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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Thursday, March 31, 2011

A new Battery has me revved and ready to go

The surgery to change the battery went well.

It was typical. I had to be there at 9 for a hoped for 11 a.m. OR time. I got to the OR at 3, it took maybe 20 minutes and yet I was not released until 7 p.m.

They insisted someone come with me and take me home. I was so very lucky that a gentleman from the church agreed and was not annoyed at the amount of time involved. (Thank you so much Bob.)

I was amazed at how it was done with all preparations to go ahead with anaesthesia. The anaesthesiologist was there. I was IV'ed, monitored, oxygen hose hooked up to my nose.

It was a shot of novacaine, nothing different than being in the E.R. to get a cut sutured. Such a big deal over not much.

I thought other patients also asked for just the shot. I was very surprised to find out it was only me.

Suddenly I understood the need for all the preparations. They were afraid that I might yell out in the middle of it all "Put me out!! Put me out!! I did not.

It hurt, for sure, but a shot of anaesthetic always does. I did not anticipate the battery being stuck. Dr. Sharon, the surgeon, had to yank and pull it out of the skin pouch. My face was covered, a nurse checking every once in a while to make sure I had some air to breathe, so I could not see. I wonder if I could have watched would he have had one foot against the bottom of the litter, one on the floor and a pair or pliers to help wrench it out? I have to admit that did hurt, a lot. Then it was out and the pain was over.

Today, 2 days later, it hurts if I move my arm a certain way (well then don't move it like that as the joke goes) and the area where the new one now sits is sore but that should be gone quickly.

I was a little afraid to change the way the implant works, making the settings stronger. But as always, impatience got the best of me and I turned up a little more.

I am keeping my fingers crossed.

Monday, March 28, 2011

Getting my battery changed tomorrow (no, not the one you think)

I was talking with someone Sunday about possibly doing something tomorrow (Tuesday). I said I could not, "I'm getting my battery changed." They looked at me a little quizzically - as though asking 'why would that take all day?'

"Oh, whoops." I was not used to having to talk about my medical stuff but there was no way out of it this time.

"I mean the battery for my brain implant."

It was nice that Mike* (pseudonym) and I knew each other enough that I did not have to make the long drawn out explanation of what an implant was, why I had it, and all that entails. As those with chronic pain it is not that often that we can say trigeminal neuralgia, RSD, even fibromyalgia (a little more well-known) or other pain names without having to go into what are sometimes, or at least feel like, excruciatingly long and detailed explanations. (Although I will in a future post)

The batteries usually last about 5-7 years but mine has been in for 10. The last time it was changed, and my memory may be a little off but not by much, despite having to go to the OR, for the sterility of the room, I stayed in my street clothes. I walked to the room, hopped on the table, Dr. Barolat gave me a shot of novacaine to numb the area, he popped out the old battery, popped in the new, sewed me up and I hopped back down off the table.

Not so this time. I had to get anaesthesia clearance, and cardiology clearance, and blood work, and x-rays. Tomorrow they will put in an IV and hook me up to monitors. An anaesthesiologist will be standing by 'just in case'.

The short procedure does not make me nervous or anxious. All this rigamarole surrounding it is what has me eating antacids. I kept saying to everyone I had to talk with "But it is just a shot of novacaine for goodness sakes!"

Writing has never been cathartic for me but writing this has made me feel a little better about tomorrow.

Talk to you later, new battery and all. ((*_*))

Friday, March 25, 2011

Life - 20% what happens to you, 80% what you do about it. How do your numbers fall?

Just watching a TV show and one of the people said, forget who he said said it first, "Life is 20% what happens to you and 80% what you do about it."

I do not know about that.

Certainly what you do about the things that happen to you is ultimately what makes the difference in how you view not only what happened but often life itself.

Sometimes you let things sweep over you, carrying you away with the intensity of it.

Other times you see the tidalwave coming and are able to head it off.

I think about things that I should have done or wished I had done when circumstances were in my control but I was not aware at the time that they were.

I talk to my friend on the phone. "You know I should have sued him, I should never have let it go that far, I should have written the letter or made the phone call." And then I give the excuses, the ones that seemed so legitimate and real at the time. They were true. The pain had me virtually housebound, using my eyes was a source of intense and increased pain, I was by myself with no one to give me advice or guidance.

In retrospect I wish I could have seen past the events to the impact they might, could, and ultimately did, have on my life. But hindsight is 20/20, a cliche that rings very true for me.

Do I learn from this?

