DEA and us. I started a petition...

I have posted this link elsewhere so some of you already know about it/have signed/passed it along but by putting it here I am able to spread the word a little more.

https://petitions.whitehouse.gov/petition/protect-those-chronic-intractable-pain-dea-and-its-war-drugs/rqbB2zMq?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

we petition the obama administration to:

protect those in chronic intractable pain from the DEA and its "war on drugs."

Those of us living with chronic intractable pain are finding it harder and harder to get the prescriptions for the medications that for many of us are all that is left for helping live with constant/intractable pain.
The DEA has taken its 'war" to our doctors offices and our treatments. Many physicians, afraid of the DEA, have stopped or reduced writing for opiods, which in turn has made it even more difficult for us to have the meds we need to get through the day, for some, just to be able to get out of bed in the morning.
For many it has made the difference from being able to work to going onto disability, costing more to the gov't and therefore the taxpayers.
We are petitioning to ask that our doctors decide what we need, how much and how often, and not the DEA."

Some people have told me this is not enough, we need to get the word out about chronic pain or the DEA is only part of the problem etc.
This is just one aspect of what we have to deal with.  If we can get attention to this part of our world as chronic pain patients it is at least a step in the right direction so I hope you will sign and pass  it on.

WHAT'D THEYSAY? OOPS.

Many years ago my sister gave me a Christmas gift.

I opened the box, and saw the ugliest shirt I think I had ever seen.  It was a hideous shade of green with some sort of ugly orange amd yellow design.  There was also a ruffle somewhere if I recall.

I was staying at my mother's house.  As soon as we got inside my mother broke into tears.  "How could she be so nasty?  That shirt is so ugly, there is no way she didn't mean it to be mean."  I felt the same way.  I did not cry but I was angry.  Just don't give me anything then but why be mean about it.?

I put the shirt on, just for the heck of it.  I looked in the mirror.  "I'll be darned.  It's not that ugly once it is on."

It became my favorite shirt.  I almost always got compliments when I wore it.  And I wore it until it wore out.

I went to a doctor's office a few weeks ago.  The nurse wanted to weigh me.  I got on the scale, putting one hand on the wall and the other on the scale to balance myself.

"You have to take your hands off so I can get your weight." she said in a way that made me bristle.

"I have a balance problem so it will take me a minute or two before I can let go." I said in a snarky voice.

"I'm sorry.  I have never seen you before and did not know."

I jumped to the conclusion that she was being aggressive,  the 'you have to' a provocation.

As I waited for the doctor the incident with the nurse made me think about the shirt.  She forced  me to defend myself, to defend something that embarrasses me, something I hate.

The shirt may have had other meaning for my sister.  The enmity was there.  The reality of the shirt, the piece of fabric in front of me, able to be seen in a new way once it took a different form, was a lesson, the opposite of the cliche 'you only get one chance to make a first impression.'  Yes, there is only the one chance but it is important to give some things a second, third, even forth, chance sometimes.

I have written about how I feel about the pain, the disabilities and problems that have ensued.  My family taught me - keep your mouth shut, do not complain, if you do we will not believe you.    I am a malingerer, hypochondriac, etc, words, definitions, that are the opposite of my reality but words that took hold, words that continue to be my M.O.

"You need to..."   I heard it one way but it took a different form once she explained why she had said it.

Too often we hear the first words, "You have to, why don't you, why can't you, couldn't you just...." and take them as fighting words.  We do not listen to the next sentence.  We may not question the person, ask them to explain.  We may not take the sentences out of the box and see if the form is different, or can be made different.

As hard as it is to do we need to take a step back, breathe in and listen to the words.  Hear the way the person reacts to your response. 

Maybe, just maybe, what we heard was not really what they said, was not what they meant. 

Sometimes talk can be clumsy, words tumble without balance, we catch them in the wrong way. As they topple we juggle to make them fit what we think the form is, when between the two of us we can work to make them upright, and uplift both of us in the process.   

WHEN DESIRE AND FEAR MEET HEAD-ON.

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)?

PROSTITUTION AND CHRONIC PAIN. WHAT'S THE CONNECTION?

"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.
** http://emedicine.medscape.com/article/1145144-overview
***http://www.rsdrx.com/history_of_rsd.htm

TO ANALYZE THE BEGINNING IS POINTLESS.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ARE ALONENESS AND CHRONIC PAIN ALIKE?

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.

A GROUP OF DOCTORS WANT TO DECIDE FOR ALL PAIN PATIENTS

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

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

The first is addiction, from a novel. 

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

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

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

"SPECIFIC ACTIONS REQUESTED FOR CHANGES TO OPIOID ANALGESIC LABELS:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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