My book.

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

Total Pageviews


Wednesday, June 29, 2011

I am not my disease.

I am listening to the TV show ROYAL PAINS. A character is making a speech about his having MS. "I am not my disease." he proclaims. "No one is."

He is right. Of course there is so much more to us than our illnesses, or in this case, my pain.

The doctor, Dr. Hank I think he is called, tells this character, "Maybe it is not MS. It could be Lyme disease." And this man, the face of MS (for the purpose of the show) and the face of 'my disease is not me." yells at Dr. Hank. "Yes it is. I am MS. I am my disease." A very quick change of truth, or an acknowledgement of what he knows in his heart of hearts.

I do not say to someone I have just met "Hi. My name is Carol and I have chronic pain." anymore than most people would announce they have MS, or cancer, or even, unless it is an explanation about why they do not want to shake hands, a cold.

It can come up pretty quickly though. "What do you do?" "Where do you work?" Those are usually the first questions asked of someone new. A way to get to know them through their job title. And are we not described by our job titles? "I am a doctor." "I am a teacher" "I am disabled."

The first two answers tend to get an "Oh really, how interesting." The doc is asked if he has a specialty (and hopefully not can you look at this rash on my hand?"). The teacher gets the query: "What grade do you teach?" The "disabled" does not get the same interested reply. "Oh, I am so sorry." Sometimes it is the awkward "But you do not look disabled." The naming damage is done. I am not the interesting one, the creative one, the funny one. I am the disabled one.

The titles skew every relationship, at least at the beginning. The doc is treated with more respect, not because of who he is but what he is. The teacher looked at as a helper to children, someone with a definite place in the community. The disabled as someone who needs to be treated with kid gloves or sometimes just ignored or marginalized. After all what questions can you ask us? Not the same as the starting questions you ask of the professionals. "What do you do?" you can still ask me. "I make greeting cards." "I sing in the choir." I speak 7 languages (no, not me but someone.)

The pain, the disability is not me. There are times when I feel or am made to feel I have to say it louder, when it must be proclaimed: "I have a disability." "I am disabled."

Not to make it my self definition but for you to accept what I cannot do, as much as I hope you will accept all I can do. And me.

Monday, June 27, 2011

Narcotics are not fun.

Last night I wanted to write a post but my eye was causing me a lot of trouble. The idea of sitting down and using it consistently to write, then read and edit, just seemed way too difficult. The idea of taking a codeine that late at night, it was around 11 p.m., seemed like a ridiculous thing to do.

I started to think about the way I take the pills. I am only on codeine with tylenol. It does not do a whole lot for me. I think the main reason I take it is so I can feel I have some (false) control as the pain increases. "Don't wait until it gets bad. Take it prophylactically.", I tell others I know who are in pain. Good advice but a very clear example of 'do what I say, not what I do".

It starts. Maybe it will stop soon, I think, and wait as it accelerates. By the time I decide I have no choice, I must take one, there are no longer any brakes to stop it. By the time I 'give in' (which is how I think of it) it is often too late for any help. Then I either give up and do nothing until it subsides, which can sometimes take hours, or take 2 and sometimes 3 pills. It becomes a waiting game: which will go away first, the awful narcotic feeling or the pain?

I hate the pill. I hate the feeling: cloudy, dry mouth, a specific kind of what I call 'codeine headache, but sometimes it does seem to help with the pain.

It is hard for me to know. Maybe it is time, did the pain wear off on it's own? Is it that I have reduced or stopped whatever I was doing that set off the pain in the first place? Because I do not know there is no way I can not have the drug at hand at all times.

I check my pockets and purse before I leave the house. My fingers feel around until I hit the circle that is the pill. "Ah, okay. Now I am ready to go out."

I think of my aloneness and lonliness. If I could find a way to meet people, if I could find a group, some kind of meeting where like minded people go, maybe I could make some friends. The answer is always the same: Looking at all those people, even if only 3, would be too hard.

It is one thing to go to church and choir rehearsal. The trade-off was a given - you want to sing, you have to take the codeine. That's the price you have to say. Fear of the pain and the codeine-itis stops me from doing it elsewhere.

That old line 'Today is the first day of the rest of my life.' needs to be my new mantra.

And the change I need to make, the first one, is agreeing within myself that taking the codeine is not a surrender, is not a failure.

I took one to write this post. A codeine at 10 in the morning? I can't do that. That was my thought. The new one I hope to keep: "A codeine at 10 in the morning? Yeah, sure, if I want to write this post, if I want to work to expand my life."

I let the pain shrink my life. There is nothing I can do to fix the pain.
The medication is a chance to expand it a little more. Let's see what happens.

Thursday, June 23, 2011

Narcotic contracts. Am I patient or potential felon?

