My book.

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

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Friday, April 29, 2011

How honest is too honest?

I was excited about doing the blog. On days like today though, I am unsure about it. How much do you disclose? I read some blogs where people go naked in their despair, happiness, dropping chocolate on the floor 20 minutes ago and eating it despite the 30 second rule.

The Pained Life, for me, is not just 30 years and counting. It is 50 plus years and counting.

Do I write about the pain caused by my family? Do I tell you folks whom I do not know but know are here the things that have been done to me? Do I feign optimism on days when truth and pessimism are the words of the day?

It is a beautiful day. I want to go out and do something with someone but there is no one to do it with, and really how much do I want to stress the eye anyway?

For me, as much as Spring is my favorite season; so beautiful, all the flowers, colors, sights - bunnies and folks coming out of hibernation, and smells, absent the allergies how can you not glory in it?, it and summer are the worst for me.

I cannot drive at night. It used to be because my left eye would erupt in pain the minute a headlight came towards me. The pain would cause me to close both eyes and involuntarily take my hands off the steering wheel. No one was safe. Now I have a tiny cataract in the right eye. Everything has a glare at night: headlights, street lights, bike shoes lights. No one is safe.

Fall and winter have shorter days. The shorter the day, the less sunlight; and the less sunlight the sooner the dusk and dark when I have no choice but to stay home.

The sun streams into my bedroom window. It wakes me early. It is beautiful. And frustrating. How many hours do I have to fill before it is too late for me to go out?

The frustration of the day leads me to thoughts, places, where I prefer not to go. Why did the people who are supposed to be my family desert me, so many, many years ago, at a time when my life looked it was going where I wanted it to go? Lies have been told to people who used to like me. Tales based on untruths passed down to the next generation.

A few of us from the church sang at a member's funeral yesterday. I listened as the woman's granddaughter talked about her wonderful memories of her Grandmom. I teared up as I heard the choking in her voice. I thought selfishly about my aloneness.

When I fell, there was only one person I could think to call and ask for a ride home, but I knew he would be at work. The cab company did not answer their phone. Biting back the embarrassment I felt at having no one I called the church. Immediately I heard a very warm and upset voice, "Absolutely we will get someone there for you." Within 10 minutes or so, Jean (pseudonym) was there. We barely knew each other but she was so sweet to me, and very happy she could help me. I was inordinately greatful; but once home there was no one to call me, no one to ask; is there anything I can do, anything you need? The ultimate thought while the granddaughter spoke at the funeral: When I die who, if anyone, would speak for me?

I look at my life. It ended the day the trigeminal neuralgia started. Is that an overdramatization? In one way no. In another yes.

It ended in that I could not have the experiences that would have helped correct the bad lessons I learned early on in life. It stopped my dreams of being on a stage, of singing professionally, of having a life like any other.

It did not end because I am so very lucky. I can walk, and talk, and think and feel. I have a roof over my head, money to pay my bills, people/friends I 'talk' to online, a nephew for my family, and though no one right here, in front of me, 'real life'friends (people I used to feel and touch and play with, go for a coffee, etc.) with whom I have a continuing online or phone relationship.

I always like to end things on an uplifting note. Forcing myself to do so with this post has also forced me to look at the up side.

So now that I have made the frown turn upside down, I think it is time to end the post.

And the thought occurs, have I shared too much, even while giving hints and teases but ultimately not being very forthright at all?

Do I say The heck with it and hit the publish button?

Wednesday, April 27, 2011

Greatful for the internet (Part 2)

Some of this I said in Part 1 but here is another reason to be happy there is an internet. To summarize: living alone and being alone is the pits.

When you live alone, if you have pets you talk to them. Yes, I do talk to my cats. Absent a tag wag, or a blink, they do not talk back. Sometimes you talk outloud to yourself. It helps to hear a voice, even if it is just your own, old, familiar one. Sometimes you find yourself talking to the air. I put out a question. Thankfully, the air does not answer, at least not yet.

You always have to be on your toes that the talking does not become too much of a habit.

If it becomes a habit, you wonder, or catch yourself, doing the things that make you look 'crazy' to others, or at least very alone. Do I talk outloud at the supermarket? Do my lips move when I am having an internal dialogue with myself?

One day I noticed a lady standing next to me in the line at the supermarket. She was talking outloud to herself. She caught my eye. "I live alone" she said and smiled. She needed no further explanation.

