "daily shots of B12." among other large amounts of vitamins and minerals. 

He is a retired cardiovascular surgeon.  TN is a neurosurgical/neurological condition,.

I caught up with him before he left and was able to give him my book.

He told me he had a relative who had TN; but he only works with relatives and friends.  Based on his belief in this "treatment" it was hard to believe he really understood what tn was like.  I hoped the book would help him know the true pain of it.  (I do not know how bad the tn of his relative was but his vitamin, mineral remedy indicated to me it was not to the level many of experience.)

As I rode the train I opened the book to the first page.  I have never forgotten the moment the first pain struck but then I thought back further to how I was feeling at that time.

I had just moved to NYC.  I had a job I hated and was fired from a few days before Christmas (the social worker I worked for came in the office one day and said "I can see the contempt you have for me every time I walk in the office.  You're fired."  He was right.  He was a primal scream therapist.  I felt he was taking advantage of clients and the therapy was a farce.)

Maybe, I thought for the thousandth time, the pain started because I was so depressed at the time.

My pain is from a birth defect.  Maybe the stress finally set it off.

So many of us think this way; it is something I did, the way my life was at the time, the way I lived my life.

I thought about it a little more.  The first surgery worked, 99.9%.  I got a job as soon as I was allowed.  The job was okay, a clerk in the advertising department of HOUSE BEAUTIFUL magazine, but I made two friends, almost immediately.  I was happy.  I was not acting but I had a job, I had friends, I had a salary.  I was enjoying my life.

And then, out of the blue the pain came back.  There was nothing I could blame it on.  It just 'was'.

How often have you had that thought, if I only had not (been, done) that the pain would not have started?

It is hard not to find a reason, it is easier when we think we have one, even if it means putting the blame on ourselves.

The truth is, not matter how we felt, no matter what we were going through, the pain may be our burden to bear, but the blame is not ours to shoulder.

A GROUP OF DOCTORS WANT TO DECIDE FOR ALL PAIN PATIENTS

"I could imagine the cocaine high.  I hadn't touched the stuff for 6 months but I had never stopped craving it."
He took the cocaine,  liquid on his tongue.  "(His) anxiety melted away.  (His) level of alertness rose." (from PROJECTION by Keith Ablow)

"I had to take codeine for the pain.  My mouth is dry, my head feels fuzzy, and I just hate this feeling the drug gives me but I have to take it."
"I was on up to 14 grains a day for 12 years and the day after the pain stopped, I stopped taking the codeine and I was fine."

The first is addiction, from a novel. 

The second is my experience.  It is also what I read and hear all the time from other people with chronic pain.  We hate the drug, we hate having to take them, and we hate the feeling.  (My experience of getting off without problem may be an exceptional one, the chances of some form of physical dependence was certainly possible.)

Yet some doctors are trying to take away our physician's ability to write prescriptions for these drugs in the way they feel their patients need to have them.  Some doctors want to take away prescriptive autonomy from physicians trying to care for their patients in the best way, and sometimes the only way, they know, the only way they have.

The Physicians For Responsible Opioid Prescribing has asked for the following changes to the way opiates are prescribed and for what type of pain:

"SPECIFIC ACTIONS REQUESTED FOR CHANGES TO OPIOID ANALGESIC LABELS:

1. Strike the term "moderate" from the indication for non-cancer pain.

2. Add a maximum daily dose, equivalent to 100 milligrams of morphine for non-cancer pain.

3. Add a maximum duration of 90-days for continuous (daily) use for non-cancer pain.

It continues with "STATEMENTS OF SCIENTIFIC BASIS FOR PETITION":

1. Over the past decade, a four-fold increase in prescribing of opioid analgesics has been associated with a four-fold increase in opioid related overdose deaths and a six-fold increase in individuals seeking treatment for addiction to opioid analgesics.5
2. Prescribing of opioids increased over the past 15 years in response to a campaign that minimized risks of long-term use for CNCP and exaggerated benefits.

3 Long-term safety and effectiveness of managing CNCP with opioids has not been established.

9 4. Recent surveys of CNCP patients receiving COT have shown that many continue to experience significant chronic pain and dysfunction.

5  surveys using DSM criteria found high rates of addiction in CNCP patients receiving COT.

