I FEEL YOUR PAIN TOO.

One of my old classmates got stung by a hornet. There was a picture and it looked really bad: very red, very swollen, and painful.

He posted a picture at our high school group page, writing "Sure can not compare this to Carol's pain..."

I appreciated the nod, especially since people there had been mad at me because my posts from here automatically post at that site. (In a way it is appropriate, it is my status update after all) One person wrote he felt bad for me but seeing the posts and reading about my pain was getting "old". (I reminded them they could delete it and not read it, reading it was a choice.) It was a kindness to acknowledge my experience.

It reminded me of the other side of having chronic pain, the other side of "I don't believe you".

I know people, and I am sure I am not alone in this, who preface everything they say about how they feel with, "I know this is not as bad as your pain". Granted a cold, or a cut finger does not rise to the level of trigeminal neuralgia or CRPS, etc. but when it happens to you it is the worst pain, at least for the moment when and while it is happening, and for as long as the pain and discomfort lasts.

It is a strange road to travel.

People tend to be with chronic pain like they are with their political party, one side or the other. It is okay to accept the level of pain in which most who have chronic intractable pain live with, we revel in those that understand and believe; who do not argue with the truth of it. And most of us are not breakable china dolls. You can have pain from an injury, the bite of an animal or a bug, or feel miserable from a horrid cold or allergies. You can tell us how truly awful you feel without feeling saying so negates our pain.

We want you to understand us. We also want you to know we understand and feel your pain, no matter what it is from or how long it may last.

And to my schoolmate - feel better real soon.

BELITTLING OF CHRONIC PAIN - UTUBE VIDEOS.

I have only looked at 2. It was too frustrating to watch more.

The first talked about how pain is only temporary. It was supposed to be inspirational. It was not.

The other was a 5 minute video: http://www.youtube.com/watch?v=4b8oB757DKc.

It was the same old regurgitation of: pain is a result of lifestyle, emotional and psychological issues/incidents. Change your lifestyle, change your outlook and viola you will feel better.

The presenter suggested diet, activity levels, lifestyle may contribute to your chronic pain. Okay. I will agree to that, on at least some level.

She continues by stating you can 'retrain" your brain.

This is not a new concept. The explanation by some is that the brain learns to keep the pain. If we could retrain it, break the connection(s), we might be able to reduce or stop the pain but...

That is not what she is talking about. Her 'retraining' is looking at "contributors" to your pain experience, how your thoughts and emotions affect the nervous system. This part is legitimate. I think most of us are aware the pain may be worse when we are stressed or anxious and better when we feel relaxed and happy.

The unfortunate part is she goes where those who want to diminish the real, medical, legitimate truth of chronic painalways go.

She suggests looking deep into yourself to see what was happening at the time the pain started and how that may have influenced the developing of the pain. She feels that there are connections between, say, a trauma (emotional, psychic) that happened and the pain starting/worsening.

This is the same old hogwash: it is a psychological issue. Find the trauma and you find the key to the pain.

I moved to NYC 6 months before the pain started. Shortly after arriving I became depressed, for a variety of reasons: new city, no friends, a job I hated.

I wondered, for years, if the depression caused the pain, at least to start. The only problem with that scenario is that my pain is the result of a birth defect. I did not know I had it; and even if the depression allowed for some form of reduction of my brain's ability to fight the effects of the defect, it was not to 'blame' for the trigeminal neuralgia. Because of the birth defect and dozens, if not more, of extra tiny thin blood vessels throughout the left side of my brain, this was going to happen. If not then, then soon.

My family, to this day, think, even after 12 brain surgeries, this is a farce, I am merely lazy, a malingerer. I enjoy not being able to work.

If this is the reaction to a proven disorder how much harder for those who live with fibromyalgia or CRPS that has no proof for its presence?

When it is surmised that cancer is a result of poor emotional/psychological health the naysayers come out in force. No, it is not! It is the result of cells going crazy. No one says your M.S. or Lupus or diabetes is the result of your thoughts. For the first 2 they may say 'yes you have the disease but your pain cannot really be that bad.' For the latter, I do not think I have ever heard it tied to the person's thoughts.

At what point does our disease, our 'disorder' become on a par with all others? What must we do to have the word 'disbelief' removed from the vocabulary of those who talk (and sometimes treat) chronic pain?

