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"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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Wednesday, December 12, 2012


I wanted to sing with the choir this past Sunday.

It was the second week of Advent and time for the kid's pageant.  The choir was singing songs I love.  I was supposed to also sing with the other little chorus group we have.

The entrance of the choirs was going to be fun.  Someone would sing "Prepare Ye The Way Of The Lord." the shofar would sound, and the choirs process down the aisle, also singing "Prepare ye the way of the lord".

Boy, did I want to do it.

I also knew there would be pictures taken.  The church photographer would not be alone, parents of the kids came with camers, and flash, in tow.

A previous Sunday there had been a baptism.  I was in the choir loft.  Suddenly the little light that indicated someone's camera was getting ready to send out a big flash flashed out its beam.

It was like watching a car coming towards you, head on, knowing there was nothing you could do about it but wait, and suffer the consequences.

The light hurts my left eye, a lot.  I often wear sunglasses inside, including on Sundays when with the choir.

The lights in the sanctuary are bright.  There is also a candle sitting atop the altar that flickers .  Using my eyes to look up to the choir director, then down to the music, down to the hymnal and up to the minister, etc is a problem - seriously pain provoking.

So what to do?  Take the risk of the cameras causing me horrendous pain or give in to my want, and need, to sing with the choir?

The minister says there is no such thing as coincidence.  I do not subscribe to that but in this instance timing was all.

Just as we stood up and started to get into place for our procession the first flash went off.  I turned to the person next to me. "I can't" was all I said, fleeing the sanctuary.  Had we started processing it would have been very difficult to turn and leave without throwing off the entire choreography.

It is these kinds of things, little in the scheme of things, just an hour or so, but choir is all I have.  The ferocity of the want to sing, to be a part of, was intense.  The fear of the flashes from the cameras had its own severe intensity.  At the end of the day, as it were, pain always trumps whatever want or need I might have, unless the need is to get away from whatever it is that is setting off the pain.

It is a hard road to travel.  At what point do we, as those who live in chronic pain, make the decision of which is worse: the loss of what we wanted to do, have, be or the potential for the pain if we do (whatever)?

Saturday, November 24, 2012


"For centuries, many people believed women turned to prostitution because they suffered from a genetic defect." *

I received a reply to my last post from someone I know from another site.  He believes that chronic pain is the result of childhood emotional trauma.  His position is that it is not in the body but only in the mind.

I thought about his reply and the response in context with the post itself.

The doctor who spoke at the trigeminal neuralgia support meeting I referenced in my last post, was not trying to sell us nutritional supplements or a regimen.  That almost made it a little odder to me: he had nothing to sell but his belief that trigeminal neuralgia, and I am assuming (purely my speculation) other chronic pain disorders, will be bettered, if not cured,  by taking large amounts of supplements.  Some chronic pain may respond well to added nutrition, giving more energy, feeding the cells to help them replenish and recover for instance.  That might help the pain by strenghtening the body.  True trigeminal neuralgia does not work that way.

This is the problem of chronic pain.

People with degrees or practices have beliefs they conclude is the answer.  They do not consider the repercussions for patients/clients.

When I read the the quote about prostitution it seemed to be the same type of claim.  If there is no answer available you cling to the easiest, regardless of the truth of the problem, whether social, as with prostitution, or medical, as with chronic pain disorders.

Many of us have had doctors, despite outright proof of the what and why of our pain, still say "It is psychological."

These doctors and clinicians do not understand chronic pain or the pain disorders we bring to them.  They resort instead to a shrugging of the shoulders combined with an inability to say "I don't know."   By saying it is emotional or psychological they get to feel they have discharged their duty as a doctor or therapist - 'I gave her a reason for her complaints'.

I put this explanation into the same basket as 'you just need to deal with your pain through nutrition and supplements."

Neither has any basis in reality.  There are no studies that prove better nutrition and megadoses of vitamins and minerals are an antidote.  There are no studies that prove chronic pain is solely an emotional problem, or as the commenter wrote "Pain is a process of the mind following childhood emotional traumas, treatment resistant Pain is never in the body and the reason why it is so poorly understood and treated."

People with CRPS (chronic regional pain syndrome) for instance, don't have bruises, swellings, and discolorations as a result of repressed or active issues with childhood trauma.  My problem, trigeminal neuralgia, has specificity to the way the pain occurs, how it starts, what triggers it,etc.  These are all replicable among trigeminal neuralgia patients.  If it was an issue of emotional trauma the signs and symptoms would not be consistent among the patient group.

To say that those in chronic pain would benefit greatly by supplementation or are suffering because of emotional trauma is no different then saying to someone with diabetes "It is all in your head.  Deal with your emotional baggage from your youth, take these supplements.  Your pancreas and sugar levels have nothing to do with it.'

Prostitution turned out to be a social disorder, maybe even an active decision - no matter how sad.  The genetic "cause" was thrown away a long time ago.  Trigeminal neuralgia has been known to be neurologically based for decades and first identified in 1773.**  CRSP has been accepted as a physical disorder since the 1700's.*** 

Those who suffer from Lupus, M.S., rheumatoid arthritis, CRPS, trigeminal and other neuralgias, other chronic pain disorders or diseases that have chronic pain as a main or major component deserve the same legitimacy.

*Cornwell, Patricia, PORTRAIT OF A KILLER, Berkley True Crime, NY. 2002.

Sunday, November 18, 2012


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.

Tuesday, November 13, 2012


Recently the Minister talked in her sermon about the family, the community that we had in the church.

I told her that has not been my experience.  She replied "You told me that already."

I went on to say "Especially with the holidays and my having no one, it feels even moreso."

There was more to the conversation but her remark, "you told me that already." started me thinking.  It was dismissive, of me, of my feelings.  (I don't think she realized it; this is not a 'smite down the minister post.').

Maybe aloneness, and lonliness, are not be all that distinct from chronic pain; both are invisible, subjective, and foreign to the experiences of most people.

You say "I am in (physical) pain."  You will be believed, at least at first.