6. A large sample of medical and pharmacy claims records found that two-thirds of patients who took opioids on a daily basis for 90 days were still taking opioids five years later.

7. Patients with mental health and substance abuse co-morbidities are more likely to receive COT than patients who lack these risk factors, a phenomenon referred to as
adverse selection.15

8. Three large observational studies published in 2010 and 2011 found dose-related overdose risk in CNCP patients on COT.

9.COT at high doses is associated with increased risk of overdose death18, emergency room visits19 and fractures in the elderly20. "
((http://www.citizen.org/documents/2048.pdf )

I cannot respond to all of it.  I can to the issue of abuse and misuse, which is what they have been throwing at us (or against us) for some time now.

It is disturbing to me that the information they use is wrong.

Chronic pain patients rarely become addicted.  they may become physically dependent which is a completely different animal.  For instance one study found:
"The results of this evidence-based structured review indicate that COAT  chronic opioid analgesic therapy) exposure will lead to abuse/addiction in a small percentage of CPPs (chronic pain patients), but a larger percentage will demonstrate ADRBs (abuse/addiction and aberrant drug-related behaviors) and illicit drug use. These percentages appear to be much less if CPPs are preselected for the absence of a current or past history of alcohol/illicit drug use or abuse/addiction." 
(http://www.ncbi.nlm.nih.gov/pubmed/18489635 )

This is what most of us already know, a small number of people with chronic pain develop addiction and the larger number that they say abuse/use illicitly tend to have a history of abuse.

That leads (me) to the conclusion that it is not the majority of pain patients but a subset that most doctors should be already careful with because of their history of substance abuse.

They also rely on the statistics: "four-fold increase in opioid related overdose deaths and a six-fold increase in individuals seeking treatment for addiction to opioid analgesics."

Sounds scary but there is no proof or data included that makes it a 1 -1 relationship, that the increased number of people given the drug(s) are the same as the ones who are overdosing or seeking treatment for addiction.  (And seeking treatment is not synonomous with being diagnosed as addicted or being treated for addiction/abuse.)

They also talk about overdose risk, that is the case with many medications, not just opiods.  I am not aware (which does not mean it is not out there) of a similar petition from physicians that, say, psychiatric medications, or even aspirin or ibuprofen, be limited to 90 days and specific dosage because of the risk of overdose.  All medications have an overdose risk, specifically if you give them to people that should not be receiving them in the first place.

That is part of a physician's job; to weed out those patients he sees as someone who would be at risk if given a certain drug, a specific dosage.

I find this petition appalling.  Once again it is chronic pain patients who are under attack.

It seems more relegated to the fallacious War On Drugs, then a medical issue, even for these physicians behind the petition.

If you are concerned about this rrequest to the FDA you can make comments at this site: http://www.regulations.gov/#!submitComment;D=FDA-2012-P-0818-0001

SHARING (or not)

To share or not to share.   It is a strange dichotomy for me since my book is out and many people have read it; strangers know the most intimate details of my life.

In real life, with people standing in front of me, I am unsure about what to share.  Some of that comes from my life experience; a family that ridiculed and pooh pooed anytime I was ill.  It also comes out of the experience that many of us with chronic pain have, the veil of invisibility.  If we do not say "I am in  pain right now and cannot..." no one knows we are in pain and cannot act in a way  that feels understanding or accepting.

I mentioned this to a friend, I do not really know what to say and I am afraid to say it, expecting disdain, definitely non understadning.

My friend says to me, "Yes, you do give off the impression, do not ask me."  I get that.  I do not want it to be the main topic of conversation, I do not want to be seen as 'sick' or unable.  But when I am unable I have not opened the door to saying "I cannot right now."  I have also cut off a line of intimacy, of allowing someone into my life.  It is hard to complain of being alone when you may well  have set the ground rules for nothing else.

Many of us write in support groups, posts, blogs, about how bad the pain is, how hard today was, how they are mis and not understood.

Is it us?  It is easier to blame the pain, to blame others, then to look ourselves in the face and ask - "Is it me?  Am I setting the line in the sand that makes it feel it should not be crossed?  

It comes in two colors: talking about it too much so people do not want to talk to us after a while because it is all all pain or negativity or trying not to talk about it all so the other feels a wall that should not be breached.