I "talk" here and that is okay. 'Crazy' gets assigned only to things you write with which others might disagree. I mentioned to an online friend, someone from high school who reconnected with me, (and with whom I 'talk" almost every day) that I joined a blog group and I was being inundated with emails. Because of the eye issues I end up deleting a lot of them. Reading them all would be impossible for me. Doing so I feel guilty, but there really is no other choice.

"I have been off the computer for maybe a day and have over a hundred of these mails." I kvetched. He wrote back, "Now you know you're not alone."

He is right.

I sign up at a site and people immediately respond. They have much to say and offer and I love to 'hear' it. I put out words and someone says, "Me too.", "Thank you for saying that." or even "You're completely wrong." A dialogue is started. It may end quickly, lots of political debates end that way, or go for a while as support starts, grows and envelopes both or even all of us.

I write here and someone reads what I have to say. I send it out to the air and this time the 'air' answers back.

Monday, April 25, 2011

What's in a name?

I have not had face pain from the trigeminal neuralgia for over 12 years. Because of that I do not like to say I have trigeminal neuralgia (tn) despite the eye pain that continues.

I am not sure if my fight is with myself or with the name. I do not want to think of myself as having trigeminal neuralgia because I do no longer have neuralgia in the area of the trigeminal nerve.

As soon as the first pain came so too came the eye movement and usage pain. That eye also became exquisitely sensitive to light.

After the first neurosurgery, all the pain was gone, including all eye problems. Then, 3 months later, the pain came back in my face. The eye pain came right along with it.

Ultimately I lost the face pain. I still have phantom pain and some 'tics' from that but nothing that I could or would call trigeminal neuralgia.

It is the eye pain that keeps me from working. When asked by surgeons "What do you want to get rid of; the eye pain or the face pain?" my answer was always the same. "It's the eye pain that keeps me from being in the world, from working. That is what I need to have fixed." I always felt the touch induced pain, the spontaneous pains and even the constant pain could be handled. The eye pain never seemed to be tamed, no matter what I did or tried. If you cannot read or ues your eyes for more than a few minutes, there is no way you can work.

Tonight I was thinking about it for the gazillioneth time. How can this eye pain be fixed? Every doctor I talked to, neuroophthalmologist, ophthalmologist, neurosurgeon, neurologist, all said the same thing. "I don't know why you have it, what caused it, or what we can do about it. I'm very sorry." That never made any sense to me. How can someone have something that cannot be fixed, not because they cannot fix it, or at least help it, but because to a one they would add, "I have never seen this before."

I have no idea if being able to categorize or name it makes a difference, but I realize my thinking about it has been wrong all this time. It came with the TN, it went with the TN, and it came back with the TN. So. Maybe it is TN. That has not made it respond to the things that have been done for my TN. Naming it does not seem to help. That started me thinking about some other pain disorders.

RSD, regional sympathetic disorder, now renamed Complex regional pain syndrome (CRPS). Has naming the specific signs and symptoms helped those who suffer from this strange malady? Fibromyalgia. Does that name make a difference for those with the cluster of symptoms that define fibro?

I think it has, not enough to get cures but to get more docs to look into them, more pharmaceutical companies to research and develop drugs more specific to the disorders. And more and more docs to stop naming patients malingerers, lazy people looking for an out or for drugs, or just plain crazy when they come into their offices with the same stories about their pain, where it is, what started it, how they feel.

What's in a name? A rose is a rose is a rose - is my eye pain merely trigeminal neuralgia - but it also may be a very unique rose requiring attention different from any other one.

Saturday, April 23, 2011

So greatful for the internet.

I found a site today and it reminded me again why the internet is so important to me.

The pain started six months after I moved to NYC, too soon to have made any strong friendships, ones that could weather the storm that was my life with trigeminal neuralgia.

The first surgery I had worked for three months. Six weeks after the operation I was working at House Beautiful magazine. Almost immediately I made 2 good friends, Jan and Blanche. We spent many weekends together and often went as a trio to lunch or dinner.

Once the pain returned it was impossible to continue with the relationships. Everytime they invited me to go somewhere I had to say 'No." New friendships can only take so many rejections before they end. No one said anything. It just petered out. Did I not return their calls? Did they not return mine? I do not know. I just know they had lives to live. I had only pain.