LOSS OF THE APF (American Pain Foundation) AND WHAT NOW?

I am so unhappy that the American Pain Foundation (APF) closed down.

I understand the issues with the close ties to the pharmaceutical industry. My immediate reaction was so what? They are all we have. I questioned the basis behind the hoopla, especially when I found the article, written by Pro Publica, that seemed to initiate the investigation. The authors bias is apparent in the chosen title of the article: The Champion of Painkillers.(1)

In reading the article there are some things APF has done that do give me pause, a friends of the court brief, for instance, in support of a doctor who was prescribing up to 1600 pain pills in one day. Another friends brief backed Purdue Pharmaceuticals against pain patients who sued saying the company had hidden some of the risks associated with the drug OxyContin. The APF argued that all pain patients would be harmed if the patients won: the result would be all doctors afraid to prescribe opiate medication for pain patients.

I found that reasoning specious at best.

These are legitimate concerns. Maybe the ties were too close. There was also issue taken with the information they provided, some allegedly out of date or more positive towards narcotic meds then some research might suggest.

But where else would the money come from?

Many of those in chronic intractable pain cannot work, or on disability. We cannot afford to keep them afloat.

Many people do not believe there is a beast called chronic pain. They are not going to pony up.

People give to the cause of, say, cancer or muscular dystrophy because they have heard of these diseases most of their lives. They know cancer can happen to them, or has happened to them or someone they know. Jerry Lewis takes over the TV one weekend every September to raise money for the MDA (Muscular Dystrophy Association).

Celebrities come out to talk about their cancer or that of someone they love, During the telethon celebrities sing, or do a comedy act, or talk forcefully about the lives of those affected by MD.

We do not have that. Paula Abdul came on Dr. Oz. She has RSD. People in the pain world were excited. She will bring attention to our cause, they thought. I did not see the segment but all reports on the pain sites spoke of her ignoring RSD completely during the segment.

The trigeminal neuralgia association (now the facial pain associaion) had Kathryn Crosby (wife of Bing Crosby) as their spokesperson. When she went on TV, representing the TNA, she touted her book about life with Bing. Not a word uttered about trigeminal neuralgia.

What are we to do?

Many of the pain disorders have their own groups. The general pain groups that have given themselves names to imply a countrywide involvement, and do good work, work in only one or two states. As a women in pain awareness representative I have been able to get the Pa. state legislature to proclaim September as Women In Pain Awareness month (WIPA) for the last three years - but that is as far as it goes. Calls and emails to the media were always ignored.

It occurred to me a few days ago that the, I believe APF backed, National Pain Awareness Month, occurring every September, completely misses the mark. Everyone knows about pain, they do not know about chronic pain. I did the same when I requested the WIPA month. It did not occur to me to include the word chronic.

Whether the APF was wrong or not, whether the ties were so big and so close that they could not remain independent, I do not know.

I do know without them our loudest voice has been lost.

We need to find a way to come together and scream until we are heard once again.
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1. http://www.propublica.org/article/the-champion-of-painkillers

Another Aha! moment

Last week the minister said something interesting to me.

After service we stand in line to meet with her and share a greeting. People often stop and tell her about things that are going in on their lives.

She knew that my stimulator had stopped working. Two weeks ago I mentioned that I had an appointment with my neurosurgeon for the following week. She wished me well and I went on my way.

Last week I told her that the surgeon told me that there was nothing more to be done and "It was the end of the line." She responded "Now you will have a life of adventure." I was perplexed. "No." I said. "Now I will have a life of pain."

I thought about what she said. It was far different from the conversations I hear between her and other parishioners, as they talk about their cancers or other illnesses, that have 'real names' like M.S., kidney stones, etc.

If I tell you I have cancer and the doctor has said, "Sorry, this is the end of the line." it has a very definite meaning. The responses, "I'm so sorry." "Is there anything I can do for you?" is the normative. For pain, there is no pro forma reply.

I should no longer be surprised when my pain is apparently confusing to someone or to their decisions in how to react.

It is frustrating, a different form of, not exactly I do not believe in your pain, but of - this is so out of my realm of experience that I have no good response when you tell me you are in pain, or that the doctor says there is nothing more to be done.

