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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, December 23, 2011


I wanted to just be positive here, before the holiday, but as I thought about it those of us in pain often have this hurtful (in many ways) quandry.

Christmas Eve is our candlelight service at Church. The choir will be singing a number of songs. We will also be doing a little 'choreography', fanning out along the side aisles to help light the candles of the congregation.

Candles and I are not friends. The flickering hurts my left eye, the movement sets off the pain. The turning on and off of the lights are also a source of pain as the eye reacts to the light, dark, light again.

Using the eye to read the music, the opening of my mouth to sing pulling on the whole side of my face (because of the tightness from the paralysis), even the walking, watching where I am moving, a use of the eye rarely considered. These all have one result. Pain.

I take the codeine more often now that the stimulator is not working. To go the service will mean a lot of codeine. A lot of feeling cloudy, a little slowing of my responses, and worse for singing, a mouth as dry as a bale of cotton.

I want to do this service. It is, essentially, my Christmas.

I sent a few gifts off in the mail but I have noone here, in front of me, to gift or to gift me, or to eat breakfast or dinner with. That is nothing new anymore. I have somewhat come to acceptance with that. Christmas has a bigger meaning, if you are Christian, and I try to keep to that notion. It helps, a lot.

But I miss the beauty of Christmas and a big part of that is the candlelight service. All of us with chronic pain have the situation when the question becomes gigantic. Can I do (thus and so)? I want to, I look forward to it, it is a major event for me. But can I do it? Can I stand the increased pain I know it will cause? Will the pain interfere to where it takes me to the edge of the tolerable level of pain? Will the drug ruin it for me anyway?

I want to do this service. Badly. This is one of the times where the question has to be asked.

Does the pain make my decision or do I overrule the pain and accept the repercussions?

Tuesday, December 20, 2011


I sang a solo last weekend at our annual women's Christmas Tea.

The choir director picked I WONDER AS I WANDER.

I have always had stage fright. I hoped that it would not effect me as much this time.

As they say, those who can do, those who can't teach.

I have taught a few people ways to get over their performance fears.

"Bend your knees slightly. It relaxes your body as you sing.", usually my first instruction to my students. A tiny thing but a gigantic payoff. Other suggestions were similar. "Let your shoulders fall naturally. Don't hold them up to your ears." And so on.

I did not remember to do any of it. David, the choir director, spent a lot of time helping me to prepare, telling me, "bemd your knees. Relax your body." I laughed. "Oh boy I teach others to do it but I completely forgot about it." I bent my knees, lowered my shoulders, opened my fists. It helped. A lot.

I practiced at home. I visualized the room. I imagined the people. This would be different for me; the first time I would be able to see right into the faces of my audience.

My hope for my life had been to do just this; a cabaret moment. Telling a story to an audience through song. I wondered as I wandered. And this is what I thought about. This was my chance to do what I expected to do with my life.

I stood before the audience. I felt okay, no shakes. David played the piano introduction. The first word came out of my mouth. Immediately my body started shaking, my voice warbled.

The more I thought,Okay, calm down, these people are your friends, people you know, and you know the song. Enjoy it. the more I shook.

I continued to sing. I hit my notes. I felt I got some of the story out the way I meant to, emphasizing some worda and ideas, deemphasizing others.
I wondered though. How bad did it sound to them? How bad did it look?

"You were wonderful." they said. Nice, but these were nice people.

"How bad was it? How scared did I seem and sound?", I asked someone I trusted to answer honestly.

"Scared?" Martha looked at me with surprise. "You looked so calm and comfortable. I was amazed how relaxed you seemed."

It is funny how people's perception is so different from what we feel, or even what is really happening.

I love telling this story:

When I was in dinner theater we did CAROUSEL. Instead of an orchestra the producers decided to use a tape for the music.

It was the finale, the song When You Walk Through A Storm. It was a heavyduty moment, the memorial service for the character Billy Bigelow. We stood and the music did not start. We continued to stand, waiting. Nothing. The lead started to sing, in the wrong key. Some tried to join in but it was pretty bad. And then the music started. At the beginning. We started anew. And then the tape stopped. We started to sing. And then it stopped. We stopped. It started again. We started again. And this time got through the song. It was a debacle. So embarrassing.

And I cannot tell you how many people later came up to us and said "The finale was so moving. The most emotional of any CAROUSEL I have seen."


What you see and what they get. What you feel, what they get from it.


Tuesday, December 13, 2011


It is the holiday season. Commericals and advertisements everywhere. Give. Give a gift. Give. Make a donation. Give. Of your time.

What about us, those in chronic intractable pain? I think we have a different give agenda and history.

The first two 'gives' are almost antithetical; to give in or to give up.

I decide, for me, to read or write, even this post. The pain gets really bad. Do I give up? Stop what I am doing? Get so angry/depressed that I decide no more blog. No more books, It is not even worth the try anymore. The pain is my life.

For those with body pain - do I not get out of bed, tie my shoes, make lunch, for many who are still able to work, resign or quit? Ohhh. Resign. That is a perfect word.

Give up. The pain is stronger then I am. Resign to the fate of the pain.

I do not have to.

I could give in instead. Surrender to the needs of the pain. Take the medication(s). Accept the sensations of narcotic. Stop all activity. Rest. My body, or for me, my eye. Let it be my life. Until I have recuperated enough to start up again. That does not always feel good. It helps the pain but still feels a surrender, a capitulation. Captivity to the pain.

And then the third 'Give".

Give myself the freedom to accept the pain as a part of my life, but not my life.

Give myself permission to do what I need to to incorporate the reality of pain into my day, into my life.

Give myself the pat on the back. "I can do it."

It is funny. So many people in pain tell me stories about friends, colleagues, family, mocking their pain, disbelieving it, refusing to hear the cry of "I can't" or "Help me."

In my own life and in theirs, it is rare, sometimes never, to hear the positive "Good for you. You succeed in having a life in spite of pain. You soldier on and do what you need to to not let the pain take you down." So few, if ever, "I am proud of you, of the fight you make to get through each day, of doing what you need to do to live."

This is my give to you.

I am proud of you. You put so much effort into living with the pain and getting past it so that you have a life. You agree to try things that most people would not agree to in order to try and help or even stop the pain. Your fight, our fight, is a hard one, one that those who fall into a chair and moan when the hammer hits their thumb, could never imagine.

Give. To yourself. All of the kudos and back pats, those that have not come and those that you have not given yourself. You deserve it.

Tuesday, December 6, 2011


Prophylaxis - just in case.

I keep the stimulator on at the lowest level - timed to come on 1 minute every 1 1/2 hours, but just in case they can replace it, or better yet fix it, I will keep it on, even though it has stopped helping. The pain is coming sooner, the eye time for reading or just using my eye in general is getting shorter and shorter before the pain kicks in.

I hate taking the codeine. Even after all these years it still feels like a sign of weakness.

Now I have to make a choice. Do I keep fighting the pain and fighting doing something about it? That tactic is no good. Not unless I want to take to my bed, just me and the 13" TV. But even then a show where the colors are very bright or there is a lot of moving about, the pain invites itself in.

I have choir and chorus at church. Christmas is coming, more music then usual, longer rehearsal time, more to sing during the service. What choice do I have?

The codeine has never helped. Well, almost never. When the pain was at its worst I sometimes took 3, 4, onoe memorial day, 5 grains - 5 tablets - in an hour. The prescribed dosage is 1 pill every 4 hours. The pain stayed but the pills made me feel like I was encased in gauze, the pain outside of me. The downside is it took 5 pills to do that.

So I decide maybe I will take it prophylactically. I have been doing that somewhat even before the stimulator stopped helping. Instead of waiting to get to rehearsal I would take half a codeine on my way there. I would always need at least one more while we were singing, and reading the music scores, but at least I was maybe a half an hour ahead of the game. No, not really. As long as the pain rose to a higher level what was the point of taking it before I got there?

Here is an idea. Think about it. What if, instead, I take it an hour before I get there? The maximum point of impact is 2 - 3 hours, an hour to 'hit' and an hour to wear off - so my thinking goes.

I dp that. And find my mouth is so dry I can barely sing. Plus I still need more while at rehearsal or during the service.

I have not figured out what to do. The prophylactic pill seems to make the most sense but makes me feel worse; cloudy, tired, and cotton mouthed.
To wait and let the pain get there first is non-sensical.

I kind of hoped writing this would give me the answer. Instead I gulp another codeine while writing this post.

What is the equation of pill to pain and when? Boy. I wish for all of us I had the answer.

Thursday, November 24, 2011

Thanks giving.

The holidays are such a weird time for me.

On the one hand, I leave the way my family treated me, and ultimately abandoned me, behind me most of the time. When I think about considering more surgery for the stimulator or when I fell in the street and had no one to call, of course they come to mind; and the way they treated me comes tagging alone; but mostly they are not there.

My aloneness and lonliness is a part of my Thanksgiving and Christmas just as much as a Christmas tree, turkey and stuffing or presents are for most people.

My nephew, the one person brave enough to brave his family and get to know me, came to visit a few days ago, as he has for the last couple of years whenever he is in town. It is my one visitor, the person I can call family, My excitement and delight over the visit is palpable.

In church the ministers talk about family and the holiday. Last Sunday one talked about everyone having someone to be with. That is not me. Later I tell him that, but feel I am not heard. Honestly, there is nothing he can do about it anyway.

