Things we can learn from a dog.

Never pass up the opportunity to go for a joyride.

When loved ones come home always run to greet them.

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

Take naps and stretch before rising.

Never pretend to be something you're not.

Thrive on attention and let people touch you.

Avoiding biting when a simple growl will do.

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

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

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

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

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

Be loyal.

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

Why aren't you volunteering?

"Well, if you say you can't work at least you could volunteer somewhere!".

One of my sisters said this to me. It was a continuation of her disbelief about the level of pain/ if I really had pain. She said this after, I forget, number 3 - 6 of my brain surgeries, done to try and stop the pain. The irony is I got a job 6 weeks after the first surgery worked but never heard a "good for you." "Way to go." etc. (Or a 'sorry' when the pain came back 3 months later.)

I am reading an article from Psych central, an online site.*

The writer, a psychologist who does not have chronic pain, states: "If employment is not possible because of the level of disability, then volunteer work is suggested." What? Why would we be able to do the one when we cannot do the other?

She continues, "chronic pain can be managed. Management usually means that people live with some degree of pain." She is unaware that for many of us 'some degree of pain' is a gigantic and debilitating degree of pain.

If you believe that those with chronic pain can be 'managed' to allow only a modicum of pain then it follows that you believe we can do volunteer work as a substitute for a paid job.

Talk to many of us, that 'some degree of pain" means disability that is not just an inconvenience but a major impediment to living a life. For some of us management means being able to get out of bed in the morning or being able to put on our shoes

If we could do volunteer work we, most probably, can get a paid position.

I think, almost constantly, what can I do in the context of my pain; and if not a paid job then maybe I can do a volunteer one?, but the reason I cannot volunteer is the same as the reason why I cannot get a paid job. I have pain that is disabling.

My father once said to me "I have seen you read, so I know you can read." I explained to him, repeatedly, that I can read, and write, but only for 15 - 20 minutes before the pain becomes so bad it nauseates me. He does not want to hear or believe it. This is, I think, somewhat the author's reasoning.

"Medications are one option,", she writes, "but it is a common misconception that medications cure chronic pain" I do not know who has this misconception, it is not those of us with CIP (chronic intractable pain).

"Most medications for pain dull uncomfortable sensations..."

We look, hope, and dream of a cure; but we also know that the medications we receive, often opiates, may 'dull' the pain - if we are lucky. They also make us feel awful, cloudy of thought, tired, and slowed in thought and movement: neither fun nor sensations to be wished. And how do you work when you feel like this, even forgetting the addition of the pain?

And, I am sorry, but to equate "uncomfortable sensations" to chronic intractable pain is a gigantic miscomprehension of what CIP is, as opposed to the pain of say a sprained wrist or a slight arthritis (as opposed to severe and disabling) of a finger or toe.

Only someone who does not have pain, like the sister, my father, or the article's author, can think this way.

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* http://blogs.psychcentral.com/aging/2011/08/medical-limits-chronic-pain-syndrome/

Feeling the weight of suspicion.

I went to the pharmacy the other day. As long as I was there I decided to see if I had any medication refills ready for pick up.

The last time I was there there was a codeine prescription still available for refill. I also had a new 6 month script from my doc. I asked the technician to put it on file, as they always have done.

I returned in a month and went to the counter. "I'd like to have the codeine refilled (along with 2 other non narcotic prescriptions.)" The woman could not find them in her computer. "It was put in the file." "Okay, no problem. Let me check." She picked up a rolodex type file and thumbed through it. "No. I'm sorry, nothing here."

I was becoming anxious. I knew they had it. I had never lost a script or needed a replacement - for any reason - ever. In addition, I had just left my pain doc,(on very good terms), because all he could do for me was write for the codeine (and an anticonvulsant, taken for the pain). He felt my family doc could do it just as easily plus the family doc was 10 minutes away. My pain doc was an hour away. I knew he would have no problem if another script had to be written but I felt uncomfortable with that because I had just ended the relationship. I could not ask my family doc to do it, he had just agreed to start writing for it. This would look...bad.

I knew I had done nothing wrong. I knew they had it on file. I waited while she looked again, no luck. I waited, my nerves on end. Was I going to be considered a druggie, someone just trying to get over on the system by getting a second script? Was I selling it, was I taking too many? No. None of those.

All the articles on pain patients being addicted, selling their meds, giving them away, making us the bad guys in the 'war on drugs' when we are not, had taken an unconscious toll on me.

"Oh I'm sorry. Here it is." In a second I went from feeling like I was going to get caught doing something wrong, even though I knew I had not, to feeling free again.

My friend just told me a similar story; only in hers the pharmacist yelled at her so the whole store could hear. "You are 2 days early! These are narcotics. You cannot have them yet. You have done this before, In March (5 months ago) you got them 2 days early and in another month you got them one day early." "Please call the doctor then if you have a problem with the prescription." "No." he barked at her, "the doctor does not decide these things. I do." As she was leaving he yelled after her "You can always try to get them at another drug store." She left the store feeling humiliated, embarrassed, and (falsely) accused.