I was at my pain doc's yesterday. While I was there I looked at the pain opiod therapy policy paper given to many patients. Theirs was titled as policy. I have seen them elsewhere titled as contract.

I understand all the problems related to pain medication, especially now that prescription drug abuse is allegedly at an all time high.

I hate that it, along with the "war on drugs", is being taken out on pain patients.

My meds are at the lowest level of narcotic. I have been lucky in that my doctors have always understood my request to try more potent meds. Invariably they do not help and I just go back to what I have been taking for years. I have never been asked to sign a contract about how I will take and use these meds.

When I read these policies and contracts, even though I have never been asked to sign one, my blood boils.

If I had diabetes or another disorder that required a daily drug I am not seen as a potential abuser and poseur. In fact, now that I think of it, diabetes is a perfect example.

One of the contract promises I have seen reads "I will make my month supply of medication last for the full 30 (31) days. If I use up the drug before the 30 days I will not be able to get more until the beginning of the next 30 (31) day period."

Pain patients can have better and worse days. If a worse day they may need to take an extra pill or two but if they do, then they will not have enough to cover one or two more days until the end of the month period.

A diabetic may eat sugary foods, be under stress or for other reasons their insulin need goes up. To my knowledge they are not told, 'well, tough'. They get the extra medication to make up for the time or two they had to use extra. Why are we treated differently?

"I promise I will not use illegal drugs while taking the medication prescribed by the pain clinic." That should be pro forma for any docs office. After all, every physician should want their patients to promise not to use 'recreational' drugs.

The worst of all, as far as I am concerned, is the extracted agreement to random drug and urine testing.

Because I have pain I have to sign a paper that says I promise not to be a felon. No other specialty requires this. No other specialty treats us as guilty until and unless proven innocent. No other specialty treats us as less than what we are - patients, in need of help, not judgement and implicit name calling.

Monday, June 20, 2011

Losing my elasticity?

I am going to vacation bible school tonight. I know it will require at least one dose of codeine.

It is fun, not something that I expected it to be, so well worth the time. A lot of socializing, interesting conversation and thought provoking ideas. Also, the pained part: a decent amount of trying to look at more than one person, bright lights, and at the beginning and the end, mostly, a flashbulbs going off as the church histoirian takes photos.

It is a beautiful day. Also well worth the going out and doing something.

But that means driving in the bright sun, looking around: today's errands, the grocery and probably Walmart, using my eyes, provoking the pain.

I remember when the pain was at its worst. I was on high levels of narcotics and in horrendous constant pain; but I got done what needed to be done. Pressing forward with my medical malpractice lawsuit by doing depositions, interrogatories, research, and writing my book, high intensity eye work both but both needing to be done, and so they were.

I popped pills, at one point up to 14 grains of codeine a day (4 - 6 is the normal dosage) accepting the awful feeling they gave me. I had no choice - I had work to do.

Today I think about going to the store and then to the church meeting. It is too much. I do not want to take more than 1 pill, for the whole day. I do not want to make the pain worse by checking out the store aisles or letting the sun beam into my eye, setting off the light sensitivity pain, making the eye usage harder and the pain more severe, and harder to shake off.

It bothers me. Why could I do it then but cannot now, or really, the question - why do I not want to do it now?

Of course the easy answer is who wants to cause themselves pain if they do not have to? It is not necessary to complete the errands today. Nothing I need to get is of vital immediate importance. It can wait, making 'school' tonight the main painful thing I will do today.

A part of me gets mad at myself. Why could I do it then but now it just seems like too much trouble? Is it age? Maybe. 20's, 30's then, 50's now. Yep, maybe it is age.

Is it the tired of putting myself in pain, of placing myself in situations that I know will make the pain worse, or, if a good day, has not yet started? Yes, maybe it is the act of being my own torturer.

There is so much I want to do. I hate the being alone and the lonliness. I deplore the inactivity. The difference, I think, is then I did what had to be done, what must be done. The store, the gas station, even medical appointments - none of them will make much of a difference if I put them off for a day or two. The hatefulness of the not doing may come down to the aloneness - most days, if I choose not to go out, that's it, I see no one. On a day like today I have the church to look forward to for tonight.

As I write this out my thoughts work to answer the question. Maybe it is the lack of connectedness to the world but also the lack of stimulation, of seeing other people, of having things to think about outside of myself. Maybe, one of the reasons I could do it then and less so now is because I have nothing of enough importance in my life that it must be done, the pain be darned. What a sad thing.

I have no answer for it. Just a 'here is my thought' for today post.

Saturday, June 18, 2011

Things I never think about that make me go Wow(!).