My friend who moved to NY suggests I go to the dinner they have at the church, provided by the food pantry. I am suspect but one year decide to go. It was as I worried, a group of people, each alone, many looking perplexed or depressed, even angry. I feel they are glad to have this meal and this place, but I know staying would only aggravate all of my feelings about the holiday.

I feel some, all(?), at the dinner may not have family. The people who are supposed to be mine live 15 and 35 minutes away but that is, in reality, a galaxy of distance.

They say the opposite of love is not hate, it is indifference. That is what it is, not only now but essentially always.

A memory comes to mind. I was at the dinner table. We had a family table but it did not work as they advertise.

I was maybe 8. I wanted one of them, some of them, to acknowledge I was there. To give presence to my invisibility.

"I bought some candy." I pipe up. "It's in penny candy jars in my room, just like in a candy store. Come to my room and buy some, just for a penny, okay? You can get some and visit me." I implore. My child's heart and soul thinks candy will work, like at a store. Or maybe more apt, a dog. Hold out a treat and they will come to you and be your friend.

They do not come. The canisters stay full. I do not eat the sweets, thinking Maybe today. Maybe today they will come and talk to me.

The house was built to reinforce the separation. My 2 sisters and brother had their rooms at one end. My parents and I were at the other. In between was a playroom, a dining room, a living room and a corridor. It was as though it was 2 separate homes.

We came together for dinner, for passover sedars and Thanksgiving, Christmas, and easter breakfasts and dinners. At one point my one sister took me to work with her: we were friends. The other sister and I double date and then, whoosh, it is gone, and I am persona non grata.

For a number of years I was invited to Thanksgiving at one sister's and Christmas at another but that was it. And then even that stopped. No rhyme, no reason.


I have a nephew. Family. More then many people have, even if only by one.

I have a roof over my head and and at least for the immediate present, funds to pay for it.

I can walk and talk, and see, and feel, and think. The last surgery I had there was a chance that would not be so. I am doubly grateful for a body that works.

I am always grateful and thankful for the Miracle. I can wash my face and go outside even with the wind, or cold, or breeze. It is consistently overwhelming. I do not want to think about when I could not do those things, what it felt like, but I do not have to remember the horror of that pain to know the wonder of being able to do them now.

I do have friends. I may almost never see them but I talk with them online or the phone, very often.

There is a lot to be thankful for: it is Thanksgiving.

It hurts. I cannot say it does not, to be alone for the holidays. But it is also a time for me to be very full of thanks. I work to hold onto that. I think for a good part of the time I am successful. And for that too I am thankful.

Friday, November 18, 2011

116 MILLION IN PAIN. For real?

"Put chronic pain behind you, use our hypnosis tapes."
"A revolutionary method for stopping chronic pain."
"A solution to chronic pain?: Can an all-natural dietary supplement from tobacco plants help ease your pain?"
Excedrin ad for migraine medicine. "These things are for real."

I look at these fake promises and the ad starts to make sense to me.

I know many people do not believe there is a real thing such as chronic intractable pain. Why should they?

Studies, the most recent that 116 million people have chronic pain relies on self-reporting and includes pain within the last 12 months from anything including headaches, arthritis, back pain; entities that we all have have at one time or another. What does arthritis, for instance, or rheumatism mean?

I do not mean to discount the normal pain discomforts and outright pain of life. But a diagnosed disorder, with specific diagnostic criterion, is very different then when someone personally assigns a name to their pain.

I would like to see a study where they study the numbers of those with the disorders where pain is the sole or main complaint. These are different, at least to me, then a more generalized count of all who say they are in pain.

When statistics are printed in the media about the numbers of those with diabetes or cancer or other diseases, those reports are believed. Everyone knows what those names mean. The term chronic pain has come to mean everything from a sprained ankle if the pain lasts for 12 weeks or longer, to the pain of CRPS, trigeminal neuralgia and others.

For sure, those of us who live with intractable pain would like to have a 'revolutionary method for stopping chronic pain" or an hypnosis tape that would end our suffering (as a hypnotherapist it kind of kills me to lump this in). A plant that has curative properties, boy wouldn't that be wonderful?

Our pain is real. It needs real answers and not false promises. It is easier to offer these things when too many people think the disease is also a fake.

"Goals of the study were to determine the prevalence by age and gender of common chronic pain conditions (headache, back or neck pain, arthritis or joint pain, and others), plus their association with both depressive and anxiety disorders."

Tuesday, November 15, 2011


I noticed a person at church a few Sundays ago. His expression was one of pain; the hard seat, other things on his mind, wanting to be anywhere else then there or who knows what. Immediately the expression, a pained expression, came to mind. And my mind wandered to the meaning of that phrase.

I think I often wear a pained expression even when I do not want anyone to know I am in physical pain. The body often belies what you want to keep locked away.

I do not want people to know I am in pain; it puts them off, they do not know what to say, it makes them uncomfortable. I think my family history, of being treated very poorly when I was ill or in pain, adds to that need to keep it tucked within myself.

The last church I was in was very small. When I joined the choir there were only 12 of us.

At that time I had all of the pain, the touch pain, the constant, and the triggered as well as the eye pain.

Every rehearsal I started out okay, the pain manageable. I smiled and was nice, even jokey. I joined in the conversations, laughed at other's jokes. And then, 20 minutes, a half hour into it I withdrew, completely. I looked at no one, my head was down, I pretty much ignored the music. The pain was overwhelming but I thought I was keeping it secret.

"Did we do something to you?" asked one of the members. "Are you mad at us?"

I was dumbfounded. Why would they think that? When I asked the answer was simple. "Your head is down and you stop talking or even acting like part of the group." Oh. My whole body had taken on a pained expression whether I wanted to show pain or not. Once I explained everyone was very kind and sweet about it. The pain was no longer an issue. It was okay to be in pain.

But I think about it now when I wonder why I have so much trouble making friends, being included. I know people see that my eye usually looks 'off' but - Do I wear a pained expression? Do I look like I am in physical pain? Do I look like I am unpleasant? Do I wear the corners of my mouth turned down or my jaw clenched? Can people tell the difference between a pained expression; I am in pain vs. a pained expression, I am unhappy, unpleasant, sad, etc? And does the reason for the expression make a difference?

It definitely does not in the beginning, after all how would someone know the why? Maybe after folks get to know you a constant pained expression from indifference or disinterest, etc., sends them away.

The question is, after they get to know you, does an expression of real physical pain, the constant of real physical pain, is that a turnoff too?

Friday, November 11, 2011


I do not know if you have seen this commercial for an antacid. A man walks in front of the camera. He has flames about him, indicating 'agita'. He says words to the effect of "If I eat now, I have to take an antacid. If I am going to lunch do I need to take another one? If I get a snack now then I have to take an antacid after or should I take it before? Then I am having dinner. Do I take the antacid before or wait until after? And so on.

That is the way I feel about my stimulator implant.

I wrote about something not being right in a post a few posts back (The What if's and Bizarroworld). I ended the first with the words, "Don't anticipate." "Be in the here and now."

The 'What if' is now.

Sue (pseuconym), the company representative, talked with the engineers at Medtronic (the company that produced the implant). They said "We're stumped." Not good. She is waiting now to talk with the neurosurgeon here in Philly (not the one who put in the implant). He is away until next week. But does it really matter? Sue told me the answer is most probably take it out because no one knows what is wrong.

Take it out. I want the doctor who put it in to take it out if it has to be removed, but he is in Colorado. The cost alone is prohibitive and then I have the cats to worry about. Even with a cat sitter coming in once or 2x a day would they ruin the house? This would be the first time in their 10 years of life that I would be away for more than 3 days, and that happened only once. (And then there is the What If something goes wrong and I have to be away longer.)

If I get it removed do I get another one put in? The first surgery was, to be brazenly honest, torture, pure and simple. I was under but had to be awakened, again and again, to answer the question, "Where is the pain?" "Where is it now?" The pain was horrendous, trigeminal neuralgia in its purest and most painful and hateful form. Being put back to 'sleep' did nothing to erase the it, or the fear.

Will they put in another? It was experimental. Would insurance pay? If they do, will the replacement be able to be placed in exactly the same spot? Will I lose the benefit as I did with the second spinal implant to replace the first that worked 85%, that I lost to infection? Who knows?

The major part of the pain is gone, due to the Miracle (or whatever you wish to call it). I remain disabled by the eye pain. I cannot work. But the pain is only eye movement and eye usage. Is that a sufficient reason for them to replace it?

The computer chip is attached to the covering of my brain. It has to be pulled or precisely cut off. Could that cause some brain damage? Who knows? I could be told "No." but if you have to pull enough, slice too many times, I would think there could well be a moment of 'Whoops'.

So, I am the man with agita. If I keep it turned off I get no benefit. If I turn it on, I get no benefit and some exceedingly uncomfortable sensations. If I take it out I would prefer to go to Colorado. If I go to Colorado I need airfare and a catsitter. If they take it out, can I get a new one? Will they pull too hard and damage my brain? Will it work? Implant now, implant later? Working implant or weird, unpleasant sensation? Benefit of stimulation or fear of the surgery? Possible brain damage or stay where I am? Asking the surgeon and hearing "Yes" or asking the surgeon and hearing "No." (or "I don't know")? It is enough to give you indigestion.

Being in the here and now is much harder when the present informs the future. My options are known. Ultimately, unless they say "No." it will be up to me. I have already increased my codeine and reduced my eye time. This present, that might also be the future, is abhorrent.

Honestly, it is a mess. All I can do right now is take an antacid and keep my fingers crossed..