I have yet to find a good middle ground.  Mine is the wall I think, no, I know - I do give out that vibe, "Don't ask."  I try to hide taking the pain pill, I withdraw even further when the pain is bad.  I do not give others a chance to show they do 'get it."  When they have shown me I get hot, embarrassed, uuncomfortable.  The vibe sent out is not 'thank you for understanding.  I am so appreciative of your empathy and letting me know you see the pain and my struggle."  It is more "Oh please let's not talk about such things."

Sometimes I write to talk to 'us' but also to talk to me and set myself straight.

I just wish I listened harder to my words.

WHAT DEFINES FAILURE?

I just read this in a book, "there is an allotment of failures in any life before the life itself becomes a failed one."

I have often thought of my life as a failed one.

My sisters first turned on me when it looked like my life was going to be a success, that it was going to turn out the way I wanted.  When the pain started I thought maybe the failure of my life, of my plans, would make a difference.  It changed nothing.  Including my definition of my life as having failed.

Looked at in the context of what ius commonly called success: working at a job you like, a husband (spouse) or life partner, possibly children or extended family, friends who are there for you and so on, my life is not a success.

When I read what many people with chronic pain write, in posts, blogs, emails, support groups, I see repeated declarations of 'my life is a failure, I am a failure."

What if we changed the definition?  

Fighting, long and hard, against daily pain, against the challenges it puts in our way, day after day.  Is that not a success?  Feeling that some of the challenges are not possible to overcome, that does not nake us a failure, it lets us pick and choose our battles.

I think of the many surgeries I have had, having to go through most completely alone, including making the initial decisions to have them.  I did not fail.  I did not turn tail and run.  I faced the pain and the choices, many with risks that were scary.  There is not failure in not going ahead with procedures, treatments, etc: the success is in making the choice.

Many of us have to decide, day in day out, sometimes by the hour or even minute, what we will do, what we can do.  For some of us the first decision is can we get out of the bed or is the pain too bad?  The choice-making is the positive, even when the choice is I need to stay in bed right now.

I look at my life.  By all accounts, by the ones I use - it is a failure.  But when I look at it the way others have told me to; I wrote a book, I started a women in pain awareness group, I continue to fight the pain, by taking the meds, by doing some things I know will make the pain worse but doing them anyway, I cannot bring myself to say it is a success.  I can say I have not yet had my allotment of failures.

It is hard sometimes to not just see the negative, especially when you live with chronic physical pain.

If we see our life only in gray and black, pain and more pain, and refuse to let in the light of the good things - even tying our shoes, walking for 10 minutes, or, for me, reading and using my eyes before the pain hits, or that happens in our lives; time without pain, a ride on the car, talking with a friend, then we have let ourselves say "my life has failed."

There is a picture of a vase that is also a picture of a face.  You have probably seen it.  Substitute the vase with your picture of failure and the face with your definition of success.  Whether you see the failure on the outside and success contained within or vice-versa, maybe now is a good time to look at the picture from the other direction.

THE SLINGS AND ARROWS OF YESTERYEAR.

I was listening to my friend Nancy talk about her pain and how bad it was.   The longer she talked  the more upset she became and the more upset she became the more she added into the mix.
A lot of it was happening in the here and now: "My mother went to the store and never even bothered to ask me if I needed anything.  She knows how much pain I am in.  How could she?"   The people she needed to help her seemed to be clueless and uncaring.

Then she thought about other times she had been in pain and needed help.  "Remember when I sprained my ankle that time a few years back,  she didn't even ask if I wanted her to come to the ER with me."

That took her back even further.  "And remember how my aunt didn't even bother to call me when I had my appendix out when I was 12?"  The more she recalled the more intense her anger, despair, and even pain,  became.

Her tumble down memory lane was all too familiar to me.  How many times has the pain been bad or I felt slighted because someone I thought should have been considerate of my situation was not, whose behavior has helped to make the physical pain worse (by insisting for instance that a tablecandle  stay lit despite knowing the movement and brightness of the flame inflames my pain).  And how many other instances of hurt, throughout my life, then crowd my thoughts?