My family was not there for me. My half siblings were there for none of the 12 surgeries I ultimately had, starting in 1977. My parents, one or both, came for the first 3 but then stopped. I was truly on my own.

Work and family are where you make friends. I had neither and was in no position to either make a family of my own or meet people to make new friendships.

I did have 2 friends in NYC, both from my apartment building. One I rarely saw and yet I think we both considered each other a 'best friend'. The other was a woman, also disabled, who was not able to get out and around. She told her father "The only reason we are friends is because of our disabilities. Otherwise there is no way we would be friends." She was telling the truth. Necessity makes strange bedfellows, or friendship in our case. Sadly both of them died. I was alone again.

A few years later I moved back to Pennsylvania, only a few minutes away from one sibling and 30 minutes from the other. My brother would leave Florida and move back a few years later.. He also now lived about 30 minutes away from me.

The 2 sisters were friendly at first. Then they decided they did not like me, no idea why and they never discussed any issues with me so we could work things out. Alone once more.

I did make a friend in my townhome community. It was again a friendship based on need rather than shared interests and like. Jane (pseudonym) was a lovely lady who took me everywhere with her. I was unable to drive; I was very dependent on her, but year by year our differences grew stronger and need became the only tether. Ultimately the friendship ended. A newer friendship, with someone I met at a yardsale, was more based on similarities and shared interests. Then she moved to New York.
We talk on the phone almost everyday; but it is not the same as someone there in front of you whom you can see and spend time with.

I sing in the church choir, and know people in the church, but there is no one I can truly call 'friend'. Some have been very kind and friendly, but they all have their own lives. Many work, they have children and grandchildren, their time is filled. There is not much room for someone new. I go to choir rehearsal and service, and fellowship afterward but, ultimately, I have to go home, and it is once again to home alone.

The computer is often a harbinger of pain for me, because of the intense amount of eye work, reading or writing, but I would be bereft without it.

It is here I "talk' to my nephew, the one person in the family brave enough to have sought me out years ago when no one else would. We write almost everyday. On facebook I "talk" to some people from high school, discuss politics or chronic pain or medical issues or even nothing at all, meet new people through websites and now blogs, have lovely, kind people at my website.

If it was not for the internet I would be even so much more alone. Yes, the people, for the most part, are only names (and maybe a picture) but it is people with whom I can feel a connection, sometimes even a kinship. For that I am almost unutterably greatful.

A bad weather day...a bad pain day?

A discussion was started at a support website ( about the weather and the effect it has on those of us with chronic pain.

The joking stereotype tends to be true. The old lady sitting in the rocker "It's gonna rain. My rheumatis' is starting to hurt." is one of the best barometers there is for those with chronic pain.

I no longer have the face pain that is trigeminal neuralgia, only the eye usage and movement pain, but when I did I knew when the weather would get worse. The pain changed and became more insistent and pushing against my face.

I had a neurosurgeon hold his hand up towards the pained part of my face. He told me to close my eyes so I would not know when the touch was coming. Because one of the procedures made that area of my face numb as well (it is a strange amalgam, pain and numbness superimposed) I might not, in his mind, even know when I was being touched there.

Eyes closed I waited, afraid of when he would touch. I started to feel the pain intensify. "Your hand is making the pain worse. I don't know if you're touching me or not but I know you are very close."

"You just expected the pain. That's why you are feeling it." This doctor had another agenda. It was related to my lawsuit against the doctor who numbed my face and the one who had paralyzed it. The last thing he wanted was for me to really have the pain. He preferred if he could call me a liar or, at the least, an exaggerator.

"It has nothing to do with expectations." I tried to explain to him. "When you brought your hand up and it was close to the area the temperature and pressure changed. That caused the pain to get worse."

I told him to put his hand up to his own face. "Do you feel the difference?" He just walked out of the room. No answer from him. He did not want to see the truth of it but it was the perfect example of why we are so sensitive to the weather and so affected by it.

Pressure, changes in temperature, cold, all of these claim our pain.

Weatherman take heed, as someone I know said. We are better at predicting the coming rain than many a computer printout.

Friday, April 22, 2011

Where do you draw the line?

Thursday night was Maundy Thursday, commemorating the Last Supper of Jesus. There was a service at church and the choir would be singing one song.