You say "I am alone."  You may not have family, because they are far away, or deceased.  Maybe it is a new city, you have not had the chance to make friends.

Three months later you say "I am still in pain."  The looks become one of suspicion.  "Really?  It has been three months already."  Six months and the questions, and disbelief, start.  Years, even decades later, the disbelief often remains, friends and family gone by the wayside, we preferring not to remain with people who doubt the shaky waters on which we now live, they maybe deciding to abandon us first.

You say you are alone, only now it is months, years, maybe decades.  The questions come, the above notwithstanding.  "What did you do to make your family turn on you?"  Despite my explanations, no rhyme or reason, a friend still said "Well, you had to have done something."  No.  It is freudian, but it is always easier to believe that people don't behave that way, without some reason.

"Why don't you have friends?"  I know some of the reasons.  I moved to a new state right before the pain started.  I became virtually housebound, only able to go out for doctor's appointments, groceries, the bank.  You cannot make friends if you rarely can leave your apartment or are in such horrific pain that it consumes you.

The first surgery worked.  Completely.  I got a job as soon as I was able and immediately made 2 friends.  We had a lot in common and just plain liked each other. Three months later the pain came back.  I was completely disabled by it again.  The friendship evaporated, not having been alive long enough to sustain what the pain did to me and my ability to be 'a part of'.

Other friendships,  most often one at a time, started primarily from proximity, and often equal instance of need rather then commonalities and like.  They grew into like but over time the end of need became overshadowed by the awareness that need was what had kept us together and was no longer there, (irony at its best).

My last major friendship is still alive but she now lives 5  hours away.  Phone is good but seeing, feeling, and being with is so vital to life, and so lacking in mine.

I have mentioned my nephew who bucked the family and on his own sought me out.  He lives many states away.  I am so very grateful to have him in my life but the lack, again, of someone to touch, see, feel is very hard to bear.

A reader of the blog asked how I cope with the heartbreak and marginalization of and by family.

My coping mechanism is not a healthy one.  I try to deny it until something like the holidays come and then it hits me, hard, in my heart and in my soul.

Some people find they have lost family because their siblings and others do not want to deal with the constancy of the pain, and disability.  Having pain makes them different, hard to fathom, accept, or believe.

In my case the pain has (had) nothing to do with it.  I do not understand how siblings with whom one grew up, no matter what the relationship, can turn their backs on a disabled family member, can look the other way as they embark on brain surgery 1,2, and on through number 12.  How they still see it as a fake and laziness.  It is hard not to try and look for an answer, the answer, but sometimes that is the healthiest response.  To accept that sometimes there is no answer.

The sad fact is that even when the relationships were good there is something about pain that can turn you into a pariah rather then the beloved sister,brother, aunt, mother, etc, you once were.

I wish I had the answers as to why, and how to overcome, the splitting off, of being cast aside..

I think being unable to partake in life, for me not being able to work, be where I can make my own family, is not an answer but at least an explanation.  If the family into which we were born deserts us, if our friends walk away, we have to find new ways to replace them.  Hopefully church, a workplace, a community center, school, or other places where folks congregate can lead us to the people who will embrace us and who we are, foibles, pain and all.  And we can be there to embrace them as well.

Wednesday, November 7, 2012


"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:


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.


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.
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. "
(( )

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." 
( )

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:!submitComment;D=FDA-2012-P-0818-0001

Sunday, October 21, 2012


I was at choir rehearsal on Thursday night.

I have written before how hard it is for me to get through it, having to use my eye and therefore triggering the severe pain.

I was wearing my sunglasses.  Since the failure of the stimulator a few months back, I have found it harder to tolerate brightness, especially the bright light in that room.  It is more difficult too because of the amount of times I need to move my eyes, especially having to look up towards the light when I want to look at the choir director.

I cannot read the music without regular glasses.  I have taken to wearing them over the sunglasses when we are singing.

I know the pain gets worse because of the reading of the music.  Often we are asked to look at page (so and so) measure (such and such).  That means turning the pages , looking up and down the page - another equation of pain.

None of this is new.

For some reason it was bothering me more this week: why am I having such a problem here?  I wear sunglasses sometimes indoors and always outside.  The weight of them can be bothersome but not usually pain inducing.  The added weight, even the fraction of an ounce, really a fraction of a fraction, makes the pressure against my skin worse.  This triggers more of the pain.

The paralysis has made my skin on the left side of my face tight.  Singing forces me to open and close my mouth a lot, forcing movement of the skin, making more pain.

Almost every rehearsal and every Sunday when we sing, I think I can't keep doing this.  It is too much.  I can't take the the pain.   But I keep coming back. 

It is all I have.  It is also something I love to do; to sing, and to have a place where I need to be, at least 2 times a week.  (I have joined a chorus too but it is only a handful of us, the music is easy, the rehearsal time shorter, and the pain is much less a concern or triggered.)  Last week I asked myself,  does it have to be this way?

I always think that but this time the thought was different.

I took it further.  What am I doing that I do not need to do?  How can I fix this so it is not always a pushme/pullme?

I need to wear the glasses.  That cannot be changed.

I need to look at the music, to go through the 5 or 6 different songs to find the one we are working on.  I cannot change that.

I had stopped, a long time ago, searching for the part the director wants us to notice.  I have a pretty good ear and can often hear the issues he is pointing out.

A few months ago I told our director that I may have to drop out of singing some of the songs in rehearsal.  I assured him I was still learning them through hearing.  I thought that would help, which it has, but not as much as I had hoped.

What else am I doing wrong?  I am using my face.  As a soprano it helps me to open my mouth wider for the higher notes.  This week I recognized that the glasses plus the movement of my face was a major component of the increase of the pain.

I have decided that I will keep my mouth more closed, I will not worry about my pronunciation.  Singing the words is important but I am learning them.  I will sing them more pronounced when we perform the song for the congregation.