I was driving on the turnpike the other day. Not much going on, my mind looking for things to notice or think about. I was in the left lane, folks behind me, so it was time to get back into the right lane. I turned on my signal, moved the steering wheel slightly and the car just glided over into the right lane.

What a cool thing is that?, I thought. I barely have to maneuver the car for it to do that. I never thought of how easy it is to manage my car. And how manageable and agreeable it is to being maneuvered.

That started me thinking about other things that I rarely if ever think about, or maybe even notice.

How cool is it that someone speaks to you and immediately your brain translates the words into understanding? And how cool that my reply comes instantaneously?

How cool is it that a nose, a mouth and 2 eyes can be the same and just different enough that almost none of us look exactly like anyone else. How cool is it that each of us have faces so individualized and recognizable?

How cool is that that I can write an email and someone halfway across the world can read what I write in just a few seconds' time?

How cool is it that someone who plays a musical instrument can translate the musical signs and notes, send them down to their fingers, and play an instrument? Or for a singer, can translate and without active thought instruct the voicebox to make the different notes?

How cool is it that pets can understand their names and become members of the family even though they are 'just' animals?

How cool is it that one day we can be sick as a dog from some little tiny germ and then within a few days feel as though we had never been sick?

How cool is it that there are all kinds of life that are so tiny we cannot see them but they still have ways of letting us know they are there?

Funny. It was the car that gave me the one thought but each additional one led me into the path of another. And how cool is that?

These are just the ones I can think of at the moment. What makes you go, wow, isn't that amazing?

Thursday, June 16, 2011

Bad day, pity party.

I was at the dental clinic today. I had a root canal done, part 2. It was not bad. (I am always surprised. The whole process is not bad or painful, absent the shot of novacaine - talk about ironic, the thing that hurts the most is what is used to take away the pain.) Even though I no longer have the touch induced pain of the tn I do have anaesthesia dolorosa (painful numbness). My main fear is of being touched on the left side. The numb is unpleasant but, even after 12 years of no triggered pain, my mind still carries the fear.

Being there and talking about the costs of the procedure with the dental student (she is a dentist but a resident in endodontics - she and faculty keep telling me that when I insist that faculty come check her work: after all in a hospital, the surgical resident is an M.D. but he is also a student. He never does anything big wthout the attending double checking his work. This, to me, is no different. She did a good job btw, I thought so and so too did her faculty advisor dentist.)leaves me feeling despondent and angry - at myself and at my life.

I never expected to be poor. I travel an hour each way to get to the ckinic because it is the closest to me that costs the least, but the least is not little. The root canal was $250.00, less still than many other clinics much less a private doctor. The crown that I should get will cost an additional $350.00. Between the 2 that is almost one full month's disability income.

I hear the $350.00 number. Inside I start to cry. I do not have that kind of money. How in the world did I get here? I think, sobbing inwardly. My siblings are all doing well, to my knowledge. I know for sure 2 of them are. The third probably is. Had they ever acted like family I could go to at least one of them for help.

My mother tried to leave me extra money when she died. She told me "I know your sisters and brother will not help you so I am leaving you a stock market account." After all, they had not been there for even one of my surgeries.

My father would not lend me money for air fare to get to a surgeon in California, (a surgeon recommended by my neuroopthalmologist in Phila. I went to a couple of states for operations/procedures but they were all recommended through Dr. Schatz or other surgeons after they operated on me. It is funny, even writing about going to California my first inclination is to defend it, making sure you know I was not doctor shopping.) He told me to call my brother. For some reason he told my father he would lend me the fare.

David and I had not talked in years. I called him anyway, not having any other option. "Charlie (that is what I called my father) told me to call you and he said you were willing to lend me money to get to California." "Oh no." he said. "To do that I need to talk to the surgeon first and besides I meant money for a psychiatrist."

I was not going to let him talk to Dr. Wilson, the surgeon. After saying "money for a psychiatrist" I had no idea what he might say to him to try and convince him not to operate.

Another time, after I lost one of the implants to an infection, I needed to go home with an IV port so I could give myself intravenous antibiotics. The doctors told me I should not go home alone without anyone to help me. Thinking when push comes to shove, family will come through, although I should have learned something from history, I called one of my sisters.

"I have this IV and need to not be home alone. Is it possible I could stay at your house for a few day, maybe slightly longer." "Oh no." she said "Why don't you just go to a convalescent home?"

When they learned of the money my mother left me they got a lawyer to make sure the money did not come to me. There were other issues involved: I did what I was asked to do for my mother when none of the others had even visited her. I saw the severe psychiatric state she was in. I was asked by the trustee of my father's estate to find placement for her because they could not keep her in the rehab hospital for more than 3 days when he called. There was no time to call the others and try to work this out together. A place had to be found quickly.