Tuesday, November 8, 2011


Is refusing to accept the pain and disability 'wrong'? Is accepting the limitations and suffering a giving up?

I still do not accept the pain. I write too much, or read too much, or do anything too much that requires me to use my eyes (which is pretty much everything). I notice the pain. I feel it mounting. I say to myself, "it's okay, it's not that bad. I can continue." And continue I do, and them am often actually astounded at the amount of pain there is.

As I read, and write, look through store aisles, sew a hem, merely stand or drive in bright, bright light I fight having to take the codeine.

Since the stimulator 'broke', it often only takes a few minutes into the day before the pain is off and running.

Finding and opening the cereal box, pouring out the cereal, filling the cereal bowl with Cheerios, Total and Shredded Wheat, pouring the milk into the coffee cup and bowl I feel the need for a codeine; to go sit somewhere and hold my eyes stockstill until the pain goes away.

I mention in a church group that it seems wrong to pray for the eye pain to go away, as the touch and worse part of the pain did 13 years ago.

If it was God's Will it would be gone: why pray when the answer has been "No." for so many years.

You do not have to Believe or have Faith. The question remains the same. If the pain has not gone, if no surgery but the first, 30+ years ago, stopped the eye pain, isn't it time to accept it as a reality, a constant, a part of who I am?

Someone, someone very kind and caring, tells me you always have to have hope: you never know what new thing they will come up with that might help. That has always been my hope.

Is it a false hope, a way to keep the life force going, to keep away the horror of reality? I do not know. The stimulator is 100% experimental. It did help, and hopefully will do so again. Fibromyalgia and RSD (CRPS). They used to be thought to be psychological, now they call them real and are developing theories, meds, and therapies.

So what do you do? Do you hang on to what may be false hope - something may be developed at some point in time (or may, one day, turn out to be legitimate hope) or do you accept where you are?

Hmmm, that last sentence was not thought out, just a thought, maybe a Freudian thought.

Maybe the answer is easier then it seems. Maybe, just maybe, the answer is in accepting the here and now as it is, and leaving the future to itself.

Wednesday, November 2, 2011

Celebrating what's left.

I read a post from one of the members of the women in pain awareness group (!/groups/111961795481256/ )and she reminded me of something very important; something I think many of us tend to overlook, even those not in pain. For me, it is a constant that I forget rather then remember.

I have lost a lot. My dreams, my hopes, my life as I once thought it would be.

I sometimes look in the mirror and am surprised. Who is that older women? I am supposed to be 26 still; my hair long and dark, face smooth, eyes sparkling -'bedroom eyes' Bill, my castmate from "HELLO DOLLY" called them; a mouth with the tiny smile that reads expectation and options.

I awaken in the morning and think. What is there to do today? Usually nothing, or maybe an errand or two. Is it a good morning and the eye is not swollen yet, the pain quiescent? Or am I already behind, the pain having the upper hand?

I go to the computer and start reading email. It is too much for my eye. I want to stop but what else is there to do? Who else is there, the writers often unknownst to me but still people with whom I am having a 'conversation'. It is someone, a way out of the alone, and when it is from another person in pain, someone who 'gets' it.

But even that is fraught with the loss. I don't want to have a medical issue in common, much less pain, I want to talk politics and cooking, and theater, and, well, almost anything else.

I am working on my greeting card line to get them ready for an Etsy store. That makes me happy, when I think of a joke or an illustration I can do. I get scared and upset when I take the thought further. What if I can't succeed at this? What if it is too much for my eye - to get items ready to mail out, to address the envelopes or boxes?

My fantasy is that when this is over, because it will be, because the pain will be gone, (I know it is only a fantasy but then you never know.) I will be 26 and have the life still before me I had envisioned when I moved to NYC. I will act, I will sing, I will continue with the friends I made, going out for lunch, watching parades, eating at each other's homes, just 'hangin'.

When I look at it that way there is nothing to celebrate, it is all loss and fear and can'ts.

But I can write the jokes and words for the cards. I can draw the pictures (not good but cartoony enough that they fit). Because of the Miracle I can go outside anytime I want, letting the breeze and leaves, and snow fall on my face, turn my face right into the wind, and not be in pain.

One surgery left so much damage in my neck that I have the 2 clamps and 12 pins holding it up. But, as the orthopedic surgeon told me, "You could have become paralyzed just walking down the street."

But I can walk, and breathe, and my body can do almost everything I want it to do and it can do all it needs to do. I am not as completely alone as it feels - because there is no one to touch and feel right here, right in front of me, but I do have my friend in New York and we talk almost every day, I do have my nephew, we email almost every day. It is more than many have.

I have a roof over my head, I am not destitute. One day I may be living on the edge, because of my financial situation but that is not today. Today it is okay.

So. I have a choice. Is my thinking going to be a broken record and keep repeating: the pain, the pain, the can't, the don't, the fear? Or will it play a new song - yes the pain will be there, it will get worse. I will have to stop; but right now, for this moment, for this few moments, this half hour, this hour, I am okay and it is a good feeling. Hold onto it and maybe even through the pain the celebration of the have will play on.

Friday, October 28, 2011


As I sit in choir, stand behind someone at the cashier's line, let someone get in front of me at a redlight I cannot help but look at their necks.

Almost all are pristine, not a scar to be seen, maybe a line of two of age but nothing...egregious. Not like mine.

The back of my neck has seen a lot of scalpels. In 1980, entering through the nape of my neck, Dr. Hosobuchi tried to cut the trigeminal nerve at it's root. For a few years it took away the spontaneous pains but a lot of the TN remained. Once it completely failed, a few years later - back to the drawing board.

The next surgery was the first dorsal column stimulator implant. It was placed in the same area where Dr. Hosobuchi had been, and a new scar was born. It became infected a few months later. Dr. Barolat removed it but the knifeprint remained and a new one added. The next dorsal column stimulator was placed in the same area, a new scar posted. Then it was removed, another knifeprint heard from.

The back of my neck has a wide ribbon of white where all those hands entered and departed. I hate that I have it. I am jealous when I look at those other necks.

And yet.

And yet a part of me wants it to be seen; hoping that maybe my story reads there and people who see it will have a better idea of what I have been through, what has happened to me. Probably not. Probably more of a 'geesh, will you look at that?" if it is noticed at all.

The other side of that is the hope, ridiculous in it's thought, that a doctor will be walking behind me. He will be close enough to see it. "Miss, Miss." He calls after me. "I saw your scar. I know what you have. I know how to fix it." One of those nonsensical fantasmagorical figments of imagination: the delusion of hope, the killer of the 'this is forever' fear.

We all have so many scars, internal and external. They have so many meanings, a hope here, a hate there, our lives laid out, and played out, in indelible lines.

Tuesday, October 25, 2011

The what-ifs?

I wish I had a magic wand to stop my mind from going to the what-ifs about the problem with my implant.

I try not to think of the options but there is almost none that is a good one, absent it turning out to be nothing, but that is no answer - for I know something is not right.

So. Okay. Something is wrong. What happens next?

I can leave it as is.

That's no good. By going bad it proved it was doing good. I still could not work, the pain still got in the way of using my eye for any long period of time, I still was disabled, but it did give me, 5 maybe 10 minutes longer of eye usage before the nausea from pain set in.

I can have them take it out.

Ugh. It is attached to the covering of my brain and encased in scar tissue (I assume). After 20 years it will be hard to take out (or is it 'off') of my brain. Is there the potential for damage? Who knows?

The first implant, a dorsal column stimulator, worked wonderfully well. All the touch pain was gone. It was marvelous. And then I lost it to an infection.

Dr. Barolat removed it with no damage but 1) it was in my neck and 2) it was removed only after 7 months. It was not really enough time to get attached to me - even though, because it worked, I was very attached to it.

The next one did not work, at all. Was that because it was not in the exact same spot? There was no way to know. If they took this out could they get it back in the exact same place so it would still help? Who knows?

I think I have mentioned that this implant is 100% experimental. I am not sure what amount insurance paid towards the surgery. I believe the hospital picked up some of the cost.

The local neurosurgeon told me he did not think I could have it replaced. Insurance would never pay for it because it is experimental.

There are so many ways this could turn out. It appears almost none of them are good outcomes.

The best that could happen is that they decide there is nothing wrong with it - but because of the horrid sensation that started this course of turning it down and down and down, to now being on only 1 minute per hour at the lowest level of stimulation, I am afraid I would remain afraid to turn it up higher.

"Don't anticipate." "Be in the here and now." I know that is the best way to deal with this. I just wish my mind would heed that advice.

Thursday, October 20, 2011

Bizarroworld. (Saw the company rep.)

I went to the neurosurgeon's office yesterday for the appointment, mostly to meet with the representative from the company that makes the implant.

Right now I do not feel like writing much about it and, truth to tell, there is not much to say, at least for now. It is also hard to wrote about because it requires a lot of explanation for many of the steps that were taken.

It appears that something is wrong with the unit but the information that the main computer is giving does not make sense.

It looks like my company rep will have to contact an engineer at the company to see if they can explain what right now is making no sense. (On the one hand I am having the errant sensations from the implant but on the other hand the main computer is indicating that there is a break in a wire somewhere which means I should not be feeling any stimulation at all.).

It is a bizarreness that has to wait for the end of this chapter to be written.


Tuesday, October 18, 2011

Fear and hope.

Tomorrow I go to the neurosurg about my stimulator.

