My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Friday, March 29, 2013


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?

Monday, March 25, 2013


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?

Saturday, March 16, 2013

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?

Monday, March 11, 2013


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.)

Monday, March 4, 2013

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.