I sing with the choir every Sunday. Rehearsals are hard for me, usually requiring at least one grain of codeine. It makes me feel logy, and my mouth dry. That makes it harder to sing.

There was only one song for the Thursday service but the choir director wanted us to come in early for a quick rehearsal (the same as on Sundays before service). After the service another rehearsal for the Easter Sunday service. In between, of course, was the ssrvice itself.

I worried all week. Can I do all this on Thursday? How much pain am I going to have? Am I going to be able to tolerate all of the eye work involved? Will I be able to smile and not let on how much pain I am having?

The last question was a gimme. Few people knew that I had pain. For those that did, they did not know that every choir time was a physical fight for me.

I wanted to sing at the service. I definitely wanted to sing for Sunday's Easter service. To do so I had to go to rehearsal. There was no choice.

So the line becomes what is worse, to do what you want and pay the high price or not do it and pay the cost of missing out on something so very important?

I heard this idea the other day. Things are not always black or white. Look hard enough and there may be a third alternative.

What is that alternative when you have pain and it is action specific?

How and when do you decide the pain outweighs the benefit (or enjoyment)?

I do not know. I pose the question. I was glad I went to the service. I could not have done so without staying for the rehearsal but I was also overwhelmed by the pain. The 2 did not cancel each other out.

But already I am anticipating, and fearing, next year.

Monday, April 18, 2011

It only takes a moment (part 2)

I keep promising myself I will get an egg timer. Not for eggs, but it would be nice to have it for that too. I need one to keep me from pretending I am not at the point where I cannot tolerate any more eye usage. To not continue to the point where the pain from the eye movement sickens me.

This invariably comes about because I am on the computer, my major source of reading and writing, too long.

I stopped reading books.

That is not quite true. I do read them but not the way I like to or want to. Before the pain I read a book in one or two sittings, no matter the length. Finishing a book in onoe or two sittings assured I never forgot who was whom, what they were doing, why they were in the place they were or who was the one who got shot and who did the shooting (I love mysteries).

Since the pain the book has to be one that will not interest me enough to make me want to continue reading on past my eye usage limit. If the chapters are short or the author uses chapter breaks, that is a book for me. Unwittingly the author has given me places where, unless I get too interested in the plot or points he's making, I can put it down.

Even now I fight myself.

I have been on the computer for a while. As long as I am not consistently writing or reading I can stay on for a long time. My eye usage, if added up does not come to a lot but more important, it is done in little chunks of time, a minute here, maybe 5 minutes there. Short enough spurts that it can replenish itself during the down time.

Writing this note requires me to not only write, but stop, check my typing, check the words. Is it legible? Does it make sense? How bad is my grammar? All of this is concentrated eye work. I think to myself, you can stop, save it as a draft and come back to it but no, I do not want to do that. My train of thought is on this now. Tomorrow I may not be thinking about what I want to say in the same way as I am now.

It will not take much longer to finish this post anyway. Now, where was I?
Oh yes, an egg timer.

I could find what my optimal eye usage time is before the pain starts to kick in. Then wind up the timer and let that decide for me when I have to stop.

If I do that though I have to admit I cannot work as long as I want to. It would mean my giving in to the pain, letting it make even more choices for me.

The irony is that it does make the choice whether I want it to or not.

The pain creeps in. I refuse to stop. The next thing I know I am forced to stop using my eyes, to do anything, even just walking to another room in the house is too much, my eyes moving as I rise from the chair, checking for any objects in my way, noticing the cat. Once I get to my room, I rush to the bed, the pain now bad enough that I am feeling sick to my stomach. I lie still, not moving my head at all, hoping and willing my eyes stay fixed in one position. The pain is so all consuming it refuses to leave. Instead of the half hour to an hour I have to wait when I use my intelligence and common sense and stop whatever reading or writing I was doing when the pain just starts I become unable to do anything, sometimes for up to 2 hours, the pain a chain from which I cannot unyoke.

It would not be enough to get a clock. That requires a lot of work to keep on setting it to ring in 20 minutes. I could get a large one and just keep an eye on the time but that means using my eye to see if I have any time left, circular silliness.

The timer dings, no way to ignore it or need to watch it.

It is such an easy answer. Doing it means saying I cannot do what I want when I want. It means, bottom line, admitting the pain controls my life.