I went with an RN friend to 10 residetial care communities. I found one that was nice. It even had a dog thast visited the patients everyday. My mother would love having a daily dog visit.

She arrived at the center and I stayed there for about 6 hours for the first 3 -4 days to make sure she really needed to be there. Her behavior and demeanor proved she needed to be somewhere with active nursing care.

The trustee told the family where she was (I think. At this point I truly do not remember how they knew.) When I came to visit the first day they were there my mother was in even a worse state. Each time they visited the nurses told me their visit was terribly upsetting to her and they had to give her extra medicationo to help calm her down. This went on for a number of days. Then, one day, I came to visit and my mother was gone. Without telling me they took her out of the facility, against the advice of the doctor's there and her private doctors.

While she was there I tried to get her declared financially incompetant, and only financially. I had found signed blank checks in her home. Some were made out, in different handwriting, to 2 homecare aides who had worked for her. The only problem was that the check was listed in the memo space as being for salary for work during the time she was in the hospital and they were not doing work for her. I did not want to see her lose, or possibly have stolen, all her money or she would have nowhere to go.

The response from my siblings was to have their attorney tell me they would sue me for the extra money my mother left me. The only way they would not do it was if I dropped the competancy claim. If, and only if I did that, they would make sure she had competant nursing care.

What could I do? I dropped the claim.She needed to hsve someone take good care of her. Which brings me back to today.

I could have continued fighting for the money. Had I done so there would still be money left so I would not be on the verge of poverty, (My income is way below poverty level. I own a home, which is a whole 'nother story that, because of lies and what appears to rise to the level of fraud, may take what little money I have left to fix; and lose me money if I have to sell it. The irony is I bought it for equity.)

When the pain started I had to be on assistance until I could get disability. I was lucky I had worked long enough to have paid sufficiently into the system to qualify. Being on public welfare was humiliating, embarrassing, devastating.

I never thought that at the end of the line I would be back there. I get food stamps and help with my heating costs. No one helps with dental unless you can find a clinic, or have a family that can help you.

I know my story is not unique. It is just as a girl growing up in upper middle class suburbia this is one scenario I never saw for myself. I went to college, worked during college and after, and expected to have a working life, financially capable and able.

Becoming disabled is not my fault. I know that, usually. But then the thoughts come. If I didn't have the tn, if I had a family who would act like one (they actually found another sister for themselves. We are half siblings who grew up together and the half part was never talked about - the father we grew up with was biologically mine, not theirs. One day, after all of this, they went out and found their other half sister with whom they had never had contact and made her, and her mother, no blood relation to any of us, their new sister and mother, if, if, if. And so I write this post today.

I am not going to reread it, I will post it and maybe decide another day when I am not so overwrought by it all, to delete it.

Tuesday, June 14, 2011

How come you know our language?

Ciao. Ola. Bonjour. Edema. Cutaneous. Abrasion.

My cat, Sassy, is sick. We were in the exam room at the vet's office. I went to pick her up to calm her down. In her fear she scratched me - right across the healing incision from the battery change I had about 7 weeks ago. The vet took a look. "You should see your doctor about getting some antibiotics so it doesn't get infected." Normally I have no interest in taking them, especially when it is 'just in case' but I lost the first 2 implants to infections. I could not afford to lose this one.

A med student, Mike (pseudonym), was doing his rotation at Dr. Rogers (pseudonym), office. He saw me first. I showed him the scratch. I also pointed out a little red area by the side of the left side of my mouth where I have no feeling. "What happened to your face that you have no feeling?" he asked.

"I have a Sturge-Weber syndrome, you may not know what that is." To my surprise he did. The rest of what I explained was mostly unknown to him.
I rattled off the important information. "The feeling was lost from a thermocoagulation rhizolysis procedure - you probably have not heard of that." No. he had not. "I had an MVD", he did not ask what that was or indicate he knew, "that paralyzed the face." I finished my dissertation. He seemed to get the general picture.

Dr. Rogers came into the room and asked Mike to tell him why I was there.

"What does she need to do for this? What does she need to look for?"
The student looked at me. "You need to wash the area, keep it clean and make sure you see no edema." I knew what he meant but had to make sure he knew I knew. "You mean no swelling?"

It is a funny thing about medical terms. I worked in hospitals for many years, started a physician assistant training program, and of course, been hospitalized many, many times. I know the lingo. I do not know the number of times it has been held against me, "Why do you talk like that?" Knowing the words is a problem for some doctors (and other medical people). Many other pain patients have told me they hear the same thing. It is odd that our intelligence and ability to learn the 'language' of med-speak is not as appreciated as if we spoke to our docs in, say, french.

I told Mike "When I started the PA program we were told to learn medical terminology before school started."