It is another Aha! moment. A 'chronic pain is too far apart form what most people know' moment. It is too much to hope for, to expect, the same sense of empathy and understanding that is available for someone with a 'common' illness.

It is another reminder of the need for us to get the word out about chronic pain, to make it a term as common as cancer or many other diseases.

In a future post I intend to write about the demise of the American Pain Foundation . The closing of its doors means that all of us with and in chronic pain have to work that much harder at getting our voices heard. Having a common response to our pain; as a common disorder, having the world know about chronic intractable pain, developing an empathy and compression, is a result devoutly to be wished.

DENIAL IS MY MIDDLE NAME.

The neurosurgical appointment was a little strange. It went from 'We can do this" to "Is it the end of the line?" "Yes."

We talked about taking out the implant and replacing it. I have concerns about that, could there be a risk of brain damage and would insurance cover it?

The implant was 100% experimental. I am not sure how it was paid for or whose, or if, fees were waived. He explained to me it would be considered a 'revision' so there should be no problem getting it paid for. The risk of damage would be negligible.

We talked about if it might be worth redoing the decompression procedures that had been tried by both Dr. Wilson and Dr. Osterholm (not MVD by Jannetta because of the damage from that procedure.) My concern was that being in the same area where all three of them had been could reinjure the facial nerve and I would have the 100% facial paralysis again.

He told me that another neurosurgeon would have to do it, that it is not something he does anymore, and that I would have to have an MRI before anyone would even consider it but I am not able to have an MRI because of the implant which means the implant has to come out.

The longer we talked the more complicated, and ultimately not complicated at all, it became.

He told me he actually could, and would, do a decompression procedure for me if he thought it should be done but he agreed there was too much of a chance of problems because of all the people who had been there already.

Replacing the implant, which seemed a possibility, not one I was sure about - to be sure- probably had a good chance of not helping again. I had already had that experience with the dorsal column stimulator when I lost that to an infection. It had worked 85%. Re-placing it in the exact spot gave me no benefit at all. The current implant could be replaced in the exact spot but that gave no guarantee the benefit would be the same, or happen at all. The suggestion of removing this one, that failed, and putting in a new one was now off the table.

The suggestion by another neurosurgeon, of trying a newer kind of stimulation, peripheral, was a thought. But this neurosurgeon does not do them and could only refer me out to someone in another state.

I questioned if this one, where the wires are placed directly under the skin in the pained area, would be possible since the pain is from anaesthesia dolorosa (a.d.) and the touch is unpleasant in that exact area. That was not the real problem. The problem is that, of course, it would not effect the eye movement and usage pain; but it would also have to be placed around where the a.d. pain is, in the lids, so that it would most probably not get the correct area anyway. Besides no insurance, so far, has been willing to cover it because it is also considered experimental.

He reiterated what everyone has told me, no one knows why you have your eye pain, and there is not much that can be done for phantom pain (a.d.).

Of course something was done, or the implant would not have helped to the degree it did.

"So there is nothing else to be done?" "I'm afraid not." he replied.

That is not an acceptable answer, so I intend to deny it. I will continue to look for some answer. Is that the way to handle it? I am not so sure. On the one hand 30 years + is long enough to finally come to temrs with my reality but it also seems like almost everytime I did, a new idea came along that did help, even if only a little.

Is refusing to give up on the expectation of an answer incompatible with accepting a current reality? It is not. It is a lot easier for me to write and say that the two are not mutually exclusive? It is. Does the fear that the reality invokes make it harder to give up hope? Yes.

At some point I am going to have to stop writing in the occupation box on forms, 'disabled, at present'. At some point, I will have to admit this is real and permanent. I am not ready to do that yet. Is that harmful, to live in the land of denial? That is a question I am not yet ready willing to answer.

AN APPOINTMENT I WOULD RATHER NOT HAVE, A DECISION I WOULD RATHER NOT HAVE TO MAKE.

I have to see the neurosurgeon today. We will talk about the failed stimulator. I feel like I do not know what to do; but I do. I think I just need to have the battery removed, which is not a big deal. Usually they give you at a minimuum a sedative but I convinced the doctor to just give me a shot of novacaine at the site of the battery, leaving me fully awake and aware. It hurt, for sure, especially when he had to pull and yank to get to let loose of the scar tissue to which it had become intimately attached. I would like the wire out too but that might require more then a shot and I want to be able to get off the table and be done with it.