Maybe writing it out will pound some sense into me. If pushed, I would have to admit that schedulinig the eye work would be a way of me taking control of the pain.

And wouldn't that be a needed change?

Sunday, April 17, 2011

On computer early so thought I'd add a thought

Off to Church in a few minutes and I really like the song we're singing. It is such a wonderful moment when the anticipation and the doing come together so the morning becomes a smile. ((*_*))

Saturday, April 16, 2011

Dreams, songs, and continuity.

I used to live in NYC. I had dreams of being an actress/singer and then ultimately having my own small cabaret show; sitting on stage, alone in an intimate little theater, the patrons and I having a dialogue as I sang out thoughts, and feelings, through lyrics that spoke volumes.

The pain started 6 months after I moved to the city. I worked for a social worker as his receptionist. I had time to take a few classes and go to some auditions. Despite horrendous stage fright I forced myself to get up and sing.

I was lucky enough to do one Broadway audition.

I was awful. I looked the part - petite and dark haired, something easy to do (be?). Unfortunately it had not occurred to me that the last thing you do when you are afraid to sing is choose a slow song. The slower the song the more time for the fear to bubble through and the notes to tremble and waiver.

My song was slow. One of my favorites PURE IMAGINATION from Willy Wonka and the Chocolate Factory.

Come with me and we'll be in a world of pure imagination
Take a look and you'll see into your imagination
We'll begin with a spin traveling in a world of my creation
Look and see we'll defy explanation
If you want to view paradise simply look around and view it
Anything you want to, do it
Want to change the world? There's nothing to it

There is no life I know to compare with pure imagination
Living there you'll be free if you truly wish to be.*

What a wonderful song. It spoke to me. As I bleated out the words, my voice vibrating on each note - more a sheep than a person singing, they let me continue. 16 bars or so I warbled before they sang out "Thank you. Next!"

Once the pain started, the dream of stage work became nothing but a taunt. After my face was paralyzed during a surgery it became a nightmare.

My life was gone. It was not going to come back.

My family was never there for me. No sibling called, sent a card, or visited during any of my many hospitalizations or any of the 12 neurosurgeries. I was alone. Imagination was all that sustained me. The fantasy that soon this would all be over or it was even a dream, albeit a very, very long one. At some point I would awaken to my life and the future I intended.

I think this is common, not only for those with chronic pain but any chronic illness, or unfathomable loss.

I wish I had a magic wand. I could tell you this is how you get over it, this is how you go on, this is how you accept it. (Of course better yet - this is how you make it go away.)

I read a lot of posts at verious chronic pain sites that say 'get over it -that is how you get over it'.

I do not think that is the answer. It is easy to say 'accept it and then get on with your life, with your future'. For me, even after 30 years, I live with those lyrics. "There is no life I know to compare with pure imagination. Living there you'll be free if you truly wish to be.*

In my imagination I am on that small stage, the audience with me as I spin out tales of love and life.

I am a late bloomer. I hope at some point I can instead look to the words "If you want to view paradise simply look around and view it
Anything you want to, do it." I know anything is a stretch but the possibilities are still there. Maybe not the ones I always envisioned but new and different ones not only just as challenging but also equally fulfilling.

*[| From: |]

Friday, April 15, 2011

It only takes a moment.

I wrote in an earlier post about 'hiding the pain". I realized I have not come clean about the pain here. I still do not understand, I mean I do in the sense of the 'why' of my pain but not the way, how, in the span of a second you can go from being fine to being almost completely disabled. Especially when the pain is 'only' in a part of my face.

One second I was brushing my hair. The next I was seized by a pain of such horrificness I could not move. The pain came like a bolt of lightning out of the sky. It tore through my left temple. It went almost as quickly as it came. Good at hiding my feelings, physical as well as emotional, I decided to ignore it. It decided I would not be allowed to do that. It came on again and again. Out of the blue, any touch, even the littlest of breeze and the pain attacked. In addition I had constant pain as well. It was only in the top 2/3rds of the left side of my face. Yet it almost completely disabled me.

I was no longer able to wash my face or hair on that side. The pain of the touch was too horrendous. My left eye was involved as well. Any use of it, to read, to look to the left or the right, up or down, or the normal unconscious movement ratcheted up the pain to another notch, one I thought it could never reach.