Everything I do each rehearsal seems necessary.  I have to wear the glasses.  I have to look up and down and over and around.  I have to manipulate my mouth to make good word sounds and so on.

You know what?  No.  I do not.  I can stop doing one or two things.  They will not change my experience of learning and singing but they may help me.  How much remains to be seen.

I have learned that often we do things by rote, not realizing what it is specifically that is causing us pain.

Next time you are doing whatever it is that is a pain promoting action, think about it, what do you have to do to do what it is you are doing?  Can you do it differently?  Sit instead of stand?  Put your computer or something else that you need in a different place?  Have the meeting come to you instead of you go to it?

People sometimes say to me "You have a big mouth".  Making it smaller is one way I can change the pain, maybe.  It is well worth the try.

Is there something, or some things, you can do that seem small but may turn out to be enormously to your benefit?

Wednesday, October 17, 2012

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.

Tuesday, October 9, 2012


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.

Monday, October 1, 2012


I was in the shower this morning, washing my face.  Suddenly, a bubble appeared; round, pretty glints of green and blue emanating from it.  It was so unexpected, so much fun, I laughed outloud.  The feeling of joy stayed with me for a few minutes.  I keep the memory of that bubble with me.  I bring it out when I start to feel low.

It is these joy filled moments that help us through the not so much fun day, hours, minutes.  You do not have to be in pain to know the importance of having a 'security blanket",  something that helps recapture that fleeting moment; a memento, a sensation, even a smell or taste.

When we were little, most of us had a blankie, or something else that we kept with us to hold onto in those moments when a stranger approached or we entered an unknown place or situation, when we felt unsettled or arfraid, when we just needed the feeling of a known comfort.

Why not have a blankie now?

It may sound silly but it is easy to do and no one else need know you even have it.

Think about it - what is your secret 'this is what makes me feel good' thing': a blanket, the feel of silk or a down comforter?  Maybe it is a stuffed animal or a toy.  Is it the smell of coffee, a certain spice,  the scent of an orange or even a baby?    

You can make a list and keep that with you, the words, the feel of the paper, evoking the memory.  I remember a certain song or show I have seen.  On occasion that is enough to make me feel better.  Sometimes more is necessary. 

It is not hard to do it.

Find yourself a small piece of the material, cut up an old shirt or a tiny snippet of a blanket. If that is not comfortable for you or doable find a store that sells fabrics.  You can buy just a a foot, if they are nice they might let you buy just a few inches (if they're really nice maybe they will even give it to you.).   Many dollar stores, thrift shops, toy stores sell tiny stuffed animals, small enough to fit in a back pocket or a purse.  Take a small plastic bag and fill it with a teaspoon of coffee, chocolate, cinnamon, whatever you like. You can put in baby powder or orange zest.  You  get the idea.  Anything that you can feel, or open and get a whiff,  smelling it directly or discreetly putting it on your finger and smelling the tip.

I am sure some of your lists are a lot longer or different.  Whatever it is for you, the feel, the smell, the sometimes just knowing it is there, is enough to give you the feeling of comfort.

It is funny.  Many of us suggest to others or have had suggested to us that we keep a journal, write a diary, keep a list of the pain trigger; when it happens, when is it worse, when is it better.and so on.

Often forgotten is the need to write or have a list of what makes us feel good, when it happens, what triggered it, how can we replicate it.

Maybe this has given you some ideas for your own "this makes me feel good" moments.   Please add  your own.  And pass it on.

Tuesday, September 25, 2012


I just got an invitation in the mail to a college reunion.  I was not much interested because it was such a big college (Temple Univ.) and the chances of seeing people I knew would be small.
The plus side was an invitation to meet with former chorus members and conductors.

There were only 600 people at the Ambler campus when I was there (1970 - 1975).  My junior year they started a small chorus, conducted by a then newly minted chorus director.  I would love to see him.  I really liked him, but his name immediately evoked a memory that was not a happy one; that should have been a lifelong lesson but which I often forget: that the world is not necessarily my family.
I was young the first time my family taught me this lesson.

I had just come back from the doctor's office.   I was 13, and diagnosed with mononucleosis.   I was told I was to go to bed and stay there for 2 weeks.  I did not feel horrible and going to bed was not what I wanted to do.  My sister June (pseudonym) started yelling at me as though it was my fault I was sick. "Go to your room.  This is going to be so much more work for everyone." 

I stayed in my room, 2 weeks turning into 3.  None of my siblings came to my room to see me or how I was doing.   To make matters worse no one from school was calling or visiting.  (I later found out word had spread I was a "bad" girl because I had the "kissing disease.")

I developed Hepatitis and the 3 weeks turnind ultimately into 3 months of being housebound.  To compensate I took a big sheet and spread it out in the middle of the living room, thinking of it as my own little island.   When anyone came home they had to walk right by and around me.  I figured it was a way to get someone to pay attention to me.   It required effort to ignore me but ignore me they did.

June's behavior was consistent for all of my family.  I was treated as though I had done something wrong.  When finally some kids from school did come to the house,on halloween night, instead of feeling excited and happy I hid, embarrassed that I was sick, embarrassed that they would see me as sick: the lesson my family pounded into me learned terribly well..

When I was 19 I developed a spontaneous clot in my left knee.  There is a lot more to the story but for this post this is all that is germane.   I had to use crutches and I was mortified by the visible proof of my disability.

Jeff, the college choir director, had assigned me a solo for our upcoming performance.  I did not want to do it -  I had stage fright - but I was honestly happy that he forced my hand by insisting I was the only one who could do it.

I was all set and then, instead, I was on crutches.  How could I stand before an audience and have them see I was 'ill", that there was something wrong with me, with my body?

I refused to sing despite Jeff's assurances and reassurances that no one would care about anything but my singing.

I sat in the audience that night, listening to my replacement.   I was mentally kicking myself, why aren't I up there?  How could I let this opportunity pass?  No one would have cared about the crutches.  The last sentence immediately brought the pictures and words of my family to mind - oh yes they would, there is nothing wrong with you, you are just trying to bring attention to  yourself.