My life was ruined by many things that happened. Abuse as a child, medical malpractice that paralyzed half my face and left lifelong additional medical problems, a birth defect that caused the pain in the first place, fears and worries that stopped me from dating and having a relationship. The list goes on and on. I look at the list and the realization hits me. I let my life become 80% what happened and 20% what I did about it.

I was very proactive about trying to stop the pain. I tried all sorts of medications, even opium and methadone. I agreed to surgeries that were scary without anyone there to help me get through them, some with potentially frightful dangers. I had to relearn to walk after one, to connect myself up to IV antibiotics after another, to convince a neurosurgeon that his procedure was right for me, to in all instances fight and stand up for myself.

Yet I let my family be nasty to me, tell lies about me. I let people I thought were my friends take advantage of me and then turn around and hurt me deeply. I let these hurts stay with me. I lick my wounds less but the scars linger, scabs that I continue to pick at, less and less, but pick at nonetheless.

It comes down to the decision. In which direction do I let the numbers fall?
It takes work, bringing them down little by little. I am getting closer to maybe 40/60. 60% choosing the response and behaviors to the 40% what happened.

It's a start.

Wednesday, March 23, 2011

Pain always takes precedence no matter what else is happening.

I had a surgery called a trigeminal tractotomy in 1980. They cut the nerve as close to the brain stem as possible. To get to the brain they had to do a laminectomy, cut the bone to make an entryway.

For many, many years after the surgery I had neck pain. I just assumed that, because of that operation and then 2 implants and removal of them in the same area, what else would you have but a lasting pain in the neck?

I would often mention it to my neurosurgeon but it was usually just a passing thing. The answer if there was one was something along the lines of I am not surprised or is it really bad? It was bad but really bad? No just really annoying. As time went by I found it was also becoming exhausting to hold my head up.

I was in the elevator one day with two friends who were both big folks. Stan is about 6'3 and his wife, maybe 5'4 or 5 (to someone 5'2 that feels tall.)

I said to them "You know I swear you guys are getting taller." Ann replied, "We've been thinking you're getting shorter." That was the camel that broke the back for me.

I saw my neurosurgeon at my next scheduled visit. "I think I am getting shorter and my neck is just exhausting me." He pulled out some neck x-rays he had. "Dr. (so and so) has been concerned about this for a long time." he said. "I am going to call the orthopedic surgeon. I want him to see you right away."

About 20 minutes later I was in his office. As soon as he saw me and the x-rays he said "You have to be operated on this week. You could be paralyzed just walking down the street." He pointed to the films. Instead of a straight neck, I saw an inverted V. My neck was literally falling down.

It took a month to get the 3 surgeons involved to get their schedules to coordinate.

I went to the OR where I was to get clamps placed in the front and back of my neck, from the first cervical vertebrae to the 5th. These would be held in place with 12 screws. It would be a long operation, all done at once. Unless....

Something went wrong in the OR. I am still not exactly sure what but they had to stop after putting in the clamp in the back. The major surgeon as well as residents and others told me "If you stand up you will be paralyzed and you will die. The other clamp has to be in for your neck to be stable. Without it is dangerous for you to stand or even sit up in bed.

That is a long story. It almost gets me to my point.

Another doctor came in my room one day. He was discussing with me and some residents how they could stabilize my neck so it would be safe until the second operation. A "Halo" (That monstrosity you sometimes see with people with neck injuries. It is a metal contraption that screws into the skull and is worn from the neck on up to the top of or slightly above the scalp.) was mentioned, as an option not appropriate.

"Why couldn't we do a halo?" I said

"As I explained it isn't right for your situation."

"But it would be a good idea. I have a theory."

"What is your theory?" I was very surprised he asked but also very glad.

"Well. If we do the halo we have to screw it into my skull. That would trigger my pain but then after a while the pain would plateau. By the time you took the halo out and off maybe the pain would have plateaued out and be gone."

Typical, I learned later, of someone with chronic intractable pain.

We were talking about how to keep my neck, and me, safe from this very dangerous neck situation. That should have been my area of concern. But nothing trumps ways to try and stop the pain.

We did not go with the halo. My feeling was the doctor thought my suggestion was somewhat outrageous. It was - for anyone who does not live with horrendous unremitting pain.

For us, what may seem crazy in a normal context is normal even when the context itself (in my case possibly dying because I stood up) is crazy.

Saturday, March 19, 2011

Hmmm, do I go negative or positive today?

