My book.

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

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Friday, 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.