We had a book we were assigned, just like the French and Spanish textbooks we had in language class in high school and college. It was no different than any other foreign language I had to learn.

I speak 3 languages: English, some Spanish, and the language of medicine.

Erythema, tractotomy, fusion. Arrivederci, adios, au revoir.

Sunday, June 12, 2011

Thoughts you should keep to yourself.

I was abused as a child. I have no memory of my childhood. I do have all the signs and symptoms of someone who was abused. Others have circumstantially validated it.

Why in the world would I write about this?

One of the signs was being afraid of touch. If I dated in high school it rarely went past the first date. As soon as an arm went around me or worse still I saw a kiss coming, I was as fast as an eel in making my getaway. I had no idea why I froze at the moment of a hug or something more. I wanted to date, but had no idea how to do it: how do you have a relationship when your body tells the other person, don't you dare touch me?

I was not aware of my reaction until I was doing CAROUSEL in a dinner theater. I am not a dancer but as a member of the chorus we did choreography.

At one point the women stood at the lip of the stage. The men stood behind us. We sang and did some moves, I do not remember what - but this part I vividly recall. Your male partner lifted you up and then brought you back down. All the other men did just that. My partner, Lou, a very strong guy, went a step further. He literally threw me into the air and then caught me. Every show I knew it was coming, and I trusted that he would be there, safely bringing me back down to the stage.

After one show Lou was standing next to me. He put his hand around my waist. To my surprise he quickly removed it. "Everytime I touch you, you flinch." I could let him physically catch me when it was a public show. Privately, I recoiled at the merest attempt at a touch. Until he said it I was completely unaware I did that.

Trigeminal neuralgia pain is usually triggered by touch. Mine definitely was. I do not know if it is true for every disease but for those in chronic pain the question is often asked "What did I do to deserve this?" "Is the pain related to something psychological?" It is a normal question since most pain patients are often disbelieved, told "It is all in your head." I was told that. The depth of the pain told me differently.

It took about a year or more to find the doctor who told me my birthmark, the one on half of my forehead, exactly where the pain was, was a sign of a birth defect. Most birthmarks do not change color. Any time I was joyous, angry, embarrassed: almost any highly charged emotional state, it turned bright red. That was because of the blood vessels that fed it. And a sign of all the dozens, if not more, extra blood vessels in my brain. They were the cause of my trigeminal neuralgia.

No question why I have it. I have a birth defect, one that I can see. But then I think, I am afraid of touch, and now I have tn which forces me to be afaid of touch. In the early days, if the thought came on a relatively good day I thought how ironic I do not like to be touched and now I have this. On a bad day, even knowing the anatomical reason for my pain, I wondered was it something I did? I know it is not. It is mere coincidence that these 2 things: being afraid of touch and being afraid of touch, happened to me.

I want to get over the fear of touch. At my age most people would have had corrective life circumstances. For me, the pain came before I could experience touch from someone trustworthy. Even though the touch induced trigeminal neuralgia pain is gone, the fear is still there - I think this is true for everyone who has some kind of problem that is set off by something specific. Does the fear ever go away? Maybe not, but I think when life shows you that the fear is no longer valid it subsides, fading into the background.

My TN touch pain fear resides farther and farther in the background. My experience, my corrective life experience, shows me the touch pain is gone. I just wish I had, or can have, the corrective experience(s) that teaches life itself is safe. I am way out of my teenage years. I hope it is not too late.

Friday, June 10, 2011

Optimism bias vs Groundhog Day

A story in Time magazine was called The Optimism Bias*. It spoke to what I see happen in my life, much of the time.

I wake up. I have yet to use my eyes. I feel fine. It's today. Today it will be fine. Today I will be fine. Then I stretch. As I do my eyes move in the direction of one of my arms and then up to the ceiling. Oh no, I think as my face scrunches up in an expression of distaste, hurt, disbelief, some anger (some days more than some). The pain is still there. But it was supposed to be gone by today.

Most of my life is also like Groundhog Day, the movie.

I want to have somewhere to go, someone to play with, somebody to do things with. I want those things but I also do not want the pain.

I am finding as I get older I am more loathe to do things that I know will bring on the pain. Go to the store today? Even though it is only by myself, I find the answer is often a No. I do not want to go, look at all that is there and by doing so set off the pain. I hate staying in but I hate the pain and the drugged sensation even more. So today I stay in. Tomorrow I have somewhere I must go, and want to go. It is to a picnic but the dread is also there. How painful is this going to be?

Everyday, the same. I have the hope but I cannot repress the truth. I put it out to the Universe: Please, let the pain not be there tomorrow. The Universe does not answer, not about this part of the pain.