What kind of siblings are they?  How could they have never been there for me, not even once, not even a card or a phone call?  Never mind that the last surgery was more then 12 years ago and the first slight by them over 33 years,  no, even way before then, before the pain started.  The psychic pain of no one being there for me for the surgeries, of acknowledging and believing the pain, usually tops the list of my litany of hurts.  My mind becomes populated with people from now, people from then, people from decades ago, instances where my feelings were not just hurt but torn apart, trampled, and thrown away.

Pain and hurt beget pain and hurt, the despair and upset of today the rock that gathers more and more weight as it rolls down, through memory and recesses of mind.

"Wait a minute, Nancy." I say to her, really talking to myself.  "Thinking about all this from other days and even years ago is of no help.  All it does is make it harder to pull yourself out of feeling the way you do.  You need to deal with the issue that is on the table now, not all the ones you have experienced throughout your life."

Closing down the feelings is never a good idea, it is a terrible way of dealing with our experiences (disclosure - I am a master at doing this) but there is a saying "you need to pick your battles".

Even when the battle is with ourselves/with the pain, we need to pick and choose - to put those that are not a part of the here and now into a mental box, ready to be dealt with when we are not so embroiled, emotionally and physically, with the pain.

LOOKING ASKANCE. IT'S A GOOD THING..

When I was younger (much) I hoped to be an actress/singer.  Starting out I worked in the chorus of 2 shows in a dinner theater.  The pay was less then the cost of the gas but it let me say I was a professional actor.

I was pretty much a namby pamby kind of gal: afraid of my own shadow, wanting to please, a go along to get along.  I was in the chorus, a part of the whole.  I did not need worry about being assertive or aggressive.

The first show was CAROUSEL.  The choreographer, Bobbi, did not like me.  Into astrology, she repeatedly said to me "You are not a Leo, I don't care if that is your sign.  You have nothing in you like the power of the lion." 

She was right.

Another dinner theater in the area and ours were at battle.  The other theater management called the liquor control board and told them we had dancers under 18.  Alcohol was served so all the younger dancers had to be fired, leaving a hole in the show..

I am not a dancer, and I was uncomfortable about and with my body.  Anyone could tell that by the high necked, long sleeved, long baggy shirts I wore.

Bobbi took me aside.  "Carol, since Gina, (the dancer who does the opening, a belly dance) was fired and you fit the costume you are now doing the belly dance."

"Oh no!, no!  I can't do that, the outfit is so sheer, it's totally revealing and, I'm even not a dancer."

"I don't care.  You're going to do it." she insisted.

I had no choice but to don the outfit, a very sheer top and separate bottom that showed my midriff.  I was the first thing the audience would see.

Oh my word.

We rehearsed and the feared first night came..  The music starts.  The lights comes up.  A spotlight glows down, on me, belly dancing (or more like bump and grind as a male castmate said.)

I always felt that Bobbi forced me to do it because she did not like me, which was true.  It annoyed her that I was a Leo but acted like a scared pussycat.

I changed because of the dance.  Being in the outfit and the center of attention for the first few minutes of the show had an effect.  I became somewhat more outspoken, less willing to be pushed around.  The change was obvious, Bobbi seconding it one night, "Now you're acting like a Leo."

I was thinking about this when the second show I was cast in at the theater, HELLO DOLLY, was on TV.

I always wondered why Bobbi would sabotage a show because of personal animus.  It felt like she was not thinking of the show: if I stunk that was okay, it would show me up. 

Watching DOLLY, some 30+ years later, for some reason, the thought changed.  Maybe she was trying to help me, forcing me to become who she thought I could be.

I have no way of knowing, after all it was decades ago.  It does make me wonder how many other times I have misjudged someone's intentions or their words, how many instances where I relied on the memory of what someone said or did, family member, friend, enemy or even doctor and allowed myself to feel the hurt, anger, and resentment again, like a burp after a bad meal, letting the bad taste engulf me.

It is often an issue of choice.  Do I choose to let this person hurt me again by looking at their behavior, rehashing their words, or do I take the opportunity to turn it around and see if there might have been a different intent?

It is said, you may hold onto the anger and other bad feelings but the person against whom it is held has probably forgotten about it years ago and could not care less.

It is worth putting whatever that held resentment and bad feeling is about into another light, twisting it to the right, and to the left, turning it upside down, spinning it around, and seeing if maybe, just maybe, another way of looking at it makes more sense.