The thought of that sends me into a tizzy: my stomach clutches, my jaw clenches, and all of me cringes.

I do not worry about if there will be discomfort again, the battery is only a year or so old, any attachment it has to be should be minimal. I worry about what happens now? What happens next? And the biggest worry, what if there is no next.

If I do this, that is the end of it. All hope is gone, the implant is essentially gone, even if the chip is still attached to my brain.

Dr. Sharan and I will talk, I have an almost hour ride of the train to think, more, about it, as though it has not been one of my main issues of obsession since it started to fail.

I just did not know how well it had worked. Now that it has been off for a few months, and new and different issues pop up, I am even more light sensitive, the lid swells whenever it wants, which it has always done, only now more and with more discomfort, my eye time has been reduced whenever I do consistent eye work, I want to write this in one fell swoop, but the eye is telling me, do not be an idiot, stop, cme back later. But later feels like too late, because later will be after I amke the choice.

It is not as though I cannot call and cancel if I have a date for the battery removal, but what is the point to keeping it in if I cannot turn it on, Maybe removing it is the best idea if only so I can no longer be tempted to turn it on.

I am frustrated, annoyed, angry,...scared.

I have no noral for this post, today is a post of venting.

WHY DO WE STAY?

From the news: "Dr. Sharad Shripadrao Pandit in Birmingham, England was accused in Coroner's Court this week in an extraordinary case of alleged malpractice. The parents of Alina Sarag reportedly called the GP more than 50 times about his ailing over four-and-a-half months. They testified that Pandit accused them of mollycoddling the girl and said that her symptoms were the result of being "lovesick." She then died for tuberculosis."

It boggles the mind and yet it does not.

How many of us have had the same experience of a doctor repeatedly ignoring our symptoms, and even signs of disorder and possible disease?

I found this article at another site, not medical but legal. The responses were interesting in that many wrote the same reply: Why did they continue with this doctor?

It is a good question, one I have asked myself when I have stayed with a physician who unquestioningly did not have my best interests at heart.

A few years into the trigeminal neuralgia, after the first surgery worked and then failed, my Philadelphia based neuroophthalmologist suggested I see a doctor closer to where I lived, in NYC. I adored my doc but it made sense to leave him.

Unfortunately he did not have a recommendation. I ended up with Dr. Barrett, whose name my mother got from the daughter of an acquaintance of my hers.

The experience with him was awful.

Years later I read his chart notes. "There are days like today when I believe in her pain." He never said that to me and it made no sense: the surgery proved I had trigeminal neuralgia, as did my signs and symptoms. He was erratic, saying things like "If you jump out the window you will only break your ankles because we are on the second floor." in response to absolutely nothing about jumping out a window or hurting myself, or when I commented on his seersucker jacket "I like your coat.", saying "You mean I don't look professional?" I tried to ignore his strangeness, hoping he could help me. I stayed with him, not knowing any other doctors in NYC. Had he said "I think you are a malingerer." or "I don't believe in your pain." I would have gone running back to Dr. Schatz.

After about a year, with no benefit from anything he suggested, I called Dr. Osterholm, the surgeon whose operation had worked. He agreed to redo it. Once I was back in the hospital he changed his mind. "I want you to have a thermocoagulation rhizotomy (killing the nerve with heat) instead. It is less risky." Then he added the killer: "I don't know how to turn on the machine. Dr. Martinez has to do it." I neither liked nor trusted Dr. Martinez but Dr. Osterholm replied to my repeated entreaties "Please can't you do it?" with his mantra "I don't know how to turn on the machine."

Instinct kicked in, as with the above neurologist. Get away, get away quickly. But the pain made me stay. Uncertainty made me stay. Feeling helpless and caught made me stay.

I get why the parents in the story stayed, and tried and tried to get this doctor to respond. They trusted him/they felt ensnared in the feeling of 'this is my doc, how could he not care, how can he hurt me so?'

Too many stories, in our own lives, and in the news. We need to give the docs less power. We need to remind ourselves that ultimately we are in the driver's seat. And with that comes the answer to 'why didn't they call another doctor?' And the courage to pick up the phone and find someone else.