So it is strange. Because I still go to bed each night, expecting that I will wake the next morning, that expectation an article of faith, an act of optimism. Unless we are at the deepest level of despair the thought of another day brings the chance of new experiences, new possibilities, new life, a day without the pain. Optimism.

My optimism goes even further. I see what I often think of as an idiocy inside myself. How can I still think tomorrow will be different? And sometimes an even stranger and more optimistic thought: It will be over, almost as if none of this had ever happened. I will be back to where I was when it started. Not necessarily 30 years younger, which would be nice, but at a point where most of life's possibilities still stretch before me.

Even when it seems the stupidest of thoughts, it is the optimism that lets us, that lets me, put my one foot in front of the other.

*Here is the full article:,8599,2074067,00.html

Wednesday, June 8, 2011


I lost my singing voice after the neck surgery I mentioned a few posts back (My neck is held up with 2 clamps and 12 pins). I was a soprano who sang in the high range. After the surgery I was a very, very deep bass.

A number of years ago I visited a friend of mine and her husband. He likes shooting guns. I am very pro-gun control. John (pseudonym) insisted "How can you be against guns when you have never shot one?" I refused but, after his dogged persistence, I took the gun. I pulled the trigger, at the sound of the Bang! my right ear immediately started ringing. It continued for about half an hour. I lost most of the hearing in it. It was only when I realized I had become one of those people who smiled and said "That's wonderful." only to find out the person with whom I was speaking had told me their dog had died.

I went to an ENT doctor (ear, nose and throat). I told him my story: I shot a gun and I could no longer sing a solo in the church choir.

I read his chart note a few years later. "She no longer accepts singing engagements. ... She lost her hearing in a gun shooting incident." Who is that person? A woman who sings professionally and was involved in some sort of gunplay? Instead of a woman who sings in church and once shot a gun I sounded like a woman of romance, intrigue and mystery. I wish that was me.

My left eye usually has a lot of lubricant underneath it. It dries out because of the paralysis and inability to close well. I use artificial tears sometimes up to 10 - 15 times a day.

"Do you want a tissue, your eye is tearing?" "Please don't cry." "I had Pink Eye. Have you tried (this drug?)." One woman took my arm and helped me off the train, deciding, for some reason, I was blind. I did not know what to do so I let her and then thanked her, very much.

When the pain gets worse for some reason the eye opens wider. Sometimes the eye looks good and feels good but usually the more open the greater the pain.

"You're eye is really open today. I am so glad you're feeling better." "Your eye must be doing really well it looks so good and open."

Everything is interpretation. Do I take the time to explain? Do I make them feel bad by saying "I'm not blind." "I'm not crying." "No. You're wrong, I am really having pain. This is a very bad eye day for me."?

Do I bite my tongue and let them have their joy at feeling I am better?

Bottom line, do I become a lady of mystery, and lie? And if I lie, am I helping them, hurting myself, or both? (And, in the end, does it matter?)

Monday, June 6, 2011

Migraine ad - "These things are for real."

I had not seen this ad in a while. I had hoped the company decided to stop running it. But here it was again, over and over during the last couple of days.

The first time I commented on the ad was when I wrote a discussion topic for my women in pain awareness site. (
It was in December and the thought occurred to me that there was a connection between Santa and chronic pain. After all, Santa is (spoiler alert) not real yet we believe in him or at least act as if we do, if only for the sake of children.

Meanwhile chronic pain is real and yet we often act as if it is not.

I have written before about this disconnect between the reality of chronic pain and the lack of belief. In fact that is what prompted my creation of the women in pain awareness group. I was astounded when I first learned that women, even more than men, tended not to be believed when they complained of chronic pain. I honestly thought it was only me. I assumed I just had a really bad run of luck with my doctors and family.

When I first started with my pain it was 1979. Chronic pain had not yet become an industry. As clinics and specialties popped up, psychologists started to specialize in chronic pain, and pharmaceutical companies found there was money to be made in drugs targeted at those with chronic pain belief was still not catching up.

It has been 3 decades since my tic started. People are able now to at least talk about chronic pain. Celebrities discuss their own struggles, famous and not famous alike write books about it. Doctors are less inclined to pat a patient on the head and dismiss their complaint of constant pain. And yet...

The woman comes on the screen. I have migraines, she tells us and "These things are for real." It is 2011. Must we still defend the reality of the pain?

Sunday, June 5, 2011

G-D gave me a Miracle (my doctors agree).You may call it something else and that's ok..

Some people will call it Mother Nature, The Universe, happenstance or coincidence. I call it G-d.

My neurosurgeon wrote in my chart that what happened is "amazing" He says "I have to see the definition of Miracle before I call it that." My opthalmologist and neurologist use the word Miracle.

Trigeminal neuralgia, the cause of my pain, is also called "the worst pain known to man." and "The suicide disease." For me it was the latter.