As I wrote a few weeks back I had to turn down the strength level of my brain implant because of a 'tic', one I always assumed was from my anaesthesia dolorosa (phantom pain).

It started where it usually did, at the tip of my left nostril but then it grew and grew, turning into tingling and spider webby, going up to my scalp and down to my chin, and harsh, very, very harsh.

I have it on now at the lowest level of stimulation possible. I have changed the amount of time it comes on so it now is on half a minute every 2 hours, or 6 minutes per day. Since I changed it to this almost completely off level, I have had two small, very small, 'tics" - starting at the tip of my nostril then spreading quickly out - up towards my eye and down into my chin area. Could I really still be feeling something? It is still on so I guess the answer is "yes."

The upside is that having it almost off has proven it was helping. That is the good news/bad news.

Good because I know that it was, and is worth, keeping in and on.
Bad because to figure out what is wrong with it they have to turn it back up to a much higher level in order to have the computer 'read' it to find out what is wrong. That scares the heck out of me.

I am very afraid that the feeling that made me turn it down in the first place will come back with an even greater kick because it has been turned down so low for a relatively long period of time.

I have the other big worry. What the heck is wrong?

Is it merely the battery that was replaced a few months back? That would be good because fixing it is relatively easy. Is it the wires or the computer chips? My stomach clutches and my mouth goes dry thinking about that.

If it is the stimulator it would mean taking it out - pulling off the computer chip that is now encased in scar tissue and very intimate with the covering of my brain, pulling out the wires that have gotten very comfortably ensconced in their own scar tissue cocoon. (And, hopefully replacing it.) One doc has said he doubts the insurance would cover it if it needed to be replaced (since it is completely experimental).

My current neurosurgeon first said he would not be willing to fix it but then said, while he was replacing the battery, he would do it, if that was ever necessary.

I figure maybe you should trust a doctor at their first word.

The surgeon who put it in is in Colorado. I do not have the airfare nor a catsitter (if he would be willing to do it), And maybe he would not want to do it again anyway.

So, the appointment is tomorrow. I know something is not right. It is a long way from knowing that to seeing myself on a plane to Colorado; but it is very hard to keep my mind from taking the trip. I'll let you know what happens.

Thursday, October 13, 2011

Defense to the offensive.

I thought it might be interesting to put together a list of chronic pain disorders or conditions that result in chronic intractable pain as one of the signs/symptoms.

I write this in response to a commenter (hard to tell if all the comments were from one person using aliases or more than one person.) It is the same old story of defending the reality of chronic pain. People believe when you have other invisible illnesses, like cancer or diabetes. This should be no different but for some it is and that is a shame, for them and for anyone in their lives who suffer with/from chronic pain disorder.

Please feel free to add others.

Rheumatoid Arthritis
CRSP, complex regional pain syndrome
Back problems and injuries that cannot be fixed
Arthritis (which can be very severe)
Multiple sclerosis
Anaesthesia dolorosa (phantom pain)
Trigeminal neuralgia and other neuralgias of the cranial nerves
Post cancer pain.
Failed surgeries that result in neuropathies that cannot be cured.

It was true for a shot, it is true for the pain.

I used to be phobic about needles. Even the idea of getting one turned me into a coward.

Many, many years ago I worked in the emergency room at my local hospital. One day I mentioned to one of the nurses that I had stepped on a rusty nail the day before. "Carol, did you get a tetanus shot?" "No. No, I don't need one." Yes I did, she decided, and told me to wait in the exam room and she would be back with a shot.

I waited: thinking about the shot, imagining the shot, feeling the shot. My agitation increased. By the time she came back to the room the little injector she held looked to me to be about 9 feet long, with a needle as sharp as an eagle's beak and three times as long.

My quivering did not go unnoticed. "You don't have to be afraid. Look, it is just a short needle. It won't hurt that much." I scooched a little further back onto the guerney. "Oh yes it will. Oh. Yes. It will."

"I have a little trick so it won't hurt." Magic. I liked that. Maybe the shot would magically turn into a pill.

The trick required me to let her hurt me before she gave me the shot. Uh, really?

"Carol, I'm going to hit you in the arm right where the needle will go. I'll do it right before I give you the shot. I promise you won't the shot." Oh c'mon. Fear of the shot overcame fear of being hit. "You can close your eyes if that helps." I always want to see what is being done to me. Eyes open, I waited for her to move back, take a steady solid stance and swing out and into my arm.

My eyes followed her hand. Up it came. She turned it towards my arm. Uh oh. Tighten up. Here it comes. And I felt a tiny slap, a sting, a mosquito lighting on my arm and biting gently. And before I could pull away the needle hit my arm, entered my flesh, and was quickly removed. And it did not hurt, at all. Susan saw my slight smile. "It didn't hurt because you can't feel 2 sensations at once. You felt the sting, so you couldn't feel the shot." Wow. I gotta remember this.

I did the other day after I turned off the internet and my computer. I wanted to stay online: reading, answering emails, checking FB etc. but the pain had been growing as I fought to ignore it. I kept convincing myself, 'just a minute or two more. You can do it'. Finally I reached the point I usually do; when the eye, when the pain, becomes the dictator. "Get off the computer. Get off right this second."

The pain is bad but it is... okay. The kind of okay where you think if I just atop for a little bit, a few minutes or so, it will go away.

But it does not. As soon as I turn the computer off I feel pain in my eye and lids. It is at the slippery slope of nausea, any movement of my eyes making it worse. The few minutes I thought I would need becomes a half an hour, an hour. I sit trying my best not to move the eyes at all, the stillness of my body not stilling my sight. I move and my eyes move too.

Almost everything makes the pain worse. I lie on the bed. Eyes open I stare at a dot on the wall, or the ceiling, and force myself to not look even a tiny little millimeter to the left or the right. I stay this way as long as I can, hoping it will be enough to bring the pain back down to at least a manageable level.

Sooner or later, usually a lot later, I am back to my stable state, the pain minimal as long as I keep the eyes somewhat quiet. (The pain is the left eye but movinig the right one brings the left eye along with it, there is no way to use, and move, only the right eye. Would that there were, then I would be fine.)

I think about it. Why is it so much worse once I have stopped using the computer? It makes no sense. And then I recall Susan and the shot. The computer is the slap. As long as I am doing something to keep my mind occupied I do not feel the pain as much. My mind cannot feel the two things simultaneously. It cannot take in the thoughts and information I am processing and acknowledge the true level of the pain simultaneously.

It is one of those aha! moments.

Will I learn from it? Will I stop doing the ocmputer or something else I enjoy or need to do or get done before the pain gets to the level where I have to stop - a level I know is always less than the true level? I did not do it with this post, but that does not mean the answer is never.

It is a lesson for most of us with chronic pain. When our body first starts saying "stop" it needs to be heard. When we refuse to listen the cost is much much higher in the end.

Monday, October 10, 2011

What am I?

I was at the Occupy Philadelphia rally last week. A reporter, Sara, and I talked, and she decided she would interview me. (She was from CNN. I don't know if the interview was shown or not.)

The camerawoman turned on the camera and Sara took out her reporter's notebook.

"What is your name?" I answered that one easily.

Then the question that always stumps me. (I think I have written about this before, either here or at the old Women In Pain Awareness site so please bear with me if I am repeating myself somewhat. Age, you know, is my joke but it is more what my friend always says of me, "You never learn your lesson.")

"What do you do?"

I thought for a second. Did my usual hemming and hawing dance, more inside my head then vocally, I hope.

Then I said "I am disabled."

I hate saying that. Those of us with pain or other invisible disabilities fear the look that we sometimes get, the one that says 'Oh yeah, sure, I see how disabled you are. (In fact there have been 2 comments recently under the post Pain vs. Cancer. The commenter lets me know very loudly how untrue chronic pain is as a disease and how we are all nothing but drug users, lazy, etc. - Please feel free to reply to him.) Sara had no response to that, nor did I see disbelief in her face (but she is a reporter, trained not to show reactions.)

I stayed at the rally as long as I could then took the train to get back to my house. As I rode along, I thought about the interview. And emotionally kicked myself.

An online friend and fellow pain sufferer said, a long time ago, you (meaning me and disabled others in general) are much more than your disability. You are mothers and daughters, writers and singers, students and teachers. Disability is a small part of who you are as a person.

She was right. I should have said I was an author, or hypnotherapist, or teacher.

I am published and even though I rarely see clients or teach, I am and do both of those as well.

My life revolves around the things I cannot do. The things I can do fade in the background.

Maybe by letting them fade I make myself less, not only to the world but to myself. And maybe that is one of the biggest disservices I do to me.

Tuesday, October 4, 2011

We caused this. Really?

I had a strange conversation a few months back with a friend who believes in reincarnation. "No matter how awful our situations in life," he said, "we arranged it before 'we came to earth".

It does not matter if you believe in reincarnation, karma, past lives, or nothing like that, the chances are good you have heard someone say 'Well. You brought this on yourself." Sometimes they explain further - your diet, your attitude, your...self.

Is chronic debilitating pain something we bring on ourselves? Is it payment for something we might have done in this life or another? Is it payback because we have not taken proper care of ourselves?

You rarely hear people being blamed for having cancer, maybe for smoking or staying in the sun, but once they have it it is usually something not brought to bear on them as they go through treatments and procedures. And yet, many of us with CP do hear that; when the pain starts and then stays, and stays, and stays, after diagnosis, after surgeries, while recuperating etc. What is it about CP that makes it fair game for their blame game?