I wrote my last post about the words of hurt that we often carry with us, pouncing on them when things are bad, using them to make ourselves feel even worse, being unable to let them go when we most need to.

It is so hard to let that go.  It is even harder to let go of the lessons that we are taught as a result of the words.  You are lazy, you are bad, you are an embarrassment, your situation is an humiliation and so on.  So therefore you should not be seen, you should hide, you should mask your reality.

The invitation to the reunion reminded me.  I have to repeatedly work to not let those people who worked so hard to hurt me, on a conscious or unconscious level,  continue to work their havoc on me.

Pain may be invisible but that does not mean I have to feel I need to keep it that way.  It is actually okay to say "I have pain." or  "I need thus and so to help me.", or even "I can't right now".  (Much, much easier said then done, I know, for many of us.)

Sunday, September 16, 2012


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.

Monday, September 10, 2012


I never thought a political debate online would lead to a post but I had a revelation the other day when someone who disagreed with me, after name-calling and using profanity told me, "I see you on facebook so obviously you are not disabled.  You should be working."


This person, whom I knew slightly in high school, knew me now only through my facebook postings.  He may have read some of my blog posts but has no day to day knowledge of me; and most probably about the history of my pain and where I am now with it.

"I see you on facebook all the time." (all the time? Funny, since I am not on it 'all the time')   It took me back to the words of my father, whose insisted on his disbelief in the pain no matter the proof from the doctors.  "I have seen you read so I know you can." 

Yes I still read.   I have to take narcotics to do it.  15 - 20 minutes, if I read or use my eyes consistently, causes such horrific pain that I become nauseated and have to stop using my eyes, sometimes for up to 1 -2 hours.  To not use my eyes means doing nothing: even eating, cooking, little things, requires eye movement so I am down for the count if I push it (which I too often do).

It reminds me of others who write, in support groups, or to me personally, or on their own blogs, my (        ) does not believe I really have pain, or that it is 'really' that bad.  When they write this it is often accompanied then and there, or in other comments at some point, by information that the person who said it does not like them, or is angry with them, or is someone with whom they have a bad relationship.

If you read me a lot you know that I tend to go to cancer as my analogy:rarely, if ever, do people say, in a fit of pique or anger, or disdain, "You do not have cancer, I know you are healthy."
Would he have written that to me, "I am against your political position, what you say is (&%$%  and you are not disabled (sick with cancer). You should be working."  No.  I truly doube it would even have occurred to him.

Maybe, these words,  "You are not really in pain" needs to be seen as a cry for help from the person who is using them, as a sign of their need to cut to the quick.  They want to hurt the other person and going after the invisible illness, the disorder that often just relies on the statement "I am in pain" is the 'best' insult they can find.

It does hurt, it is bad enough to be in pain without having to deal with not only the disbelivers but those who want to use it to add hurt, but we also need to keep it in context, of remembering who said the words and what their intent was.  It is hard to  not feel the cut of the words: but the best thing we can do, when it happens, is look at it for the trash that it is, mentally squish it into a ball and throw it out into the universe, letting it become the nothing that it should always have been.

Monday, September 3, 2012


I had neck pain for years, I complained about it everytime I saw my neurosurgeon.  I was there for post surgery appointments following various trigeminal neuralgia surgeries.  Each time it was acknowledged and then ignored.

One afternoon I was in an elevator with two friends I saw every few years..  Both were taller then I, and for some reason, looking even taller then usual.  “You guys look like you've gotten taller.” I said Ed laughed.  “You look like you've gotten shorter.”   I took that to heart.   I did not immediately connect it to my neck pain but, at my next appointment with the neurosurgeon, I impressed upon him how bad the neck pain was.

He took out the old x-rays and put them on the light box.    “Dr. (     ) has been concerned about this for years.”    That was a surprise to me because no one had ever mentioned it.

Then he said “I want you to go right now to the orthopedic surgeon a few blocks away.  I am calling him now."   I saw him about an hour later.   Suddenly I was being told "You have to have surgery this week.   Your neck is 'falling down'.  You could be paralyzed just walking down the street."  It turned out someone, I assume a resident, had taken out too much bone, 8 years before, when he was trying to access my brain through an incision in my neck.

I had the operation, which also carried a risk of paralysis.  It really had 'fallen down'.  12 screws held clamps in the front and back of my neck to hold it up.  It added back the 2 1/4 inches I had lost as my neck, the cervical vertebrae 2 - 5, slid down, my head getting closer and closer to my shoulders. 

My friends had been right, I had been getting shorter. When I said to them “It’s a good thing you said that about my looking shorter or I never would have had the surgery or known.” she replied “We were just kidding”

I knew the neck pain was bad, it had become exhausting just holding up my head.  Nevertheless I did not insist from the start, "Something is wrong here."  I was being stubborn, ignoring the pain and instead relying on the doctor's nonchalance.

How many times do we have the pain from our pain disorder, but it feels worse, or different?  How often have we felt discomfort, or worse, elsewhere in our bodies, but decided it is nothing or 'I don't want to know'?

Stubbornness can truly disable/kill us.  The strange thing is that many of us, while stubborn about other areas of our lives, other things we need: I am going to keep working on (      ) until I get this done, I will continue to fight for myself (or family or friends or others) as long as it takes to get the result I feel I deserve, or want, are often not stubborn when it comes to our bodies.

It was a hard lesson for me, and for many of us, I would surmise.

Fighting for medical care, making medical complaints can be no different.  No matter how loud and long it may need to be said we must say it, even if it needs to be yelled.  "I HAVE THIS  (pain, strange looking thing, funny feeling) AND I NEED YOU TO HEAR ME! 

And it is amazing how liberating it is to stand your ground until you get what you know you need, even if it is 'only' to be heard.

Sunday, August 26, 2012


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.

Sunday, August 19, 2012


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.


Sunday, August 12, 2012

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.

Monday, August 6, 2012


We often do not think of the effect of our words. especially when they are written or said to someone who is peripheral to our lives.

