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

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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.

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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.)