Others blame us. We blame ourselves. It had to be something I did. If we could just find the explanation for why this happened, for why it happened to me.

Pain is so unexplanable, even by many in the medical profession, that for many of us this question seems to be at the core in accepting the pain and its staying power. I wonder if we do not tend to ask this question more often than those with other issues, even cancer, a very understandable 'why me' disease.

At the end of the day, or even the beginning, though, no matter what your beliefs, this is not something we ordained for ourselves. This is not something we set into motion. And never, ever, let someone convince you that you did.

Friday, September 30, 2011

Oops. No it's not from the pain..

I had been noticing a scab on my forehead for months, maybe longer. I had been told many years ago that the skin on the left side of my face would probably breakdown at some point. I was afraid the scab was a sign of that so I just kept seeing it and pretending it was nothing.

I also hoped it would be noticed during one of my eye exams since it was close to my eye. It never was and oone day I finally decided to mention it. As soon as she saw it she said "That has to be biopsied. It's a lesion but I doubt it's malignant."

It was cancer, the least of all cancers (to my mind), a basal cell carcinoma. A little office surgery was all that was needed. (Looks like it is back or maybe it was not completely removed the first time so I have to be seen again but still, if you have to have a cancer this is the most minimal of all.)

I did nothing for almost two years because I relied on the fact that it was in the pained area. Other than the breaking down of the skin: and it never got bigger or looked worse so how bad could it be even if it was that?, what else could go wrong there? Nothing. So I thought.

I think of this now because one of the sensations I kept getting, a very, very strong itch feeling at the base of my nose, I blamed on the anesthesia dolorosa.

When these itches came, hard and strong, I took an extra pill or two of my pain control medication (not the codeine but an anticonvulsant also used for pain control.) It seemed to help - but then they disappear on their own, often quickly, and reappear at their own will, sometimes just as fast, sometimes hanging on for seconds and minutes. So what stops them? The medication, or just because they want to? I believed the answer was either/or.

And then the problems with my stimulator started. As I turned down the level of stimulation, the 'tics' still came but when they did they were less fierce. And the lower the level of stimulation, the lower the level of sensation of these itches.

I'll be darned. The implant is causing these, not the phantom pain. It never occurred to me that it could be anything but the damage already there.

Moral of the story: We have to remember that despite our pain we are still prone to all the ills of the world. We cannot let folly (in my case), not wanting to see more doctors, fear of other possible procedures, etc. deter us.

For me a lesson needing to be repeated and hard (hopefully this time)learned.

Saturday, September 24, 2011

Magnification. (is it always?)

When I teach relaxation and antianxiety techniques I like to include what cognitive therapy calls 'errors in thinking'. One error is named magnification and minimization.

The usual example I give for this is of a soprano who goes hits a bad high C in a performance. She then makes it so big in her mind that she thinks and expects she will miss that note in each and every performance she does, soon even refusing jobs, fearful of repeating what is now in her mind a gigantic error that will forever repeat.

In everyday life it is important to remember and keep in perspective those mistakes we make, those things that we can use as a learning experience.
What about when you have constant intractable pain?

"I couldn't do it yesterday, so I will never be able to do it." Is that magnifying or reality?

For some with pain it is possible that yesterday's 'not' is possibly today's 'can' but does not mean it is tomorrow's 'can'. Accepting the erratic nature of your pain is an important component of living with pain.

Often the problem is with those around us. As I have written before my father would say "I saw you read yesterday so I know you can read." I tried to explain that the eye pain does not stop me from reading at all, just for any extended period of time. He did not want to accept that. His magnification, 'she does, so I know she can.' was on him. I have no control over what he decided to believe. None of us can change someone's belief when they want to hold onto it steadfastly.

The converse, I could yesterday, but I cannot today, is the same concept.

What about the 'I could not yesterday, I can not today, and I cannot tomorrow'?

For me that is where minimalization comes in, or more to the truth, refusal to accept the limitations of the pain.

It is different because my pain is in my eye and the use of them (since when you move one the other automatically comes along).

It is possible for someone with bodypain (below the neck) to say 'my pain never lets me bend down', for instance, 'so I cannot reach my shoes'. That would be an everyday truism for them.

But I cannot quantify the pain. Did I read exactly the same amount of time, the exact same amount of words, the exact same number of breaks between reading, the same width length of writing (the smaller, the less you have to use your eyes) yesterday and today?

The pain is worse, I think, since I had to turn down the implant stimulation level. But is it? It seems the time I can use my eyes is lessened - but I was okay at choir this week. Wasn't I?

Then I think but I stopped looking at the music and listened instead to hear the notes and timing. I still had to take the codeine but I was better, no wait. Maybe I wasn't. I just can't tell.

I have lived the last 30+ years the same way. Even after all this time I still have the doubts it will go away and the hope that it will end and I will be fine and back in the world 100%. I magnify the hope, mimimize the doubt.

If I did the opposite, if I accepted the reality, would that turn of events from one extreme to the other be a help to me? Is my 'error in thinking' more a way of keeping hope alive than accepting truth?

As those in chronic pain we do not often fit into a lot of the categories into which much of the rest of the world fits. Could 'erroneous' thinking be another mismatch?

Wednesday, September 21, 2011

Time out-ish

I have tried to write at least every 2 -3 days but I am finding I have been using the computer less since the trouble with the implant.

I hope to get some posts out and hope you will bear with me.

Unfortunately I cannot get an appointment to see the neurosurgeon until the middle of next month.

As with many of you with other pain disorders some days I am able to do more or get more done of what I meant to get done, before other things get in the way. My intention is to get to posting before I take up the eye time available to me with other 'stuff' on the internet.

I love to google and am a fiend for the political stories and news. I am going to work at not taking up all my eye time with them so that I have time to post here.

While I am slowing down please don't give up on me or the blog. I'm still here and checking to see if you are. ((*_*))

Saturday, September 17, 2011

Who's there?

When I hear others talk about how they long for time alone, their families are too demanding, work too boring or intensive, I am jealous; but not for reasons other than the yearning for family too close to me, too involved in my life, too...there (although I am sure that wears thin very quickly ((*_*)) ). Or work, too tedious, too demanding, too much work.

I had to change a lightbulb. Normally that is an easy task but for someone short and the ceiling high, it was difficult, something nice to have a hubby around for. But it was something doable.

Other house problems can be daunting, when left to your own devices, but I get a lot of it done. The rest I leave, hoping the house leprechauns will come in during the night and do it for me. (they haven't yet but here's hoping.)

This is morbid - but I do worry. What if something happens to me? No one will know for days.

Betty, from church, has made it her job to check for me each Sunday. If I miss 2 weeks in a row she vows she will call to check on me. And a few weeks back she did. Someone noticing my absence and being concerned is not something I have known for a very long time (even when my parents were alive it was rare, a story for another time. Maybe.). It was so kind and a wonderful feeling to think that someone cared enough to worry.

At any rate, what brought me to writing this post today was finding an alone fear of which I had no awareness.

I had to turn down the stimulation in my implant when, for some reason it 'exploded' for lack of a better term, setting off an extremely unpleasant feeling, definitely the sensation of the stimulation, x 100.,

The sensation was so large, the fear and surprise of it so great, it took a few seconds, maybe more, before my mind found a place of sensibility and screamed at me, "Turn it down!"

I did and I was quickly fine. Everyday or so since I have turned down the level of stimulation further. As I got down to 0.05, almost off completely, I became aware I had been turning off the computer (my major form of eye usage) and leaving it off instead of coming back to it later.

The pain was getting worse.

It was never a problem for me to change the rate, amount of stimulation, or the polarities of the implant. Until now. I walked into my bedroom to get the programmer, intending to turn the level up. I stopped in midstep. I could not go further. I was too afraid to even consider changing it.

I talked with the company representative about coming into the office to have them check it out. I realized as I talked to her that my fear was based on the aloneness, of the having no one here.

What if I turned it up and I got that horrid sensation again? How would I turn it off quickly? Could I? Would the fear get in my way? I was afraid because there was no one I had in the house, or I could even ask, to be here in case I needed a fast hand to turn the machine off.

Of all the reasons why the separateness of my life has been so hurtful, this aspect of being alone had ever happened before. After all, I went through the last 9 brain surgeries alone. What could be more fearsome than that?

Now I know the answer.

Wednesday, September 14, 2011

What color pain?.

Today I read another post in a chronic pain support group about a family member not believing the person was in pain. It is too common a cry, "My (family, spouse, friends, colleagues) do not believe me. You don't look like you're in pain, they keep saying."

My father used to say to me "I don't know why you can't work. I have seen you read, so I know you can."

I repeatedly told him "I can read, it is not that I can't. It is that use of my eyes to read or for any other sustained use for more than 15 - 20 minutes causes severe pain so I have to stop. That is why I can't work."

How could I prove that I had the pain? How could I prove that the eye pain forced me to stop using my eyes?

I could not. Back pain, muscle pain, full body pain. How do you 'prove' that. Move a box one day and the next when you say "I can't." you are suspect. Hold down a job. Your pain cannot be so overwhelming then, can it?

For some reason I was reminded of when my father died. The Rabbi gave each of us a black armband to wear. We were to keep it on for a month. I was the only one to wear it the entire time.

I lived in NYC. When I walked through the jewelry district, home to many conservative and orthodox jews, I expected my mourning to be acknowledged, the armband the symbol that brought us together; for just a moment in time.

No one said a word, or lowered their head in acknowledgement. I wanted someone, anyone, to let me feel a part of something bigger, a community. It did not happen. On the 31st day I took it off and flung it into the trash.