One day, when I was about 24, I was in my living room thinking about making acting and singing  my career, of making the gigantic step of moving to NYC.   Looking around the room I happened to notice my high school yearbook sitting in the bookcase.

I took it out and started reading the little things people had written to, and about me, in their remember me messages.

I was particularly taken by the words written by Susie (pseudonym).  We knew each other slightly, mostly from choir where I was known as the person most afraid of our choir director.

She wrote about my fear, how she thought my body would not be able to take the shaking each time we had a "purge".   (Mr, (        )  made each of us, in turn, sing our voice part of one of the pieces of music.  Afraid of him, petrified I would make a mistake, I sounded more like a lamb to slaughter, my shaking voice almost baaing.)  "Remember the purges?  I'll never forget the one where you really sang unbelievably."   (That day, for some reason, I overcame the fear.  I sang with no terror.  The other choir members actually applauded when I was done.)

"I hope", she wrote "that kind of thing continues forever because if you show everyone what you showed him you'll make it anywhere."

Her words reverberated and stayed in my mind and brain.  "You can do it" they reminded me, a version of the little engine that could.

I saw Susie a few years later, by happenstance.

 I reminded her who I was and we shared some small talk.  I told her she had a very big effect on my life because of the words she had written.  She looked at me with a kind of strange expression, a "are you a little off?" moue of her lips, the lifting of a brow.

"This is somewhat what you wrote." I said summarizing it for her.  "You wrote about showing everyone what I showed Mr (    ) that day of the purge.   No one ever said that to me before,  no one ever gave me the kind of encouragement, that the possibilities are there.  I really want to thank you for that."

Her expression indicated she thought it was a strange thing for me to say, or maybe just that I was strange.  We said our good byes.  I have never seen her again.

It was, for her, a little thing.  Maybe she grew up in a house where an "atta girl" and pat on the back was common.  That was not the case for me.  My impression was my remembering it, much less taking it to heart, was way beyond what she intended.  She wrote what she thought at the time and never gave it another thought.  I read what she wrote at the time, and gave it a lot of thought.

Words can hurt.  Words can heal.  They can encourage, or discourage.  They can linger in the air, between people, reminders of their hurtfulness.  They can settle in your heart and sing to you.

The little things, the thoughtful, and thoughtless, really do mean a lot.  

I think of Susie's words now and again.  They remind me that what I say may take only a few seconds but what you hear may last forever.

Sunday, July 29, 2012


Someone wrote a comment in a support group about having to go to the ER because her pain was out of control.  She was begging for morphine.  At the same time she was telling them how much she hated the drug, taking it, and how it made her feel.
This, to me, is part of the bizarreness that is chronic intractable pain and it's treatment. We hate what helps us but we need it, a catch 22 that makes some docs question how bad our pain is. 

Does this person really hate taking the opiates? If so, why is she asking, not just asking, begging, for it?  If her pain is so bad why does she continue telling us how much she hates the drug?  Is this an addict trying to convince me she has pain, trying to scam me, or is she truly a person in intractable pain who needs my help, in the form of the narcotic, even if it is something abhorrent to her?

It is the same struggle some of us find when we go to the doc.

I feel awful, the pain very bad, my need for his help great.  I want to look good, for him to see me as someone who speaks well and looks good, who can adequately explain my situation and understand his instructions.

I feel awful, the pain very bad, my need for his help great.  I want to look good but my body is not doing what I want.   My hair is brushed but still unruly, my clothes somewhat wrinkled: it is too hard to use the iron.  I can still explain myself, my pain, my symptoms, my problems.  I can still understand his instructions.

In both instances there is a minefield:  she looks good, how bad could her pain really be?  She looks bad, she must be depressed.

The drug conundrum:  she hates the drugs but she wants them.  Is she an addict or someone honestly in severe debilitating pain?

I write about this now and again - the issue of "proof".  How do you prove an invisible?

Bringing a diary or journal with you where the doctor can see what your daily struggle looks like may help.  It is no longer just words without context but a calender, the days noted by how bad your pain was that day, what you could not (or could) do that day.

If you have someone who can come to the appointment with you, we should not need a 'witness' to our struggle but another voice cannot hurt, makes the result(s) of the pain more visible, because it is  seen by another.

Ironically the facial paralysis from the medical malpractice is a benefit to me, I have a 'visible' sign, they see the damage, the assumption is made, something is wrong in her face.  The lids of the bad eye are often swollen.  They ask not "Do you have pain?" but "How bad is your pain?"

I hate how I look.   I  made the video for the Jennifer Grey CNN interview.  I first did it without my sunglasses.  I had no idea how I looked to others.  I honestly thought my face looked close to normal.  I was sickened by what I saw.  Even wearing sunglasses the paralysis was obvious.   The still photo was not much better. 

But the paralysis is like the morphine, I hate the paralysis, the person who was begging for the morphine hates it, but, in both cases, it is something that benefits us.

It is not love/hate - there is no 'love' involved, but the dichotomy that we face is just one more aspect, and problem, of life with chronic pain.

Monday, July 23, 2012


I read that line in a book. I always think of fear as something negative, even when it keeps you from doing something that may cause you harm.
Hope is always a positive word, a concept of good things that may happen, that are devoutly to be wished.

Many times I have said  "Don't let your pain make the decisions for you." especially when you are considering treatments, options, and surgery in particular.

Maybe hope too should be silenced when you need to make the big decisions: I hope therefore it will (help, work, fix me).

How do we stay grounded?  The pain is often so bad it is hard not to let it become the voice of reason; when by its presence reason is often absent.

My implant remains in me even though it failed a few months ago.  I have written about it before.
Last week I called the company, for the second time,  that makes it,  after having seen my neurosurgeon once, talked with the neurosurg. who had placed it and lives a number of states away, and 2 representatives from the company that are trained to check the unit for problems.  Everyone said "I'm sorry, there is nothing else to do."  However...