All of the narcotics they gave me rarely helped. The major benefit was when they made me feel logy and cloudy enough I was less aware of the pain, as well as almost everything else.

I have had procedures that added pain to areas of my face where there was none. Surgeries that paralyzed half my face, caused me to be unable to walk for a few months(I was like a newborn colt, my legs criss crossing and sometimes flailing), caused my neck to 'fall down', so much that it is now held up with 2 clamps and 12 pins, and brain implants that sometimes make me feel more like a robot than wholly human.

Why did I do all this? How could someone consent to so much? The paralysis and added pain were the result of malpractice so that does not really count. The other side effects were mostly known.

The reason was simple. I let the pain make my decisions for me. When you are in severe, unremitting, unreachable pain how can you not let them cut into your head? I used to think that only happened when you had something really wrong, like a brain tumor. Pain? For goodness sakes. Pain could never rise to the level I had it or, even worse, let me consent to repeated brain surgeries.

I will write in other posts more about the pain itself. I think this is enough for now. For you and for me.

Wednesday, April 13, 2011

We are not addicts, fakers, criminals. We are in pain.

I usually do not write 2 times in a day but after reading some of the responses in a blog on opiates and chronic pain patients I had to write.

One writer seems to think the terms 'user' and chronic pain patient who is prescribed pain medications is synonomous. It is the same misinformation that allows writers and others to not differentiate between addiction and physical dependence.

User is someone who uses. It is the term we tend to use for addicts, for those who take narcotics for 'fun' and getting 'high'.

I know of no person in pain who enjoys taking narcotics. The feeling of being tired, clumsy, doped, and dopey, cotton-mouthed, and more is as far from enjoyable as you can get. If, however, it lets us get out of bed, tie our shoes, get around, for me use my eyes for a few minutes more before the pain becomes intolerable, it is a life saver.

Most pain patients do not become addicted. "Addiction is a chronic, often relapsing brain disease that causes compulsive drug seeking and use, despite harmful consequences to the addicted individual and to those around him or her." This definition is from the NIDA, National Institute of Drug Abuse. They may become dependent, described as"...when the neurons adapt to the repeated drug exposure and only function normally in the presence of the drug. When the drug is withdrawn, several physiologic reactions occur. These can be mild (e.g., for caffeine) or even life threatening (e.g., for alcohol). This is known as the withdrawal syndrome.

Often I hear pain patients lament, "I cannot stand taking these drugs. They make me feel awful but they help me to function. How do I accept needing them in order to live?" The reply is that "We are no different than diabetics. If this is what we need than think of it as an insulin for pain. Diabetics need it to live and we need to take these in order to continue our daily lives"

As long as those with chronic intractable pain are seen more as fakers, drug seekers, and liars, what some in the other blog refer to them as (and some of this from doctors) than people in pain who have run out of other therapeutic options, we will never be on an equal par with others who suffer from a medical disorder.

'Appropriate' affect", "Inappropriate affect" - is humor a bad thing?

I fell this past Monday. Splat, right on my face. My nose was bleeding profusely, turning all sorts of colors it is not supposed to be.

Strangely I was not in pain. I had some aches here and there but nothing spectacular. Mostly I felt perplexed, how did I do that? and embarrassed.

The more uncomfortable I feel the more I smile and joke around.

Ambulance attendant: "We think you may have broken your nose."
Me: "That's okay. I could use a nose job."

Ambulance attendant: "I found your mirror but it is all broken."
Me: "Uh Oh. 7 years more bad luck."

He and I laughed and joked some more. Then I arrived at the hospital. No one really stayed around long enough for me to joke with them. I wondered though. Is it in the records that my affect was off because I was joking around?

I grew up being told, when punished, "You get into your bedroom and do not come out until you are smiling. I don't care how you feel, I expect a smile."

It was a lesson I learned well. The joking was an offshoot of the sometimes inappropriate smile.

I remember being in the hospital being evaluated for the pain. As often occurs with chronic pain patients I was seen by a psychiatrist.

Psychiatrist:"Your pain cannot be as bad as you say. You are always smiling."
Me: "The more I hurt the more I smile. It's something I learned in childhood."

His chart note read 'smiles inappropriately.' He ignored my explanation, something a psychiatrist should have attended to. Instead he concluded that maybe my pain was not as bad or disabling as I said.

