Celebrating what's left.

I read a post from one of the members of the women in pain awareness group (https://www.facebook.com/#!/groups/111961795481256/ )and she reminded me of something very important; something I think many of us tend to overlook, even those not in pain. For me, it is a constant that I forget rather then remember.

I have lost a lot. My dreams, my hopes, my life as I once thought it would be.

I sometimes look in the mirror and am surprised. Who is that older women? I am supposed to be 26 still; my hair long and dark, face smooth, eyes sparkling -'bedroom eyes' Bill, my castmate from "HELLO DOLLY" called them; a mouth with the tiny smile that reads expectation and options.

I awaken in the morning and think. What is there to do today? Usually nothing, or maybe an errand or two. Is it a good morning and the eye is not swollen yet, the pain quiescent? Or am I already behind, the pain having the upper hand?

I go to the computer and start reading email. It is too much for my eye. I want to stop but what else is there to do? Who else is there, the writers often unknownst to me but still people with whom I am having a 'conversation'. It is someone, a way out of the alone, and when it is from another person in pain, someone who 'gets' it.

But even that is fraught with the loss. I don't want to have a medical issue in common, much less pain, I want to talk politics and cooking, and theater, and, well, almost anything else.

I am working on my greeting card line to get them ready for an Etsy store. That makes me happy, when I think of a joke or an illustration I can do. I get scared and upset when I take the thought further. What if I can't succeed at this? What if it is too much for my eye - to get items ready to mail out, to address the envelopes or boxes?

My fantasy is that when this is over, because it will be, because the pain will be gone, (I know it is only a fantasy but then you never know.) I will be 26 and have the life still before me I had envisioned when I moved to NYC. I will act, I will sing, I will continue with the friends I made, going out for lunch, watching parades, eating at each other's homes, just 'hangin'.

When I look at it that way there is nothing to celebrate, it is all loss and fear and can'ts.

But I can write the jokes and words for the cards. I can draw the pictures (not good but cartoony enough that they fit). Because of the Miracle I can go outside anytime I want, letting the breeze and leaves, and snow fall on my face, turn my face right into the wind, and not be in pain.

One surgery left so much damage in my neck that I have the 2 clamps and 12 pins holding it up. But, as the orthopedic surgeon told me, "You could have become paralyzed just walking down the street."

But I can walk, and breathe, and my body can do almost everything I want it to do and it can do all it needs to do. I am not as completely alone as it feels - because there is no one to touch and feel right here, right in front of me, but I do have my friend in New York and we talk almost every day, I do have my nephew, we email almost every day. It is more than many have.

I have a roof over my head, I am not destitute. One day I may be living on the edge, because of my financial situation but that is not today. Today it is okay.

So. I have a choice. Is my thinking going to be a broken record and keep repeating: the pain, the pain, the can't, the don't, the fear? Or will it play a new song - yes the pain will be there, it will get worse. I will have to stop; but right now, for this moment, for this few moments, this half hour, this hour, I am okay and it is a good feeling. Hold onto it and maybe even through the pain the celebration of the have will play on.

Necks.

As I sit in choir, stand behind someone at the cashier's line, let someone get in front of me at a redlight I cannot help but look at their necks.

Almost all are pristine, not a scar to be seen, maybe a line of two of age but nothing...egregious. Not like mine.

The back of my neck has seen a lot of scalpels. In 1980, entering through the nape of my neck, Dr. Hosobuchi tried to cut the trigeminal nerve at it's root. For a few years it took away the spontaneous pains but a lot of the TN remained. Once it completely failed, a few years later - back to the drawing board.

The next surgery was the first dorsal column stimulator implant. It was placed in the same area where Dr. Hosobuchi had been, and a new scar was born. It became infected a few months later. Dr. Barolat removed it but the knifeprint remained and a new one added. The next dorsal column stimulator was placed in the same area, a new scar posted. Then it was removed, another knifeprint heard from.

The back of my neck has a wide ribbon of white where all those hands entered and departed. I hate that I have it. I am jealous when I look at those other necks.

And yet.

And yet a part of me wants it to be seen; hoping that maybe my story reads there and people who see it will have a better idea of what I have been through, what has happened to me. Probably not. Probably more of a 'geesh, will you look at that?" if it is noticed at all.