The woman I last spoke with gave me different information then everyone else.  Some of it made sense: maybe something is wrong with the battery that powers the unit.  It is possible something is not registering when it is checked."  I thought it was a good idea.  I also thought it was a good idea when I first suggested it to the surgeon who said "No.  It is fine."

She also gave me slightly different information about the wire connecting leads and how they could be changed without removing the unit.  That was not the explanation I had previously gotten.

So hope comes in the door again.  Fear resides here too.

The fear of removing the unit when it may be fixable is based on hope, hope that it can still be fixed.

Is there a point where the two need to be blocked?  Can they exist alone or is it always the pair when decisions need to be made?

I do not know.  Sometimes I do think my unfettered hope is a negative thing, but without hope what else is there? 

I put the question  out to  you. 

My reality, our reality of pain, is it inconsistent with hope, must it always be paired with fear?

Wednesday, July 18, 2012


(I am mortified by my picture, just want to get that out of the way)

Jennifer Grey is the spokesperson for PARTNERS AGAINST PAIN>

CNNIreport has a site for questions for her.

I have put on my picture and question asking her how she will be spreading the word about chronic pain. The more clicks, favorited, shares and recommendations (takes a few seconds just to click on those boxes)the higher up I go on the page and the better the chance the question will get to her.

Here is the click:

Thanks to all of you who click.

Sunday, July 15, 2012


Choir is over for the summer. If I go to church I have to sit with the congregation. My choice of seat is a problem. I want to sit with others but the best place, in terms of the pain, is in the back, on the left side where less people tend to sit.

Sitting there last week, I started to think about my choice of area. After all I complain about being alone and yet my choice of seating invariably ends up with my sitting by myself.

I pick a pew that is not parallel to a window. That keeps the light from coming into my eye which is extremely painful. The windows and way the seats are situated make sitting towards the back the best way to accomplish this. If I sit on the right side of the church there is a much better chance the sun will beam in towards me, even though it comes from across the room. Okay the left side still makes sense.

I sit in the back. Maybe I could sit up closer, even a pew or two.

Sally asked me to come sit with them. "You shouldn't be sitting my yourself." She doesn;t know all the intricasies (well, most don't, I think) that go into little decisions like where to sit and I did not want to go into it (and time did not allow it anyway) so I moved over to sit with her and her family.

It was not as bad as I expected, and also not a bright sunshining into the room kind of day. I also started to notice that I mostly kept my head down and tried not to watch what was going on in the front. Nevertheless I wondered if I had been too fearful of my sitting choice.

No. I was not.

The lights from the ceiling are in the center of the sanctuary, along the line of the pews, left and right side. There are none on the aisle sides. The farther away I sit from the center, the less brightness there is.

It hurts my eye more to turn them to the left then to the right. I am not sure why, maybe something to do with the pulling sensation. The left sided pew makes it easier to look when the minister is on the right side of the podium.

Sitting far back keeps me farther away from the lit candles. The movement of the flame hurts my eye. Not in the back it doesn't.

I do wear my sunglasses in the sanctuary but I do not when I go down to fellowship. It is just as bright, in fact brighter, down there but I have to use my eyes a lot less. I talk to one, maybe 2 people at a time. They are right in front of me, it is not necessary to keep moving my eyes. I do not have to do any reading like I do during the service, wanting to sing the hymns and say the congregational prayer.

There is even more minutiae involved with the choice but you get the point.

How much struggle do you go through to make the decisions that allow you to get through the day, to do the one, two, or many things you accomplish each day?

People with chronic pain deserve gigantic pats on the back that rarely come. Our struggles often look like anything but.

Bill Clinton used to say "I feel your pain."

Maybe we make it too easy for others to not feel it; by denying it or acting like what we are doing requires nothing more then simply doing it.

Tuesday, July 10, 2012


I turned on a morning show just as a doctor and interviewer were ending thier segment on prescription/opiod drug abuse. It was only in the last 2 sentences that the question was asked about chronic pain vs. acute. The doctor responded that opiods were given when someone has a sprained ankle, which was not appropriate. Chronic pain was more like with migraines or chronic lower back pain. Then the segment ended.

I see article after article on TV and the internet. Magazines have opiod abuse as their cover stories.

Sometimes the author will differentiate between acute pain and chronic pain. It seems it is more rare when they have some of us with chronic pain talk about the pain, its effect on our lives, and how we feel about taking narcotics for the pain.

What they tend to miss, and I think I may well be speaking for a majority of us, is that we hate these drugs. We do not like the way they make us feel. I hate the codeine headache I get when I have to take an extra pill, I hate how dry my mouth always is, I abhor the feeling of groggyness, I cannot stand that it does not help much, sometimes it feels not at all, but, but that is all there is.

I can hear people replying "Then don't take it." After all if I am not sure it is helping why would I take something I say I hate?

I will tell you why. I continue to take it because it is the only time I feel like I am exercising some power over the pain, that there is something I can do to help myself.

I would prefer it not be a narcotic. I have been given everything from the smallest dose of codeine to morphine and even tincture of opium. Nothing has had much success. Very rarely I will ask for something stronger but I never stay on it. The side effects, for me, are worse, and the gain, nothing more then what the codeine gives me. And the codeine now and again does seem to help. I am not going to stop taking something that may, at some level, and at one time or another, actually help.

Go to the support groups or chronic pain sites and read the stories of those who have CRPS, MS, RA, other chronic pain diseases. It is heartwrenching to see what the pain does to people. It is even more painful to see what happens when medication is withheld or reduced because their doctors, or the DEA, is afraid they may abuse the drug. Drugs which, for the vast majority of those in chronic pain, do not get abused. We work to be able to think the best we can, do the most we can, over medication only dulls this.

The drugs if they help are necessary. Why would someone sell medication that may be all that allows them to get out of bed in the morning or if they are really lucky allows you to work?

We are the rest of the conversation. Somehow we need to get our voices heard.

Monday, July 2, 2012


One of my old classmates got stung by a hornet. There was a picture and it looked really bad: very red, very swollen, and painful.