I can understand that. Your pain is horrific and your response is to look happy? Something cannot be right.

The only problem is I have found the opposite to be true as well.

People who are in pain tell me their doctors say they are malingerers or faking it because they cry too much or talk about it too much. Research has shown women, for instance, are less believed then men, when they come to the doctor complaining of chronic pain. If they look well they are disbelieved and if they look disheveled they are believed to be depressed rather than in pain.

Pain being subjective is a problem when it comes to being believed. It is made worse when doctors jump to conclusions without asking us: Why do you laugh? Why do you cry?

Sunday, April 10, 2011

Platitudes and quotes and why what may make sense in the 'real' world doesn't when you live with pain

I know some people believe these sayings are helpful: Get over it and move on. Good things come to those who wait. When life gives you lemons make lemonade. Whatever doesn't kill you makes you stronger.

No They are not.

You cannot get over it if it does not stop. There is no way to move on when the pain continues to beat you up. People who tell you this - to 'move on' do not 'get' chronic pain. If I sprain my ankle but keep limping weeks after it is better or tell the story of how I did it over and over again - for sure I need to get over it. But I cannot get over something that does not go away.

When in pain waiting is not an option. Nothing good can come of waiting. Maybe the pain will go away. Give it more time. I have given it 6 weeks, 3 months, 6 months, 10 years, 30 years. Nothing comes out of waiting but more frustration.

Pain is not a lemon. There is no way to make something sweet out of it.

I may learn a lot of things about myself because of the pain.
For instance, I do not think of myself as courageous. I do not think living with pain or fighting it makes me heroic. In one of those late night college dorm conversations where all sorts of theoretical questions are raised, ideas that seem out of the realm of our possibilities, had you asked me "Do you think you could go through all sorts of surgery, even experimental, because you have chronic constant unrelievable pain?" my first response would have been "What? No one could have such a thing." If I was forced to answer I would have replied "No. Never. I do not know what I would do but I could never, ever imagine such an horrendous thing." Even today it sometimes seems impossible that this is what my life turned out to be.

Some people think it is heroic or courageous to make the fight. I do not feel it is. Courage and heroics seem to me to be the result of a conscious choice. Most of my decisions as to what I allowed to be done to me or agreed to try were the result of sheer life instinct - I must stop the pain. No way is it the end result of turning the pain into something it is not - no lemon into lemonade.

The pain does not kill, at least not all at once. Little slivers, bigger chunks of hopes, expectations, desires. Those are killed. Maybe strength is one result, the strength of resolve to do whatever you must and whatever you can to end the pain. Maybe that last cliche is true. It did not kill me. Maybe I am stronger in many ways I could never have fathomed and ways I still do not realize.

Tuesday, April 5, 2011

Drugs, pain, and belief

I am reading and commenting in another blog site about doctors and opiod prescriptions for chronic pain. There is a lot of response from folks saying they cannot tell the difference between someone who comes to the office with real pain and someone who is posing as a person in pain so they can get opiates like oxycontin.

A migraine commercial has the actress saying "These things are for real." Do you have to say "This is for real" when you talk about medication for, say, diabetes?

I can see someone saying "Well, of course diabetes you can see with the blood test results so it is not subjective like chronic pain."

Migraines have specific criteria associated with them. Auras, nausea, severe light sensitivity. Nausea is subjective. Absent vomiting you have to believe the patient that she is honestly feeling sick to her stomach. Light sensitivity. You have to believe the lights truly hurt her eyes.

My pain, trigeminsl neuralgia, used to be called the 'worst pain known to man' and the 'suicide disease'. (These terms are now often also used when referring to RSD (regional complex disorder, another severe often disabling pain disorder).

I showed the neuroophthalmologist where my pain was. I described it to him "like a knife slicing thorugh my left temple whenever something touches against the area, even the lightest of breeze or it comes on on its own but it is also there all the time." I flinched everytime it looked like he was going to touch the area and set off my pain. All of that was subjective or a fear response to the thought of the pain being triggered.

Surgery proved the cause of my pain. I have a birth defect that resulted in dozens, maybe more, of extra blood vessels throughout the affected side of my brain. Some of them were against the nerve, enrobing it. When they were removed the pain was gone 99.999%.