The other side of that is the hope, ridiculous in it's thought, that a doctor will be walking behind me. He will be close enough to see it. "Miss, Miss." He calls after me. "I saw your scar. I know what you have. I know how to fix it." One of those nonsensical fantasmagorical figments of imagination: the delusion of hope, the killer of the 'this is forever' fear.

We all have so many scars, internal and external. They have so many meanings, a hope here, a hate there, our lives laid out, and played out, in indelible lines.

The what-ifs?

I wish I had a magic wand to stop my mind from going to the what-ifs about the problem with my implant.

I try not to think of the options but there is almost none that is a good one, absent it turning out to be nothing, but that is no answer - for I know something is not right.

So. Okay. Something is wrong. What happens next?

I can leave it as is.

That's no good. By going bad it proved it was doing good. I still could not work, the pain still got in the way of using my eye for any long period of time, I still was disabled, but it did give me, 5 maybe 10 minutes longer of eye usage before the nausea from pain set in.

I can have them take it out.

Ugh. It is attached to the covering of my brain and encased in scar tissue (I assume). After 20 years it will be hard to take out (or is it 'off') of my brain. Is there the potential for damage? Who knows?

The first implant, a dorsal column stimulator, worked wonderfully well. All the touch pain was gone. It was marvelous. And then I lost it to an infection.

Dr. Barolat removed it with no damage but 1) it was in my neck and 2) it was removed only after 7 months. It was not really enough time to get attached to me - even though, because it worked, I was very attached to it.

The next one did not work, at all. Was that because it was not in the exact same spot? There was no way to know. If they took this out could they get it back in the exact same place so it would still help? Who knows?

I think I have mentioned that this implant is 100% experimental. I am not sure what amount insurance paid towards the surgery. I believe the hospital picked up some of the cost.

The local neurosurgeon told me he did not think I could have it replaced. Insurance would never pay for it because it is experimental.

There are so many ways this could turn out. It appears almost none of them are good outcomes.

The best that could happen is that they decide there is nothing wrong with it - but because of the horrid sensation that started this course of turning it down and down and down, to now being on only 1 minute per hour at the lowest level of stimulation, I am afraid I would remain afraid to turn it up higher.

"Don't anticipate." "Be in the here and now." I know that is the best way to deal with this. I just wish my mind would heed that advice.

Bizarroworld. (Saw the company rep.)

I went to the neurosurgeon's office yesterday for the appointment, mostly to meet with the representative from the company that makes the implant.

Right now I do not feel like writing much about it and, truth to tell, there is not much to say, at least for now. It is also hard to wrote about because it requires a lot of explanation for many of the steps that were taken.

It appears that something is wrong with the unit but the information that the main computer is giving does not make sense.

It looks like my company rep will have to contact an engineer at the company to see if they can explain what right now is making no sense. (On the one hand I am having the errant sensations from the implant but on the other hand the main computer is indicating that there is a break in a wire somewhere which means I should not be feeling any stimulation at all.).

It is a bizarreness that has to wait for the end of this chapter to be written.

Bummer.

Fear and hope.

Tomorrow I go to the neurosurg about my stimulator.

As I wrote a few weeks back I had to turn down the strength level of my brain implant because of a 'tic', one I always assumed was from my anaesthesia dolorosa (phantom pain).

It started where it usually did, at the tip of my left nostril but then it grew and grew, turning into tingling and spider webby, going up to my scalp and down to my chin, and harsh, very, very harsh.

I have it on now at the lowest level of stimulation possible. I have changed the amount of time it comes on so it now is on half a minute every 2 hours, or 6 minutes per day. Since I changed it to this almost completely off level, I have had two small, very small, 'tics" - starting at the tip of my nostril then spreading quickly out - up towards my eye and down into my chin area. Could I really still be feeling something? It is still on so I guess the answer is "yes."

The upside is that having it almost off has proven it was helping. That is the good news/bad news.

Good because I know that it was, and is worth, keeping in and on.
Bad because to figure out what is wrong with it they have to turn it back up to a much higher level in order to have the computer 'read' it to find out what is wrong. That scares the heck out of me.

I am very afraid that the feeling that made me turn it down in the first place will come back with an even greater kick because it has been turned down so low for a relatively long period of time.

I have the other big worry. What the heck is wrong?