He posted a picture at our high school group page, writing "Sure can not compare this to Carol's pain..."

I appreciated the nod, especially since people there had been mad at me because my posts from here automatically post at that site. (In a way it is appropriate, it is my status update after all) One person wrote he felt bad for me but seeing the posts and reading about my pain was getting "old". (I reminded them they could delete it and not read it, reading it was a choice.) It was a kindness to acknowledge my experience.

It reminded me of the other side of having chronic pain, the other side of "I don't believe you".

I know people, and I am sure I am not alone in this, who preface everything they say about how they feel with, "I know this is not as bad as your pain". Granted a cold, or a cut finger does not rise to the level of trigeminal neuralgia or CRPS, etc. but when it happens to you it is the worst pain, at least for the moment when and while it is happening, and for as long as the pain and discomfort lasts.

It is a strange road to travel.

People tend to be with chronic pain like they are with their political party, one side or the other. It is okay to accept the level of pain in which most who have chronic intractable pain live with, we revel in those that understand and believe; who do not argue with the truth of it. And most of us are not breakable china dolls. You can have pain from an injury, the bite of an animal or a bug, or feel miserable from a horrid cold or allergies. You can tell us how truly awful you feel without feeling saying so negates our pain.

We want you to understand us. We also want you to know we understand and feel your pain, no matter what it is from or how long it may last.

And to my schoolmate - feel better real soon.

Monday, June 25, 2012


I have only looked at 2. It was too frustrating to watch more.

The first talked about how pain is only temporary. It was supposed to be inspirational. It was not.

The other was a 5 minute video:

It was the same old regurgitation of: pain is a result of lifestyle, emotional and psychological issues/incidents. Change your lifestyle, change your outlook and viola you will feel better.

The presenter suggested diet, activity levels, lifestyle may contribute to your chronic pain. Okay. I will agree to that, on at least some level.

She continues by stating you can 'retrain" your brain.

This is not a new concept. The explanation by some is that the brain learns to keep the pain. If we could retrain it, break the connection(s), we might be able to reduce or stop the pain but...

That is not what she is talking about. Her 'retraining' is looking at "contributors" to your pain experience, how your thoughts and emotions affect the nervous system. This part is legitimate. I think most of us are aware the pain may be worse when we are stressed or anxious and better when we feel relaxed and happy.

The unfortunate part is she goes where those who want to diminish the real, medical, legitimate truth of chronic painalways go.

She suggests looking deep into yourself to see what was happening at the time the pain started and how that may have influenced the developing of the pain. She feels that there are connections between, say, a trauma (emotional, psychic) that happened and the pain starting/worsening.

This is the same old hogwash: it is a psychological issue. Find the trauma and you find the key to the pain.

I moved to NYC 6 months before the pain started. Shortly after arriving I became depressed, for a variety of reasons: new city, no friends, a job I hated.

I wondered, for years, if the depression caused the pain, at least to start. The only problem with that scenario is that my pain is the result of a birth defect. I did not know I had it; and even if the depression allowed for some form of reduction of my brain's ability to fight the effects of the defect, it was not to 'blame' for the trigeminal neuralgia. Because of the birth defect and dozens, if not more, of extra tiny thin blood vessels throughout the left side of my brain, this was going to happen. If not then, then soon.

My family, to this day, think, even after 12 brain surgeries, this is a farce, I am merely lazy, a malingerer. I enjoy not being able to work.

If this is the reaction to a proven disorder how much harder for those who live with fibromyalgia or CRPS that has no proof for its presence?

When it is surmised that cancer is a result of poor emotional/psychological health the naysayers come out in force. No, it is not! It is the result of cells going crazy. No one says your M.S. or Lupus or diabetes is the result of your thoughts. For the first 2 they may say 'yes you have the disease but your pain cannot really be that bad.' For the latter, I do not think I have ever heard it tied to the person's thoughts.

At what point does our disease, our 'disorder' become on a par with all others? What must we do to have the word 'disbelief' removed from the vocabulary of those who talk (and sometimes treat) chronic pain?

Sunday, June 17, 2012

LOSS OF THE APF (American Pain Foundation) AND WHAT NOW?

I am so unhappy that the American Pain Foundation (APF) closed down.

I understand the issues with the close ties to the pharmaceutical industry. My immediate reaction was so what? They are all we have. I questioned the basis behind the hoopla, especially when I found the article, written by Pro Publica, that seemed to initiate the investigation. The authors bias is apparent in the chosen title of the article: The Champion of Painkillers.(1)

In reading the article there are some things APF has done that do give me pause, a friends of the court brief, for instance, in support of a doctor who was prescribing up to 1600 pain pills in one day. Another friends brief backed Purdue Pharmaceuticals against pain patients who sued saying the company had hidden some of the risks associated with the drug OxyContin. The APF argued that all pain patients would be harmed if the patients won: the result would be all doctors afraid to prescribe opiate medication for pain patients.

I found that reasoning specious at best.

These are legitimate concerns. Maybe the ties were too close. There was also issue taken with the information they provided, some allegedly out of date or more positive towards narcotic meds then some research might suggest.

But where else would the money come from?

Many of those in chronic intractable pain cannot work, or on disability. We cannot afford to keep them afloat.

Many people do not believe there is a beast called chronic pain. They are not going to pony up.

People give to the cause of, say, cancer or muscular dystrophy because they have heard of these diseases most of their lives. They know cancer can happen to them, or has happened to them or someone they know. Jerry Lewis takes over the TV one weekend every September to raise money for the MDA (Muscular Dystrophy Association).

Celebrities come out to talk about their cancer or that of someone they love, During the telethon celebrities sing, or do a comedy act, or talk forcefully about the lives of those affected by MD.

We do not have that. Paula Abdul came on Dr. Oz. She has RSD. People in the pain world were excited. She will bring attention to our cause, they thought. I did not see the segment but all reports on the pain sites spoke of her ignoring RSD completely during the segment.