Trigeminal neuralgia, for me, was horrendous, life destroying pain, constant and sporadic in the left upper side of my face. It came out of the blue smacking me in my left temple: a lightning bolt burrowing - a thin line of burning, sharpness, a knife turning and slicing through my face. A slight breeze, a wisp of hair could set it off. Wind, cold, bright sun became my enemies; fearsome and loathsome, because they too caused tremendous pain.

It was only one half of one half of my face but it totally disabled me.

The first operation stopped the pain. For three months. Then the blood vessels that had caused it and been removed grew back. And the pain assaulted me again.

The next brain surgery and the next and the next, six all told, did not help. I was better in the summer because the weather was better. That let me go outside more but the pain was not stopped.

I suffered terrible side effects, from drugs and surgeries. The pain continued. I could not give up on finding a way to stop it. I had no choice. TN was my enemy. It had to be contained. I stumbled through more tests, drugs, even alternative treatments, such as hypnosis and acupuncture, all to no avail.

At the end of my rope and strength, suicide became the only possible way to end the pain.

I told the psychologist I had been seeing. She suggested I meet with a thanantologist, a specialist in death.

I met with him for an hour or so. He told me I should call him if I ever needed his help. I was not sure how he meant that.

The next step was an inpatient pain clinic. They were very nice there but told me at the outset they could not help me. They worked with pain that was from the neck down. Exercise, and PT could not help me. The group therapy, relaxation techniques, biofeedback could not hurt so it was worth trying.

Dr.(H) the owner of the clinic and a psychiatrist, asked me directly. "What will you do if we can't help your pain?"

"I will kill myself."

"Carol, I called the Court's chief psychiatrist to see if you could be involuntarily committed since you are threatening suicide."

"It's not a threat. I don't want to die." I said. "I just have to do whatever I have to to stop the pain."

"He agrees. He told me we could not have you committed since your threat is in response to a legitimate medical situation."

A month later I was packing to leave. My pain was unchanged. Members of the staff added to their goodbyes. "We'd prefer you don't kill yourself but we'll understand if you do."

I was ready to go home and act on it. At the last second the director called and told me another neurosurgeon had agreed to see me.

I went to the Massachusetts General Hospital expecting to have surgery. Dr. Sweet (the surgeon) and I had talked about the operation in a long phone call. He was going to cut the trigeminal nerve root. Once I was admitted to the hospital the surgery changed to a mini- frontal lobotomy: "You'll still have the pain. You just won't care that you do."

I said I would try anything to stop the pain but, not this.

The experience with him was very difficult and crazy making. I went home thinking if I killed myself I would not know if it was from the pain or from what had happened there. I decided I could not do anything, including suicide, until I felt more sane.

That was in 1981.

I limped along with the pain for five more years; slightly less disabled primarily because I was on more drugs.

Finally I went to see Dr. Barolat, a neurosurgeon practicing with the same group where my first surgeon, now retired, had been. He had stopped the pain. Magically, I thought this man could do the same, and at first he did.

I agreed to a brain implant, called a dorsal column stimulator. It did nothing for three months. Then suddenly it kicked in.

My pain was gone about 85%. I was still disabled because of the eye movement pain but I was able to stand in the rain, the cold, the wind. And not have pain. It was terrific.

The wonderfulness lasted only 7 months. The battery that powered the computer chip that was the implant died. I somehow also moved the wire that connected the battery to the chip.

Surgery to change the battery and re-place the wire was done at the same time. It required 2 incisions. That might have been why I ended up with an infection. I had to have the entire implant removed.

We tried another one about a year later but that did not work at all.
Dr. Barolat said nothing more could be done. A few months later he changed his mind. "I have an idea." Instead of putting the implant in the neck he would put it in my brain, directly stimulating it. It would be experimental but pain was pain. It made the decision for me. "Let's do it."

It took many weeks to find the right combination of stimulation before it seemed to be helpful. It never did what I needed though. I stayed on medications, including a lot of codeine. I never got to a point where I was not still disabled by the pain.

I waited a long time for relief.

Finally I was back to where suicide was the right and only answer.

I stood in my living room, a bottle of pills in my hand.

"Okay." I said as I looked at them. "There's no other choice."

I felt sad. And scared.

And then I felt this compelling feeling.

It was not a voice or words, just a sensation of being pulled. You need to lie down..

I could have fought it or refused but did not. I went and lay down on the couch.

When I tried hypnosis to deal with the pain it had not helped at all. It only taught me how to put myself into trance.

The feeling continued. Put yourself in trance. I thought, I don't know why I'm doing this. There's nothing to say. I know what I am going to do. And then the words came into my head.