We need to be a part of something bigger than ourselves. We need to have our pain acknowledged.

It is pink time again. People with cancer are embraced by the society, especially if it is breast cancer you have. It occurs to me that there is also a leftout if it is a cancer elsewhere in your body, or for that matter, if you are a man with breast cancer.

There is no color for pain. There are too many conditions that are the root cause of it. Fund research for say, lupus, and the pain of trigeminal neuralgia is left in the sand. Fund fibromyalgia studies and those with CRPS are out in the cold. Fund breast or lung cancer and there is a good chance the results can be used for those who have pancreatic or liver cancer.

Those of us in pain mourn the lives that pain has taken from us. The color black is already taken for all the other losses we have in life. Is there a color for us to appropriate? If we wore the ribbon on our collars would we stop hearing "I don't believe you are in pain."?

Monday, September 12, 2011

Why did I keep letting that person back into my life?

I had a friend, who, every few years would find a reason to get mad at me. She would ratchet up the level of her anger and then suddenly announce "This friendship is over!" 2- 4 months later she would call me. "I went to the store the other day and bought a bunch of bananas." she would say or some other such triviality, as though there had been no breach.

Each time I was torn. It was wrong of her to behave as she had but my need for friendship overrode my commonsense. Each time I replied "Oh, were they ripe?" and continued the pretense. Then we would fall back into our old relationship until the next time she decided it was time to end it.

The last time she did this, a few years back, I realized I had to take her at her word. When she called me at the appointed time, 2 - 4 months later, I was cool to her. She called 2 more times before realizing I had agreed with her, the friendship was over.

It was a sad thing. We had been friends for about 15 years but sometimes reality needs to be acknowledged. The friendship had come to an end.

How often have we stayed with doctors, medications or agreed to continiuing therapies even though we knew they had proven not to be what we needed?

When I lived in NYC I started seeing a neurologist who did not always 'believe' in my pain and behaved in ways that seemed a little 'off' (to me). My Philadelphia neuroophthalmologist suggested I have a doctor in NY, and I knew no other one, so I felt stuck with this man. I stayed with him long past the time it was healthy for me to do so.

I get 'tics' from my anaesthesia dolorosa (phantom pain). Unlike my trigeminal neuralgia tics these were severe itching sensations, directly under my nose.

About a week ago I got one that was horrendous: itching, tingling, pulsating almost, just overwhelming and unbearable. Very few times have they been that bad. This one was worse because within a few seconds the whole side of my face was involved and then the side of my scalp as well. It was terrifying, the sensation 100fold the way the stimulation, which I rarely feel, feels.

Using the computer that came with the implant I made some changes.

The implant had been placed in 1991. Although now and again I would change the polarities (the plus and minus - like in a battery) and the amplitude (how much stimulation I got) I had never turned it off and never really played with it. (I have the main computer which most patients do not so I could do a lot more changes on my own.) This last pain forced me to reconsider how I used the implant.

I turned the stimulation level down and still got some of the tics. I turned it down further and got less and the intensity was less. I have it almost off and am getting less still and the sensation less.

It occurs to me that I have always been afraid to turn it off. I keep going back to it, to tweak and fiddle with, in hopes that the pain will be gone, or lessened, so I can use my eyes more (and work, always work - that hope has never left me). But, if I turn it off, that is it. There is no other therapy left to try, I must unconsciously think, as if turning it off means I have closed off all possibility of using it again. Of course that is not true. All I would have to do it is turn it back on.

The friend, the doc, the implant. How many times has the truth stared me in the face - do not go back, find another doc, turn it off - but it is more familiar to continue with what I know?

How often do we let fear stop us from doing what we know is the right thing to do?

How often do we welcome someone or something into our life, or back into our lives, because it is easier to do than looking the unknown in the face and saying, 'The heck with you fear'.

Thursday, September 8, 2011

Understanding pain and understanding pain

I know what it is like to have constant, unremitting, horrendous pain. I always thought that gave me a better understanding into someone else's pain. I sympathize, empathize and understand the words but do I really 'get' what someone else is feeling when they tell me about their pain?

My pain is in my eye, and was in my face. I always knew how lucky I was that it did not involve my body (that is- below my neck) so that, even though I was virtually housebound for years, because of the weather and the pain, I knew my body was able to do most of what I wanted it to do.

But recently it was not.

I developed a pain behind my knee which then spread to the whole leg. I waited about 2 months expecting it to get better. Instead it got worse. Walking was painful, the stairs to our second floor a major impediment. To get up to the bedroom I crawled up the stairs. Going back down I used my rump and scooted down, step after step.

Finally I saw a doctor. He thought it might be sciatica, something I never knew could affect the entire leg. He ordered x-rays and told me to come back in 2 weeks. The pain remained. It was a new disability. Even though I knew it was temporary (I assumed) it gave me an entirely new perspective on what it means to be disabled.

When I responded to people in my Women In Pain Awareness Group, and other support groups, I would say "I understand the pain you are going through." That was a lie. Not an intentional one but the truth was, I did not understand.

"I know how terrible it is", I wrote "to not be able to do what you want to do when you want to do it, or not be able to do it at all." I had no idea that my 'understanding' was only intellectual, not visceral.

The problem with my leg resolved with a cortisone shot. The pain and problems getting around were nothing compared to what happens when you have fibromyalgia, CRPS (complex regional pain syndrome), Lupus, or other bodywide pain disorders. It was only a short time and only my leg but I now have a better understanding of what they were talking about.

Many of us have had the experience of someone doubting our story of pain or not believing pain can really be 'that' bad.

It is hard to 'get it' when you don't walk in another person's shoes. I believed I did but until the leg somewhat incapacitated me I truly did not 'get' what it meant to have your body betray you and stop you in your tracks.

I empathized but I did not see at the deeper, comprehending level what their pain was doing to them. If I did not get it, and I know the life stealing ability of constant pain, how about others who do not know this level of pain?

I wonder if it is a concept so foreign to most people that it is more understandable when others do not understand than when they do.

Monday, September 5, 2011

Forgiving and Forgetting.

I often think about the 'what if's' of my life.

What if I had taken graduate work in psychology and become a psychologist? What if I stayed in the Physician Assistant program at Hahnemann and become a P.A.? What if I had never gotten to do the dinner theater which led me to the apartment in NYC? And had I not left the PA program or instead gone to graduate school would I ever have auditioned for anything? And would my life be different had I done other than what I ended up doing? What if, what if, what if?

No matter what, physically it always ends up in the same place. The trigeminal neuralgia was part of my birth defect. It was ready to be triggered no matter what I was doing. A psychologist, A P.A., a successful actress, no matter what the road it all leads to the same dead end.

But what about the people who knowingly hurt me, changed my life in ways that effect me each and everyday, from the minute I rise until I curl up under the covers at night?

My anger towards them waxes and wanes. Sometimes, when my eye is behaving itself and the pain is not too bad, or the bills have not come due they are not in the forefront of my mind.

I think some of the anger that rises unbidden at a situation having nothing to do with any of it, the old 'kick the dog syndrome', is related to it even though it may not seem that way at the moment of my anger.

I think of people I see on the news who have been put in a wheelchair by a drunken driver or left severely damaged by a shooter just driving by, or mugged and worst and left physically and emotionally scarred and damaged. I listen to them as they say "I have forgiven them."

I wonder aloud, for the umpteenth time, why can they do it but I cannot?

I think some of it is because of my aloneness. You need the support of others to help you. Not only get through it but understand it, accept and get past it - to figure out the way to go forward. If another is there to help you do whatever it is you can no longer do, to accept the unacceptable, maybe the anger at the person who caused it is not quite as necessary or consuming.

Part of the anger for me is also because they got away with what they did to me. But what about the hit and run driver or the criminal who was never found? How does their victim get past it? And yet it seems they often do.

I remember a few years back, I was telling some people about the things my siblings and parents said and did that have hurt me so deeply. "I think I forgive them but I have to make very sure I never forget."

"That's an awful thing to say. You won't forget? Then there is no forgiveness. That makes no sense you will do the one but not the other." I was told.

I think it makes a lot of sense.

The forgiving is so very important. They may never 1) know or care what they did and 2) not know or care that you forgive them but it is for your own personal well-being that you forgive. It is the only way to get past it.

Forgetting is a bad idea. Forget what someone did and you often let them do it again. You must never forget, it is to your own detriment if you do.
I find when I forget I am only too willing not only to trust them but to put my trust in others whose bahavior is very similar to the ones who have hurt me. In forgetting and giving trust where it does not belong, Bingo, here comes the same hurt. And this time my forgetting gave them the permission to do it.

When I have to go to the eye hospital, when I have to take another, or 2 or 3 pain pills, when I struggle to pay my bills, when I want to work but cannot, I think of the people that caused much of this. I do not forget them. I gave them my trust and they abused it. Do I forgive them? It is at these times that even when I thought I had I realize I have not.

Those who are injured by an intoxicated driver or evil person who commits a crime against them, maybe it is the lack of a personal relationship that allows the forgiveness. Those who hurt me lied directly to my face, knowing they were lying, knowing the devastation they were about to cause. But, as I write that last sentence, I am reminded of newsstories about someone whose life has been forever changed for the worst by a family member or friend and they have still forgiven them.

What if, what if?

Maybe my question needs to be what if I could forgive them, and better yet, how do I forgive them. And within that question is there a part of me that thinks - it is my fault, I let them get away with doing this to me.