I have a birthmark in the area where the pain was. It is vascularized so, unlike most birthmarks, it turned bright red when I was embarrassed, stressed, etc. A little tiny, tiny red area still remained after the surgery. Within 3 months the birthmark returned as the blood vessels grew back. With the renewed blood supply came the pain, back as horrible and debilitating as when it first started. And as invisible.

My doctors tried all sorts of narcotic medications. Despite the proof of the pain and reason, a few docs refused to 'believe' in my pain. Most did despite it being a subjective complaint. It became more and more only a subjective complaint as surgery after surgery left me with phantom pain, a pain without anything but subjectivity to describe and diagnose it.

Yes fibromyalgia and RSD are relatively new disorders in the scheme of things. As time has gone by there has been more research and criteria to describe them, making them not wholly subjective.

I, and my cohorts in pain, know what it feels like. We know what the medications do to us. Many of us describe feeling logy, brain clouded, groggy, dry of mouth and slow of thought.

We do not like these drugs. We do not want them but, even more, we want to have our pain reduced. Junkies and pleasure seekers may like these drugs. For the most part we hate them but when all you have is someting you hate, something you do not want to have to take, you do what you have to. We take them hoping at some point in time we no longer have to defend our pain, or defend taking medications we do not like.

Sunday, April 3, 2011

Discounting the positive (and so nice when you don't)

I know an elderly lady who ends many a conversation, or begins them for that matter, with a reminder "I'm a dummy." I keep telling her she is not. "But I forget my words. I have to stop and start when I am talking to people." I remind her 1. she is 89. The fact that she is able to hold an intelligent conversation is something of which she should be proud. 2. I forget words a lot as do many people. 3. There is nothing wrong with actually thinking before you speak. No matter what I say she replies with "No. I am stupid. I am a dummy." I tell her her hair looks nice. "Oh no it is all flattened out." I remark that I like what she is wearing. "This. It is just an old pair of pants."

"You have to stop doing that", I tell her. "Everytime I say something nice to you you discount it." The last time we had that conversation was this past Friday. And yesterday, Saturday, I had to tell myself advice giver, advise yourself.

A few months ago I had signed up to take a table at a health fair. I would be there as a hypnotherapist and relaxation/stress reduction educator. I was not seeing clients but hoped I might be able to by the time the fair came around and this way I could drum up some business.

Unfortunately I am still not able to see clients. As a result I was not looking forward to the fair. In fact, until reminded of it about a week ago I had completely forgotten about it.

I have trouble, because of the eye pain, driving in the rain. I was keeping my fingers crossed for the weather to be bad. I would have a built in excuse not to go. Of course, it was a beautiful day.

Feeling guilty because I had given my word I would be there, I drove the hour into the city and set up my table. The other folks were nice. The turnout abysmal. Maybe 15 people. Four hours was a long time when you were spending most of it just sitting at your table waiting.

Before setting out I had worries. On the one hand if they had the turnout they were estimating - about 300 people, I would be in bad pain from using my eye. On the other, what if no one came? What a waste of time, car usage and gas.

During the four hours there I worked with about 8 people. I taught each of them a relaxation exercise that takes about 1 - 2 minutes. Every one of them loved it. It involved closing their eyes. As soon as they opened them they were ecstatic about how relaxed they felt. One of the things I love about doing hypnotherapy and teaching the exercises is seeing people have success and usually fairly immediately. It was terrific to have this with them.

Finally the day was ended and I packed up the few things I had brought with me and walked out to my car.

Man, what a waste of a day. No one came. It will take me all this time to drive back home and the cost of the gas and who knows if there will be traffic. I'm bummed. What a mistake to have come.

Those thoughts were internal. "Wait a minute." I said outloud. "Didn't you enjoy teaching those people even if it was only those 8?" I founding myself nodding. "Yeah. I did."

"Did you feel proud of yourself that you were successful teaching them the exercise?" Again the answer was "Yes."

So, if you enjoyed it and if you felt good about what you did and what they experienced, then was't it, in fact, a really good day?

I had a choice. I could have let myself stay in that darker place. I could have let even more negative thoughts fester. It's a good thing not a lot of people came. That would have been awful. I would have been in such pain. I'll never be so stupid as to sign up for something like this ever again.

It is a good thing I gave my friend the advice so recently. Otherwise I might not have remembered to give it to myself. Otherwise a good day would have registered only as a bad. And what a shame and loss that would have been.