She called me, very upset. "What did people think when he was yelling this at me? They must have thought I was trying to pull one over, maybe even doing something illegal, at the least being a 'druggie'." She was devastated. And what was her crime? Trying to get her prescription filled, something almost everyone does at one time or another - without hassle or repercussion.

Why then can't we be treated the same as the one who gets insulin or heart medication? What is our crime? Nothing, other than trying to get the medication that helps get us through the minute, the hour, the day.

Neither one of us, or any pain patient, should be made to feel embarrassed, humiliated or criminal, merely because we have a medication that carries the definition of opiate.

What is 'brave'?

"You are so brave." someone says, a stranger or even a friend or loved one as they learn what you have or are going through.

Are you brave because you fight the pain? Is your 'courage' in the struggle to get through each day or in going through procedure and treatment after procedure and treatmant?

I read what so many have to say about their experience of living with chronic pain. From many of them, from their stories, I think the bravery is in saying "I can't", "today the pain is bad." "I will try despite the pain." Sometimes it takes courage to say the truth.

I know that I am not the only person with pain who has been ridiculed and criticized for saying "I can't"

One sister said to me "I don't understand why you don't volunteer at least." If I could do volunteer work, I could do paid work. And I want to do paid work. It would give me a place to go, people to see, things to do. And a paycheck. It would give me a sense of purpose.

Actually I do volunteer. Once every 2 - 3 weeks I take food to an elderly woman. Although I am only required to leave the food and leave, I stay for an hour or so. We share confidences. We have a relationship, even when she introduces me to people as "the lady who brings me food."

I love doing it, and yet I often cringe when I know today is the day. It is just picking up meals at a church and schmoozing. How bad is that?

Sometimes pretty bad.

I use my eyes to pick out the foods I want to take her. Then I use my eyes when I talk with her, especially because sometimes she is a handtalker. The movement of the hands sets off the eyepain. Sitting with her is usually a codeine time. One lady, one hour, one codeine.

I do not tell her: I tell no one that this is hard for me. Sitting with someone and talking. Ah, come on... Who would believe it? Often even I do not believe it.

Am I brave because I do it? Am I brave because the fight continues minute by minute, hour by hour, day by day? Am I brave because I stay home knowing that a simple trip just to the store, using my eyes to look at the items, will cause the pain?

Often I see it as a coward's act. Just bite the bullet, for crying out loud. It is a trip to the store or to see Angie, or to go to church or sing in the choir. Your life is so empty and lonely only because of your fear. Everything is colored by the worry. What if (whatever I try to do) makes the pain so bad I have to be overdosed, in pain and narcotic headed?

I think about trying to volunteer, something like being a 'pink lady' in a hospital. I used to be a candystripper, a gazillion years ago, way before the pain. This would be taking water or flowers to patient rooms. That means reading, looking for the room number, talking to the patient. Could I do that? Would they let me work for only an hour? And would I be even more discouraged if I found out something even that simple was beyond me?

Is it cowardice to let the fear of the pain and the fear of failure because of the pain take control?

Is it bravery, or foolhardiness, to try?

Ben's friends is no friend of mine.

I woke up this morning obsessing after falling asleep to the same thoughts. Going through my email this morning I found 2 emails sent to me by the admiinistrator of this Ben's friends group, Living with TN. I read them, and responded. What she wrote so upset me that I am still shaking. The posting today is my sounding board and catharsis (I hope.).

I was 'suspended" and accused of spamming and harassment because I asked to have my book listed as an external link to their article they put on Wiki about atypical facial pain. I say accused because when asked to provide proof of either/both she could provide none.

She told me they had "unearthed" my blog. They, she and'other administrators, although only one other named in one of the emails she sent) had decided that my mention of it was an 'advert' for the book. I assume this was her basis for the 'spamming' complaint. The only problem was they obviously never bothered to look further to see that the blog name is not the same as the book and this blog has nothing to do with the book.

She had no basis for the 'harassment". Instead she wrote me an email- to my personal address- her fourth, to tell me if I replied it would be considered 'harassment' since I had already sent 3 emails(I could only find 2) to the administrators of the site. All were in direct reply to her email but she wanted to find an excuse after the fact for the "permanent" suspension. (She put permanent in her email. The site notification merely said 'suspended".)

Once again, and I did write a short post earlier when this first happened, it appears it has to do with the book.

Want to know what it is like to live with this pain, day after day, and to fight this pain, day after day? My book does that. The author of the article is a researcher of research. Interestingly Stef, the administrator who wrote me, did 2 things: she defended the author of the article in her email for some unknown reason and said part of their agenda was to erase the idea that atypical facial pain is not psychosomatic; but a large portion of the article seemed to indicate to the reader unfamiliar, and familiar, with the pain, that this is a psychosomtic disorder and not physical.

It is bad enough that I have to live the pained life. It is bad enough that I have to fight the pain every day, like so many of us. Support sites should be support sites for the members not for an agenda.

Stef indicated she had not read the book or checked out the excerpt. This is not a book on how much fun it is to live like this. I lay bare the most intimate parts of my life so the reader can feel the pain we go through living like this. "Red", the researcher of the research and author of the article had mentioned in one of his posts at the site that he was not looking for 'self-aggrandizement'. It appeared to be pointed at me. If I wanted to self-aggrandize the book would not read the way it does. I would have made myself the hero.