The good stuff comes as you read further on:

I had some unsettling news yesterday when I went to the doctor to get clearance to have my battery changed. The battery runs my brain implant and it is dying. They let you have anaesthesia or sedation but I just want a local shot of Novocaine. Numb me up, pop the old one out and pop the new one in. Easy as pie. It should be pure simplicity but no, they make you go through all the steps, x-rays, blood work, anaesthesia clearance by an anaesthesiology resident, and EKG. The cardiologist saw my ekg and refused to clear me for the surgery. There is an issue. I have to have a 3-4 hour stress test next week and an echocardiogram. It does not make me a happy camper. I am somewhat worried (not a lot because I have never had a 'normal' ekg and each time the abnormality has been different.) because I am afraid it will hold up the surgery. I want the battery changed. I am noticing that there is a difference in my pain level as it dies more and more.

I bought a house and it turns out it is a lemon. This has me very worried.

I woke up today in a bad mood, worried and annoyed. Annoyed because the weekends are always harder on me. When pain dictates your day you need things to do and there is more to do on the weekday. If not, there is a TV schedule you can live by. Weekends puts me at loose ends.

About an hour ago I remembered that there is a meeting I can go to. It is a psychic group that meets once a month at the local library.
I, like I think almost everyone, have had my 'twilight zone' experiences but I do not believe a lot of what they talk about. Sometimes I enjoy it and wonder if the subject for the day is real. More often I feel like a fraud, like Randy the debunker. I keep quiet but inside my thoughts are not always generous.

So, Do I go to the meeting?

I am alone, I have no family - that is for another post. My friends, absent 2, do not live near me. They would have no interest in a group like this anyway. I sometimes drown in the feelings of aloneness and loneliness the feeling is so deep and dark. Somedays I scream in my mind, please I need somebody and want somebody in my life who needs me too. But today is not a screaming day, just a man, I have got to find something to do today.

I decide to go. What good does it do for me to dwell on the problems that weigh heavily on me?

Let's see -

if I stay home all I can do is chew on the bad things, fret and feel the agita and anxiety these thoughts bring with them.

If I go to the meeting I may listen to something that is not exactly my cup of tea. Today's subject is telepathy. It could be interesting.
A lot of folks come and I have yet to meet one I do not like. Afterwards we go to a restaurant and just hang.
Yes, it will cause me pain, no doubt. Yes, I will have to take the codeine and feel not 100% present. Yes, I will be out in the world, I will be with others, and I will even get some pizza, maybe.

It is always a choice. The pain may not let us choose when we have it. It may be the boss of us when it decides, no, I am too bad now. I will neither let you do what you want nor will I let you forget I am here, But I can choose to be the boss of my life.
I choose today to go to the meeting. I choose to tell the pain, heck, no, I am taking charge today.

Maybe, if I learn enough today, I can send you this post telepathically.

Friday, March 18, 2011

Bra shoulder valleys and why it made me think of how I relate to my pain.

I saw an ad on TV about bras and the crevices many women get when the straps bite into their shoulders.

It reminded me of when I had gained weight. Like many women, (sorry men but this may be TMI - too much information) I tended to gain in my chest area.

It did not matter that the valleys in my shoulders got wider and deeper as my undergarment got tighter and tighter. No matter what, I was not going to acknowledge the weight gain. The best way to do that was by refusing to admit I needed a larger size. Wearing it meant pain in my back and around my chest where the bottom part bit into me. It made it a little harder to breathe as there was no good room for my ribs to expand. It meant my shoulder gulleys turned red, then redder becoming chaffed and sore. Undaunted I swore it was still the right size for me.

What does this have to do with my pain you may well ask.

I am boneheaded about that as well.

I refuse to accept the aspects of it that have been with me for over 30 years. I honestly awaken each day thinking "I no longer have the pain, I know that is the case." And then I use my eyes, even just to look over at the clock. "Oh no, it is still there. How can that be??"

When the pain gets bad, if I use the computer or go to a store and actually look at a lot of items, or go to choir rehearsal or church, I have to take my codeine. It is a lot less than I used to take, a major reason because the face pain itself is gone but also because I have consciously, and more often I think unconsciously, stopped doing things that will cause me to need the codeine. Nevertheless I fight taking it. I think of it as 'giving in'.

But it is not a surrender, it is using what is available to try and make the pain a little less 'there'.

It would be nice to have a tidy ending to this writing; that I get it and no longer refuse to acknowledge my reality.

I wear sports bras now. You don't have to deal with the size as much with them. So a pound here, a pound there and I can still pretend without all the messy side effects of a too tight garment.