YOU PICK THE SEAT YOU NEED.

Taking the next step and asking for help.  I read a post* about the first, and it started me thinking about the second.

The author of the post was writing about feeling afraid but doing it anyway.

She stood at the top of an escalator, the neck brace she was wearing making her nervous about safely navigating the moving stairs.  She stood "paralyzed" for the seconds that always feel like forever.  Finally she convinced herself to make her move.

She got on, and off, without anything bad happening.  Taking that gigantic first step, putting her foot out onto something that seemed so dangerous (and well could have been given the neck brace) took a tremendous amount of courage.

It is scary to take a leap or at times even a small step.   It took courage for her to do it. 

Sometimes asking for help is taking the next or first step.  Not gargantuan decision next steps, like getting therapy, or agreeing to new meds or surgery.  No, I am talking about help for getting through the simple things in life.

I used to think the two were mutually exclusive.    If I take that first step, or next step, it is on me.  It is a sign of independence, an action that says, "I CAN do it myself."

I have gotten to the point where I can say to people, "May I sit in that seat?" when we go to a restaurant, as long as I feel I know them pretty well.  I have even gotten brave enough to say after we are seated, at least some of the time, "Oh I'm sorry.  This is not a good seat for me."  Immediately people rise and say "We'll wait 'til you figure it out."  If people care about you, or are decent they are not going to laugh in your face, argue with you, "I'm sure it is not that big a problem if the sun comes directly into your eyes." or refuse.  They want to help, to make you feel comfortable so everyone can enjoy themselves.

I went to lunch last Sunday.  I arrived late, and the people we were to meet were sitting where I would have chosen to sit, facing away from the window.  They are elderly, the wife using a cane.  I was not going to ask to change seats, in that case, it was taking the step of not being comfortable, their comfort more important.

When I went to lunch the other day with someone I did not know that well I was astounded when he asked, "Which is the better seat for you?"  The question was an awareness that he knew the situation and had concern for my welfare.  I was not aware of his knowledge, it was a sign he listened to me when I spoke, watched when I was comfortable, noticed when I was not.

Picking the seat  has become my euphemism for other's comfort with me, and my comfort with them.  It is a wonderful feeling when it happens, a next step well worth taking.
______________________________________________________________________________

*http://traceysolomon.wordpress.com/

SYNCHRONIZED SWIMMING-How does it relate to us?

It is truly beautiful, bodies  moving in concert, gymnastics, strength, not breathing while doing twirls, faces in the water for what feels, even to me the watcher, like forever.  It is an amazing demonstration of athleticism.  And yet, I have often heard people say it should not be a part of the olympics, it is not a sport.
I beg to differ.

It is astounding.  It looks like a bunch of women having a good time swimming around and doing tricks.  The work that goes into it is invisible: who wants to know about the struggle, the difficulties and problems, the work that goes into creating the ultimate presentation?

How does that relate to us?

Many of us have dealt with people who disbelieve our pain, who insist we do things even after we say it is something that is beyond us because of the pain.  We also know people who say 'because you look good, you must feel fine'.

We go out when we can, we do our hair, we get dressed, for those of us whose pain is so bad even getting out of bed in the morning can be beyond us on some days, we mount the fight.  We get up, we go downstairs, we do our hair, we get dressed, go out in the world, and try and present a non pained face.

Most do not want to know the struggle, difficulties and problems, the decisions - can I wear the
shoes with the ties?, can I sit on this side of the church, can I go out today? -  that went into our being a part of the world, a part of a family, and for those of us who can, a part of a workforce.  They see the results, shoelaces tied, clothing clean, hair brushed, smiling face.   Even if asked "How are you today?" most do not want to hear the full true answer, "I have pain but I got myself here".

The synchronized swimmers are rightfully proud of all the work they put into getting their wonderful end product.  We need to own that pride too, in being able to get through the day, to be a part of.

The final result is well worth the effort, no matter what that is, even if  'only' starting the day.  We rightfully deserve that pat on the back, the applause that is often missing.

The people who see the end result; the lack of understanding that what you see is only the tip of the swim, only the end result of the struggle with our pain, miss out on knowing a major part of us, the part that shows what kind of fighters we are.