The trigeminal neuralgia association (now the facial pain associaion) had Kathryn Crosby (wife of Bing Crosby) as their spokesperson. When she went on TV, representing the TNA, she touted her book about life with Bing. Not a word uttered about trigeminal neuralgia.

What are we to do?

Many of the pain disorders have their own groups. The general pain groups that have given themselves names to imply a countrywide involvement, and do good work, work in only one or two states. As a women in pain awareness representative I have been able to get the Pa. state legislature to proclaim September as Women In Pain Awareness month (WIPA) for the last three years - but that is as far as it goes. Calls and emails to the media were always ignored.

It occurred to me a few days ago that the, I believe APF backed, National Pain Awareness Month, occurring every September, completely misses the mark. Everyone knows about pain, they do not know about chronic pain. I did the same when I requested the WIPA month. It did not occur to me to include the word chronic.

Whether the APF was wrong or not, whether the ties were so big and so close that they could not remain independent, I do not know.

I do know without them our loudest voice has been lost.

We need to find a way to come together and scream until we are heard once again.


Sunday, June 10, 2012

Another Aha! moment

Last week the minister said something interesting to me.

After service we stand in line to meet with her and share a greeting. People often stop and tell her about things that are going in on their lives.

She knew that my stimulator had stopped working. Two weeks ago I mentioned that I had an appointment with my neurosurgeon for the following week. She wished me well and I went on my way.

Last week I told her that the surgeon told me that there was nothing more to be done and "It was the end of the line." She responded "Now you will have a life of adventure." I was perplexed. "No." I said. "Now I will have a life of pain."

I thought about what she said. It was far different from the conversations I hear between her and other parishioners, as they talk about their cancers or other illnesses, that have 'real names' like M.S., kidney stones, etc.

If I tell you I have cancer and the doctor has said, "Sorry, this is the end of the line." it has a very definite meaning. The responses, "I'm so sorry." "Is there anything I can do for you?" is the normative. For pain, there is no pro forma reply.

I should no longer be surprised when my pain is apparently confusing to someone or to their decisions in how to react.

It is frustrating, a different form of, not exactly I do not believe in your pain, but of - this is so out of my realm of experience that I have no good response when you tell me you are in pain, or that the doctor says there is nothing more to be done.

It is another Aha! moment. A 'chronic pain is too far apart form what most people know' moment. It is too much to hope for, to expect, the same sense of empathy and understanding that is available for someone with a 'common' illness.

It is another reminder of the need for us to get the word out about chronic pain, to make it a term as common as cancer or many other diseases.

In a future post I intend to write about the demise of the American Pain Foundation . The closing of its doors means that all of us with and in chronic pain have to work that much harder at getting our voices heard. Having a common response to our pain; as a common disorder, having the world know about chronic intractable pain, developing an empathy and compression, is a result devoutly to be wished.

Sunday, June 3, 2012


The neurosurgical appointment was a little strange. It went from 'We can do this" to "Is it the end of the line?" "Yes."

We talked about taking out the implant and replacing it. I have concerns about that, could there be a risk of brain damage and would insurance cover it?

The implant was 100% experimental. I am not sure how it was paid for or whose, or if, fees were waived. He explained to me it would be considered a 'revision' so there should be no problem getting it paid for. The risk of damage would be negligible.

We talked about if it might be worth redoing the decompression procedures that had been tried by both Dr. Wilson and Dr. Osterholm (not MVD by Jannetta because of the damage from that procedure.) My concern was that being in the same area where all three of them had been could reinjure the facial nerve and I would have the 100% facial paralysis again.

He told me that another neurosurgeon would have to do it, that it is not something he does anymore, and that I would have to have an MRI before anyone would even consider it but I am not able to have an MRI because of the implant which means the implant has to come out.

The longer we talked the more complicated, and ultimately not complicated at all, it became.

He told me he actually could, and would, do a decompression procedure for me if he thought it should be done but he agreed there was too much of a chance of problems because of all the people who had been there already.

Replacing the implant, which seemed a possibility, not one I was sure about - to be sure- probably had a good chance of not helping again. I had already had that experience with the dorsal column stimulator when I lost that to an infection. It had worked 85%. Re-placing it in the exact spot gave me no benefit at all. The current implant could be replaced in the exact spot but that gave no guarantee the benefit would be the same, or happen at all. The suggestion of removing this one, that failed, and putting in a new one was now off the table.

The suggestion by another neurosurgeon, of trying a newer kind of stimulation, peripheral, was a thought. But this neurosurgeon does not do them and could only refer me out to someone in another state.

I questioned if this one, where the wires are placed directly under the skin in the pained area, would be possible since the pain is from anaesthesia dolorosa (a.d.) and the touch is unpleasant in that exact area. That was not the real problem. The problem is that, of course, it would not effect the eye movement and usage pain; but it would also have to be placed around where the a.d. pain is, in the lids, so that it would most probably not get the correct area anyway. Besides no insurance, so far, has been willing to cover it because it is also considered experimental.

He reiterated what everyone has told me, no one knows why you have your eye pain, and there is not much that can be done for phantom pain (a.d.).

Of course something was done, or the implant would not have helped to the degree it did.

"So there is nothing else to be done?" "I'm afraid not." he replied.

That is not an acceptable answer, so I intend to deny it. I will continue to look for some answer. Is that the way to handle it? I am not so sure. On the one hand 30 years + is long enough to finally come to temrs with my reality but it also seems like almost everytime I did, a new idea came along that did help, even if only a little.

Is refusing to give up on the expectation of an answer incompatible with accepting a current reality? It is not. It is a lot easier for me to write and say that the two are not mutually exclusive? It is. Does the fear that the reality invokes make it harder to give up hope? Yes.

At some point I am going to have to stop writing in the occupation box on forms, 'disabled, at present'. At some point, I will have to admit this is real and permanent. I am not ready to do that yet. Is that harmful, to live in the land of denial? That is a question I am not yet ready willing to answer.