An eye movement here, too much eye usage there though and I still fight it. I can read a little longer - just another page maybe, but by then it is too late. The pain that was manageable a page ago has gotten out of hand. Instead of 'giving in' the page before, and waiting 20 minutes, maybe a half hour for the pain to go back down so I can use the eye again the pain is unmanageable. Now I have to give up and take a codeine. Now I have to wait sometimes for up to 2 hours before the pain has calmed down again enough to use my eye.

I talk with others in chronic pain, read what they write and see that I am not alone in this reluctance to acknowledge the pain as a part of my life that is not going to magically disappear.

How deep does the crevice and pain have to become before it must be seen as real? At what point must I accept it? I guess maybe the real question becomes must I accept it? And if the answer is yes, why can't, or won't I?


I was at choir rehearsal the other night. It is very hard for me to be there. Reading music is the one thing I know for sure is pain producing. As I write that sentence my stomach clutches. I do not like to talk about my pain, I do not like to admit I have the pain or that I cannot do something. During the day I can control my eye usage. If I am here, at home, I can stop before the pain gets bad and yet...I still, even after 30 years, tell myself 'just a little bit more' and then I am in trouble. It takes longer to get over the pain and requires the codeine. Rehearsal lasts about an hour or a little more. I take half a tablet of the codeine when I am at home, if I need it at all. No eye usage or a little I can get away without any.
Choir rehearsal, though, is a full tablet within one hour. The eye pain is bad, very bad, within a few minutes of constant eye usage. My lids swell as the face moves when I sing. The paralysis has made the left side of my face very tight and that aggravates everything painful and discomforting. My mouth gets dry and I get a codeine headache. That makes it harder to sing, harder to pay attention. I have the reputation of being 'scattered'. True, I am not the most organized person but at church, during services when we sing, I take more codeine; I become scattered as the codeine fuzzies up my mind.
One or two people know about the pain but no one else. I sometimes wonder - should I tell them if it seems like the right time? I do not know. Is it worth it? The person I do tell seems like it is of no concern other than for the moment. They are all nice people but telling still seems like a risk.

The last church I was in the choir was maybe 12 people. Instead of rows we sit around a table.
At that time my pain was much worse and I was on a lot of medication, sometimes up to 5 codeine in an hour.
I was so happy to finally be a part of something. But, it had been so long since I was (without family or work I lost a lot of the idea of how the world and supportive people behave.) it never occurred to me to say anything. I did not want to be seen as different. (Of course the facial paralysis immediately made ad makes me different but I always keep my fingers crossed it will be ignored.)
My pain behavior is to withdraw. Normally talkative, people can tell you, sometimes very, very talkative, I shut down, sometimes completely.It was the 4th or 5th rehearsal when another member looked at me, concern in her eyes. "Did we do something to offend you? You seem really angry with us. "I had no idea that was how it might look to someone. I had no choice, I had to explain. And it, and I, was accepted immediately. (Later things changed but that is another story.)I think the bottom line is I am not sure when to disclose or to whom. I fear people will either say 'so what' or care too much. I fear giving them the chance to do either.My family has been awful about the pain. Nasty things have been said, not one of my siblings was there for any of my 12 brain surgeries. I was badmouthed to their friends and worse still to their children.My parents were not much better. If I said "My face hurts" when the pain was bad my mother often responded "Well, it's killing me." My father insisted it was psychological even after it was verified from surgery and my neuroophthalmologist showed him the texts and drew diagrams.I learned my lesson well. Keep your mouth shut. Don't admit to the pain. Don't say "I can't" or 'can you close the window so the breeze doesn't hit my face' or 'Could you blow out the candle because the movement of the flame hurts my eye'.The funny thing is I actually seem to look better when the pain is bad. For some reason the left eye is usually slightly closed, the lids very swollen. When the pain is bad though the eye seems to open wider (maybe in surprise?) and people say "You look really good, you must be feeling well." I smile in frustration. "Yes. Thank you." Should I say well no, actually I am in a lot of pain now? They are being nice. Is it right to set them straight so they feel bad and feel they said the wrong thing. Does it make me feel any better?I realize I am writing in free fall, saying more than I intended. Maybe after 30 + years it is time to come clean, to open up, to say what I have kept hidden all this time.Maybe the time is now to open up about the pain. Maybe that is the way to learn to accept it. Hiding is an interesting thing. It keeps the pain and my feelings locked up inside me but it also locks out the people who want to be let in.