I did not hear a voice; the words were just somehow there. "Your brain needs to know and remember that the left fifth nerve, your trigeminal nerve, has been cut, burned and killed. It is totally and completely dead. Your brain needs to know and remember that."

The words were true. They continued, over and over, for about 10, maybe 20 minutes. I had never heard of pain hypnosis being done in this way. It was always with "glove anaesthesia": The therapist gave instructions to make your hand numb. You then transferred the numb from your hand to the pained area. The only other way I knew was to talk directly to the pain. I had never heard of addressing the brain directly.

The words talked to my brain. Finlly they ended and I came out of trance.

And the pain was gone!

I could touch my face. A face that had needed to be washed under general anaesthesia. A face that had such pain I let them cut into my brain over and over again. And give me narcotics, even opium and morphine.

That was in 1998. I don't know why G-d gave me the Miracle. For some reason it did not effect the eye pain. Why He would stop part and not all, only G-d knows. Maybe it was because it was the face pain and not the eye pain that was creating my self imposed death sentence, .

I know people, including me, think when there is a Miracle everything changes, life is suddenly terrific.

It is not.

You know my story. I want to work but the eye won't let me. I did not get a family, the one I have, the ones who live up the street did not suddenly start caring. I still have to use the word 'disabled', because I am. The full life I want and still expect, even after all these years, did not materialize.

I am often unhappy with my lot. But.

But I can touch my face. I can go outside. I thank G-d every day for this. He probably gets tired of hearing me say it for I also do it when the wind hits my face or the rain starts or its cold or breezy, or, or, or...

Saturday, June 4, 2011

The folks who believe us, and in us.

"How much does anyone really know about the person sharing his bedroom?" asked the district attorney in an episode of Law and Order. The remark was related to a defendant who turned out to be very psychiatrically ill, her paranoia causing her to kill her college roommate.

What does that have to do with women in chronic pain?

It reminded me of the folks who refuse to believe us.

I am being somewhat redundant, coming back to a theme already used - but it is one I have no doubt I will be revisiting a lot.

It is an irony that our pain may teach us more about those we know than anything else we have ever shared with them.

A caring and adoring husband, a sweet cousin, sisters and brothers acting like good siblings, friendships tried and true. Normal loving relationships.

And then we become chronically pained.

The thoughtful husband grows quickly tired of his wife's pain complaints, of the "I can't's", the "I am in pain", the plaintive cries "Will it ever end?" The same for the other people in our lives.

It is hard for me to find positives in having the pain, in being alone through the majority of my fight. But positive there is. The chaff is separated from the wheat, the caring from the 'I am here as long as it isn't hard.'

The pain can be the most defining moment for knowing who that person is: the one we can trust, the one with whom we can share our confidences, our fears, our hopes, our secrets, the one on whom we know we can depend.

It is the ones who remain who deserve not only to share our space but to have the pleasure of having us in their lives. And them in ours.

Thursday, June 2, 2011

Make tenacity your partner.

My friend Jennie (pseudonym) went to her general practitioner (G.P.) complaining of cough, fever, and generally feeling bad. Chest x rays showed a spot that was pneumonia.

After 6 weeks of medication and rest the doctor ordered more films. The spot was still there. Dr. Jones (pseudonym) thought it was an area of infection or just a remnant of the pneumonia. He told her "I'm sure it is not cancer. Nothing to worry about."

Jennie was not satisfied. She insisted on additional tests. She was right to do so: it turned out the spot was cancer.

Jennie returned to her G.P. a few weeks after her successful cancer surgery. Her doctor was apologetic. "I do not see patients the same way anymore. I was so sure you did not have cancer. I will be paying much more attention from now on."

I think too many chronic pain patients have had similar experiences.

A doctor decides we are making too much of our pain: it is not as bad as we say. Pain is completely subjective, its symptoms mostly invisible. The ones he can see may not have diagnostic meaning when looked at individually. The time is not spent or available to consider the problem, and patient, as a whole, so he does not take the time to put them all together in a way that might lead to a diagnosis or treatment.

Our complaints may not be an indication of a killer lurking, like Jennie's was, but chronic pain can be a murderer all on its own, either just the pain itself, killing spirit and life day by day, or a more insidious executioner that can be held at bay, such as lupus, rheumatoid arthritis and others that, the earlier they are caught, the better the treatments and treatment outcomes.

Jennie's tenacity helped to heal her. She refused to be placated by her doctor's reassurances. She insisted on further tests and follow up. That may have well saved her life.

We need to be Jennies. We need to speak up: loud and strong, fighting if necessary, to be heard and to get what we need from our doctors. And if they refuse to hear us or belittle us, or treat us like children, we need to have the courage of our convictions and find a doc who will listen, and act as healer.