Maybe, just maybe, a big part of the question is: how do I forgive myself?

Friday, September 2, 2011

Ben's friends is no friend of mine - follow up. or How to evade responsibility.

I am so saddened that the owner of a support group behaves in a way no different than what many of us have experienced with friends, family, colleagues, etc.

I had written earlier about Ben' Friends group, living with atypical trigeminal neuralgia.

I received a note saying I had been suspended for spam they could not prove and harassment, for which they had no explanation other than to say if I replied to an email from one of the administrators it would be considered harassment.

I sent copies of the email and my replies to Ben so he would be aware of what was happening. He emailed me back asking that we speak by phone.

During the conversation I reiterated that I asked for proof of their allegations: they had none. I also told him I had owned a ning group such as his. When I suspended someone for spam I sent out a note to the group telling them someone had been removed for that reason. The same can be done if someone is removed erroneously.

Accusing someone of spamming and harassment is a major 'crime' on the internet. They needed to apologize, or correct their lie, by posting a note that they had wrongly suspended a member for those reasons. They did not even need to use my name.

This was the reply I received from Ben this morning.

It is a typical response to someone who truly does not 'get' it.

Instead of acknowledging they were wrong, instead of issuing an apology which he said they felt would be "inappropriate" with this "issue" he seemed to put the the blame for this fandango on me, writing "I know you have dealt with a lot in your life, medically," and wished me the best of luck.

My medical experiences had nothing to do with being wrongly accused.

It is sad when moderators, when shown to be wrong, when proven to put out bad information, are rewarded but the whistleblower is shown the door.

Support groups are good and necessary but no group is good, or safe, if the ones on whom members rely are so glued to their wrong positions that they refuse to acknowledge their errors.

Thursday, September 1, 2011

Gender bias is alive and well when it comes to women in pain.

Below is the text of the Pa. senate resolution declaring September 2011 as Women In Pain Awareess Month.

Bill Text: PA Senate Resolution 144 - 2011-2012 Regular Session

Session of





Designating the month of September 2011 as "Women in Pain
Awareness Month" in Pennsylvania to recognize the need to
raise awareness concerning gender disparity in pain
assessment and treatment.

WHEREAS, Research indicates that differences in men and women
exist in the experience of pain, with women generally
experiencing more recurrent pain, more severe pain and longer-
lasting pain than men; and
WHEREAS, Women have a higher prevalence than men of chronic
pain syndromes and diseases associated with chronic pain, such
as fibromyalgia, reflex sympathetic dystrophy and osteoarthritis
WHEREAS, Although women and men both have strong natural
pain-killing systems, these systems operate differently as the
presence of estrogen lowers an individual's threshold for pain
while testosterone elevates an individual's tolerance for pain;
WHEREAS, A 2001 study in the Journal of Law, Medicine, and
Ethics found that women's pain reports are taken less seriously
than those of men and that women receive less aggressive
treatment than men for their pain; and
WHEREAS, According to the National Institutes of Health, pain
is the most common reason Americans access the health care
system and more than 76.5 million Americans suffer from pain,
both chronic and acute, which increases health care costs,
estimated at $100 billion annually in health care expenses, lost
income and lost productivity; and

WHEREAS, Because women respond differently than men to many
their pain is often more all-encompassing and the level of
disability is greater; and
WHEREAS, The difference in the treatment of women in pain, as
compared to that of men, is more than a personal or gender
issue; it is a societal issue; and
WHEREAS, The Women in Pain Awareness Group was founded in
2010 to increase awareness of the gender disparity women
experience worldwide in the assessment and treatment of their
pain; and
WHEREAS, The Women in Pain Awareness Group, along with
Persons With Pain International, believes empowering women to be
better consumers for their pain management care, sensitizing
health care professionals to gender pain disparities and
enlightening public policymakers about pain as a major health
issue will improve life outcomes for all women in pain;
therefore be it
RESOLVED, That the Senate designate the month of September
2011 as "Women in Pain Awareness Month" in Pennsylvania; and be
it further
RESOLVED, That the Senate draw public attention to the
important need for women to have their pain managed effectively
and without bias through self-empowerment, public awareness,
health care professional education and legislative advocacy.

Tuesday, August 30, 2011

Abnormality is our normal, or Psychiatry tunes out our reality.

Before the mini-lobotomy that Dr. William Sweet tried to talk me into, "You will still have the pain, you just won't care that you do." he had me evaluated mentally and intellectually.

One of the tests used was the MMPI or Minnesota Multiphasic Personality Inventory*.

A number of these questions cannot be answered the same way by those without pain vs those with chronic intractable pain.

Many docs, psychologists, rehabilitationists and counselors use this test. See how you feel about it. For readers without pain I put the reasonings below the statements for which you had to choose True or False.

"I wake up fresh and rested most mornings.
My daily life is full of things that keep me interested.
I am about as able to work as I ever was.
I work under a great deal of tension.
(Trying to get the work done before the pain becomes too great to continue on.)
I am sure I get a raw deal from life.
(I am in constant chronic intractable pain. What else is it if not a 'raw deal'?)
I am very seldom bothered by constipation.
(If you are takiing narcotics (and some other meds) this is a known side effect.)
I find it hard to keep my mind on a task or job.
(Pain. Meds.)
I am a very sociable person.
(see above.)
Parts of my body often have feelings like burning, tingling, crawling, or like "going to sleep".
(This defines some of the sensations of tn as well as some other pain disorders.)
At times I have very much wanted to leave home.
(Trigeminal neuralgia forces you to stay in much of the time as does many of the pain syndromes. I was virtually housebound for over 10 years, going out only to the bank, grocery, and doctor appointments.)
Much of the time, my head seems to hurt all over.
I am in just as good physical health as most of my friends.
I prefer to pass by school friends, or people I know but have not seen for a long time, unless they speak to me first.
(Many of us do not want to have to deal with the questions of 'what have you been doing.' For me, I did not want to have to answer the additional questions, or deal with the pitying looks, about the facial paralysis.)
I wish I could be as happy as others seem to be.
(We are in pain. Most of us are unhappy about that, and what it has done to our lives.)
Most of the time I feel blue.
(We are in pain. see above.)
I usually feel that life is worthwhile.
(Some of us do not. I was advised at one point, by doctors, including a psychiatrist, that 'rational suicide was acceptable in my case.)
Often I feel as if there is a tight band around my head.
(For trigeminal neuralgia, at least half our heads, unless you have bilateral.)
My speech is the same as always (not faster or slower, no slurring or hoarseness).
(Not once we start on the anticonvulsants, opiates, and other medications prescribed for constant chronic pain.)
My table manners are not quite as good at home as when I am out in company.
(For me, it is hard to eat because of the paralysis and loss of sensation in my mouth. For others, opening their mouths is painful so eating is difficult. At home I can enjoy my food more and worry later about what has fallen out of my mouth. I sure cannot do that when eating out.)
I know who is responsible for most of my troubles.
(Dr. Martinez caused the numbness where there had previously been none.
Dr. Jannetta paralyzed my face. Dr. Wiulson said there was too much scar tissue from Dr. Jannetta's surgery to do what he wanted. My 2 lawyers left me high and dry.).
I believe that my home life is as pleasant as that of most people I know.
I certainly feel useless at times.
The top of my head sometimes feels tender.
(Hello. Did someone say trigeminal neuralgia?)
I do not tire quickly.
My memory seems to be all right.
(Pain and pain medications change this for many of us; from peppy or energetic to zonked and and good memory to fuzzy, cloudy, zonked.)
I can read a long without tiring my eyes.
(This is more specific for those like me whose trigeminal neuralgia effected their eye usage.)
My hands have not become clumsy or awkward.
(This is an issue for many with pain, such as arthritis, etc. The medications can also cause this.)
I have had no difficulty in keeping my balance while walking.
(Again the meds.)
I enjoy many different kinds of play and recreation.
(The pain stops that.)
I frequently find myself worrying about something.
(The next surgery, or that there is no more surgery. The next drug or there is no drug. The next time the pain attacks.)
I have few or no pains. (Obvious)
I have difficulty in starting to do things.
(Meds and pain.)
It does not bother me that I am not better looking.
(This is more specifgic for me and others whose pain/treatments for the pain caused changes to their looks.)
I have numbness in one or more places on my skin.
I have often felt that strangers were looking at me critically.
(Again the paralysis. Others with pain often tell stories of using the handicapped spots (with the appropriate plate or placard)and people yelling at them that they were not disabled and "How dare you park there? -this also happened to me. Because pain is invisible we also get looked at critically by those who refuse to believe that we have pain or cannot do something that we say we cannot do because of the pain.)
Life is a strain for me much of the time.
My parents and family find more fault with me than they should.
(I have heard way too many stories similar to mine where nasty things are said because family refuses to accept the pain/disability.)
I have never been paralyzed or had any unusual weakness of any of my muscles.
Most of the time I wish I were dead.
(Too many of us have expressed this wish, whether an active wish or inactive. Only those who live with constant chronic pain can really understand (and those who have devoted and accepting family) why death is not is not the worst thing that can happen.)
I forget right away what people say to me.
(Again meds but also sometimes the pain is so loud nothing else can get through.)
I usually have to stop and think before I act, even in small matters.
(Meds, Pain.)
Often I cross the street in order not to meet someone I see.
(When the pain is bad it is hard to be a "hail fellow well met.")
I often feel as if things are not real.
(Narcotics will do that to you.)
I get anxious and upset when I have to make a short trip away from home.
(What if the pain gets too bad? What if I forgot/don't have enough medication with me? What if, for those with trigeminal neuralgia - this is definitely how it was with me, someone moves their arm, or takes off a coat, or it gets breezy triggering the pain more? Too many what if's.)
I have more trouble concentrating than others seem to have.
Almost every day something happens to frighten me.
(For me when the t.n. was very bad, anytime a breeze came up, a strand of hair started to fall on my face, someone walked by too closely, the chance something would trigger the pain, was terrifying.)
At parties I am more likely to sit by myself or with just one other person than to join in with the crowd.
(Too many opportunities to increase the pain.)
I have sometimes felt that difficulties were piling up so high that I could not overcome them.
(The pain, the medications, the inability to work causing financial troubles, the loss of friends as they disappearred the more times you say "I'm sorry, I can't.")
I have often met people who were supposed to be experts who were no better than I.
(See Dr. Martinez, Dr. Jannetta, my lawyers.)
Whenever possible I avoid being in a crowd.
(Again, triggers for the pain.)
It makes me nervous when people ask me personal questions.
(It is tiring, hurtful, frustrating to say "pain, pain, pain.")
I do not feel I can plan my own future.
(It si up to the docs, the treatments, the surgeries, the medications.)
I am not happy with myself the way I am.
(Uh. duh.)
I very seldom have spells of the blues.
(see above.)
A windstorm frightens me.
(This is a killer for trigwminal neuralgia, and some other disorders such as some people who have CRSP, complex regional pain syndrome.)
The future is too uncertain for a person to make serious plans.
I have no fear of water.
(That is a killer for those with touch triggers.)
The future seems hopeless to me.
(Until the right doc and the right med/treatment/surgery comes along.)
I can stand as much pain as others can +
(No, I can stand more.)
I spend most of my spare time by myself.
My main goals in life are within my reach.
I am not feeling much pressure or stress these days.
I hate going to doctors, even when I'm sick.
Although I am not happy with my life, there is nothing I can do about it.
(Not depression,true for many of us.)
I am so sick of what I have to do every day that I just want to get out of it all.
(see above.)
I have recently considered killing myself.
(Same as the other questions about suicidal thoughts.)
My life is empty and meaningless.
(see above.)
I find it difficult to hold down a job.
Lately I have thought a lot about killing myself."