Stef told me I could not have the diagnoses I do: trigeminal, atypical trigeminal neuralgia, and facial pain. "You cannot have all three." She ascknowledged she is not a doctor, I do not even know if she is a medical person, but I informed her those were my diagnoses by neurologists,etc. It was telling she never replied to that information.

I am tired of people lying about me. Ben's friends is no friend of mine when they work to add to my pain rather than try, through the support they purport to offer, to help diminish it.

Battiness.

There was a bat in my bedroom the other night. I ran out of the room slamming the door behind me. I stood outside trying to figure out what to do. I silently opened the door a smidgen to check and make sure I had seen what I thought I saw. I had. What am I going to do!

Finally I recalled that people hit them with brooms so I went downstairs and got the broom. Steeling myself to do battle I opened the door and it was not where I had last seen it, circling around the light fixture directly above my bed.

I noticed one of my cats was kind of looking up at a curtain. I snuck a peek and saw the bat. SWACK! I swung and hit it. It fell onto my bed. THAWCK! I banged down the weight of the broom hard onto the back of the bat. It moved then fell onto the floor. WHACK! I hit it once. I hit it twice. It had to be dead.

I looked down and it was gone.

I took the flashlight and gingerly looked under the bed. It was not there. Oh No! Where the heck was it?

I upturned the mattress and then overturned the boxspring. It was nowhere to be found. On the slight chance it had been somehow able to maneuver itself around for a while (But how could it? I must have killed it!) I moved the bureau very slightly away from the wall.

And saw the movement of a wing.

BANG! I pushed the bureau back hard against the wall. It had to have been squished (Eeeeew.) but I was not going to chance it. I would wait until tomorrow.

Wait, there's a can of bugspray right on top of the bureau.

I must have at least hurt it. I hated the darn thing but did want it to suffer. I know, "I'll poison it too" I announced to the room. And then, just for good measure I got some baking soda. If I throw that at it, if I did not kill it with the broom and the poison does not do the job, then the poor thing will asphyxiate. One way or the other this bat was a dead duck.

I slept on the sofa downstairs the idea of the bat just too....ick. The next morning I tried to get myself together enough to get it out from behind the bureau and into the trash. I was standing in front of the bureau with the broom and a long handled dustpan. I was ready. And then I couldn't. I just couldn't!

I went into the den to do some work. The room was next to the bedroom but that was far enough away so that I was not worried about that poor dead bat.

I was on the phone with a friend when, all of the sudden, I see this Thing flying around the fan in the center of the room.

"Oh my G-d!" I screamed into the phone and threw down the entire phone, ran out of the room and slammed the door behind me. Once I gathered my wits I called my friend back and explained what had happened. Either it was the same bat or worse still, it was another one!

She suggested I call the police and they actually came. That officer was no more a fan of bats than was I but he bravely looked for it. And could not find it. Kindly he offered to come back if I saw it again.

The next morning I called an animal control company. He came to the house and after spending almost 25 minutes in the den came downstairs holding up a black plastic garbage bag. "Got it." he said proudly. "Is it alive?" I asked, my disgust quotient almost off the yecch meter. "Oh yes."

Man. What did it take to kill these things? I had just heard they were on the verge of extinction but when it is in your house suddenly the ecosystem becomes a lot less important.

It occurred to me that this is a lot like dealing with pain. You can throw everything possible at it and it is still there. You can be worried about what the treatments are doing to your body, your personal ecosystem, but not be able to give up.

I guess there is no good answer. Much easier just to have a bat and let the animal control guy get rid of it for you.

Dr. Jannetta still rules or I was suspended from a support site, apparently because of my book.

To put a period on the posts about the lawsuit I was going to write on the lifelong effects as a result of the lawsuit and the malpractice.

Funny thing is - today I found out that once more the book has apparently gotten me in trouble.

An article in Wiki on atypical trigeminal neuralgia was written a by a moderator (I believe that is his position, I cannot get into site to verify it) of the group Trigeminal Neuralgia (TN) - Online Support Group

I was given neither notice nor explanation. My last comment on the atypical trigeminal thread suggested that my book be linken in the article external link section since it is the only one ever written on living with and fighting against trigeminal neuralgia.

I had added it myself and it was removed by Wiki, I think because they decided it was self - promotion, despite it's relation to the subject. That was fine; however someone else then linked it only to find that the link had again been removed. This was after I had mentioned to the article's author that I thought the book would be a good adjunct to the article.

Did he remove the link? I think he is able to do that but I have no way to know. Did he have me removed from the group? This suspicion has a better grounding for that possibility.

How far will people go to protect Peter Jannetta from something that is not even written in the book?

The question arises, with his background, surgery named after him, sec't of health for Pa. etc, why does he need to be wrapped in cotton and the bad truths about him wiped away by suspending people and banning a book?

The pen is mightier than the sword. He killed my life and my looks with his sword. I did not think, in fact I know, my pen is not equally powerful.