It turned out to be a longer list than I expected so I apologize for typos; because "I can read a long without tiring my eyes." - not. Or ending up in severe pain.

The reason I write about this, and will write more on it, is because of the way too many times many pain patients have been told "it is all in your head." or that their pain is psychiatric and not physical, regardless of the physical findings.
Copied and pasted from

Saturday, August 27, 2011

Alone in the storm or Oh brother where art thou?

The wind is getting a little stronger. I keep hearing the TV meteorologists, the governors and mayors, trying to scare me, maybe telling the truth, but it is easier to work at thinking it will be nothing like they are saying. The hurricane and tropical storm, winds and rains they are predicting for my area, will be nothing like their screeches - get inside, tape your windows, find a safe place - but instead just a whisper.

I went through almost all my surgeries alone, being taken down to the OR by orderlies, no one there to take my hand or touch my shoulder and say "It will be allright. I'm here for you now. I will be here when you wake up."

I am feeling the same bereftness now.

The people who are supposed to be my family, the sister and brother with whom I was raised, live 20 and 35 minutes away, respectively. Except for my brother sending me a manila envelope filled with pictures of me as a child, some of my report cards and some other things (I have no idea where they came from or why he had them), no note, just essentially an F--- you, you are not my sister" I have heard nothing from him, or my sister.

I have written before about some of the things they have done to me, yet have made me the bad guy, their children believing them. Except for one brave soul there is no family for me, and he lives a number of states away.

I was reading a novel and came to these lines: "You don't need to protect me anymore Neil." "Yes I do. I'm always your older brother. I want to be there for you." Everytime I read lines like these, 'I am your sister, I am your brother' it is a knife to the heart.

It is times like tonight, especially, when they keep talking about having a safe place to go, let your family know where you are, let them know you are safe, if you have no one go to a shelter, that the sharpness of the betrayal of family, that the turning away, for no reason, of the people that the world tells you to go to when there is trouble (and I know way too many people are in my boat, the 'family' nowhere near what the storybooks say) when it is the most acute.

For much of my days they are not there in my thoughts, they have disappeared, as they have in real life. It would be nice, I sometimes think, if I could call the sister, who once told me, "when I am just with you alone it is enjoyable" but somehow others (one sister) seemed to have made sure she turned away.

The brother and I have much in common. He is creative, an artist (or was at least). His hurting of me has been the worst because he has done it to me publicly.

He invited me, I do not know why, to his son's bar mitzvah. He called me while I was in the hospital. The date would be only a few days after I had major surgery. I told him that I was not sure I could come because of that. I was told that if I did not come it just showed what kind of person I was because he was extending himself to me and I was refusing. What could I do?

I took a train from Pennsylvania to Florida where they were living. He and his wife picked me up from the train station and took me to their home where my other 2 sisters were, having also come down (from Pennsylvania) for the celebration.

Not one person asked "Are you okay?" How are you feeling?" or even "How did the operation go?" I spent the visit pretending I felt well.

The surgery was not at the base of my pain though. It was when I was at the synagogue and the little pamphlets were being given out that told about the Bar Mitzvah boy and the service.

On the front was a thank you "to all our family" on my brother's side. Everyone's name was there. But mine. The hurt was physical. My nephew did call me up, with the rest of the family, to help cut the cake. That helped salve it some. I was not completely publicly cut out.

When my father was dying he hired people that were nurse's aides and not well trained. I saw some of them, one in particular, treat him cruelly. My 2 sisters who were often at the house protected them when I pointed out something horribly mean - like the time one aide sat there as my father, who had ALS and could move only one finger, kept asking for mushroom soup. He asked, then fell asleep for 2 or 3 minutes. Then he would wake "I want some mushroom soup" and fall asleep. The aide just sat there. My father kept repeating this request, maybe 5 times. I realized she was not going to bother so I said I would get it.

I walked into the kitchen. To my surprise there was mushroom soup sitting in a pot on the stove. It made no sense that she would not have said, "It's heating up, I'll go get it for you." The man wanted his soup. She had made it. What kind of game was she playing?

I brought the bowl into the room. "Give that to me, I will feed it to him." she demanded. Then she sat the bowl down on her lap, not feeding him.

Finally she said, "I need (something, I no longer recall what) from the other room. Go get it for me?" she said to me. As soon as I left the room I glanced back towards where he was sitting. Now that I was gone she was feeding him the soup. She would not do it while I was in the room. I had no idea why.

I told my sisters. "Then do not stay in the room." they replied. They did not care that she was doing something hurtful to him. More important that I be hurt and left out.

My brother came up from Florida for a visit. We were standing in my mother's room. I told him what had happened; that the aides were being downright awful to him and that I was also being treated horribly by my sisters. I started crying. I reached out to him. He let me 'hug' him for maybe 2 seconds then pushed me away. "Let them do what they want and you stay away."

His disdain(?) dislike(?) hatred(?) for me trumped his concern for our father and his getting the care he needed.

The third time was the strangest still (at least until the envelope with the pictures).

He had invited me to his daughter's wedding. She barely knew me, he had not talked to me in ages.

Nevertheless I knew I had to go if only so people could not say "See, I told you. What a bitch, she did not even come to her own neice's wedding."

He told me I could only come alone, there was no room at the reception for me to bring someone else. It would cost too much for more another table place for my friend who was driving me, even if she paid for her own meal.

The wedding was over and we were in the reception hall. He came over to me. "There is someone you have to meet." he said, almost pulling me along with him.

He called over to a woman I had never seen before. She walked over, smiling at David, and looking at me.

"Do you know who this is?" he asked me, his face and voice announcing his enjoyment.

"I am sorry but I don't."

The woman looked at him curiously. She shook her head. She did not know who I was. I was embarrassed. I assumed it was someone I should know.

He continued to look at me, almost gleefully. "Are you sure you don't know who this is?"

I was completely stumped.

"I'm sorry. I don't know you, I'm afraid."

"This is my half sister ( )." I was dumbfounded. None of the 3 of my siblings (half siblings) had ever had a relationship with their father or his family. What was she doing here?

It turned out she was the sister they found to take my place. Don't like your sister, for unknown reasons, (or at least ones you never told her) just go out and find another.

He had no room at the table for me to bring someone - I was totally alone - but there was ( ) the half sister, her husband, and her mother, seated at the same table where I had been told to sit and where there was no room. Surprisingly there was plenty of room for them.

Do you ever get over the pain? Do you ever get over the aloneness of having no one?

Is there ever shelter from the storm?

Friday, August 26, 2011

Things we can learn from a dog.

Never pass up the opportunity to go for a joyride.

When loved ones come home always run to greet them.

If something you want lies buried, dig until you find it.

Take naps and stretch before rising.

Never pretend to be something you're not.

Thrive on attention and let people touch you.

Avoiding biting when a simple growl will do.

On warm days stop to lie on your back in the grass.

On hot days drink lots of water and lay under a shady tree.

When you're happy dance around and wag your entire body.

When someone is having a bad day be silent, sit close by and nuzzle them gently.

No matter how you're scolded, don't buy into the guilt thing and pout. Run right back and make friends.

Be loyal.

Taken from FISH WRAPPER, Lancaster County/south edition, June 5,2009.