Is it merely the battery that was replaced a few months back? That would be good because fixing it is relatively easy. Is it the wires or the computer chips? My stomach clutches and my mouth goes dry thinking about that.

If it is the stimulator it would mean taking it out - pulling off the computer chip that is now encased in scar tissue and very intimate with the covering of my brain, pulling out the wires that have gotten very comfortably ensconced in their own scar tissue cocoon. (And, hopefully replacing it.) One doc has said he doubts the insurance would cover it if it needed to be replaced (since it is completely experimental).

My current neurosurgeon first said he would not be willing to fix it but then said, while he was replacing the battery, he would do it, if that was ever necessary.

I figure maybe you should trust a doctor at their first word.

The surgeon who put it in is in Colorado. I do not have the airfare nor a catsitter (if he would be willing to do it), And maybe he would not want to do it again anyway.

So, the appointment is tomorrow. I know something is not right. It is a long way from knowing that to seeing myself on a plane to Colorado; but it is very hard to keep my mind from taking the trip. I'll let you know what happens.

Defense to the offensive.

I thought it might be interesting to put together a list of chronic pain disorders or conditions that result in chronic intractable pain as one of the signs/symptoms.

I write this in response to a commenter (hard to tell if all the comments were from one person using aliases or more than one person.) It is the same old story of defending the reality of chronic pain. People believe when you have other invisible illnesses, like cancer or diabetes. This should be no different but for some it is and that is a shame, for them and for anyone in their lives who suffer with/from chronic pain disorder.

Please feel free to add others.

Lupus
Rheumatoid Arthritis
CRSP, complex regional pain syndrome
Fibromyalgia
Back problems and injuries that cannot be fixed
Arthritis (which can be very severe)
Multiple sclerosis
Anaesthesia dolorosa (phantom pain)
Trigeminal neuralgia and other neuralgias of the cranial nerves
Cancer
Post cancer pain.
Failed surgeries that result in neuropathies that cannot be cured.
Migraine
Osteoarthritis

It was true for a shot, it is true for the pain.

I used to be phobic about needles. Even the idea of getting one turned me into a coward.

Many, many years ago I worked in the emergency room at my local hospital. One day I mentioned to one of the nurses that I had stepped on a rusty nail the day before. "Carol, did you get a tetanus shot?" "No. No, I don't need one." Yes I did, she decided, and told me to wait in the exam room and she would be back with a shot.

I waited: thinking about the shot, imagining the shot, feeling the shot. My agitation increased. By the time she came back to the room the little injector she held looked to me to be about 9 feet long, with a needle as sharp as an eagle's beak and three times as long.

My quivering did not go unnoticed. "You don't have to be afraid. Look, it is just a short needle. It won't hurt that much." I scooched a little further back onto the guerney. "Oh yes it will. Oh. Yes. It will."

"I have a little trick so it won't hurt." Magic. I liked that. Maybe the shot would magically turn into a pill.

The trick required me to let her hurt me before she gave me the shot. Uh, really?

"Carol, I'm going to hit you in the arm right where the needle will go. I'll do it right before I give you the shot. I promise you won't the shot." Oh c'mon. Fear of the shot overcame fear of being hit. "You can close your eyes if that helps." I always want to see what is being done to me. Eyes open, I waited for her to move back, take a steady solid stance and swing out and into my arm.

My eyes followed her hand. Up it came. She turned it towards my arm. Uh oh. Tighten up. Here it comes. And I felt a tiny slap, a sting, a mosquito lighting on my arm and biting gently. And before I could pull away the needle hit my arm, entered my flesh, and was quickly removed. And it did not hurt, at all. Susan saw my slight smile. "It didn't hurt because you can't feel 2 sensations at once. You felt the sting, so you couldn't feel the shot." Wow. I gotta remember this.

I did the other day after I turned off the internet and my computer. I wanted to stay online: reading, answering emails, checking FB etc. but the pain had been growing as I fought to ignore it. I kept convincing myself, 'just a minute or two more. You can do it'. Finally I reached the point I usually do; when the eye, when the pain, becomes the dictator. "Get off the computer. Get off right this second."

The pain is bad but it is... okay. The kind of okay where you think if I just atop for a little bit, a few minutes or so, it will go away.

But it does not. As soon as I turn the computer off I feel pain in my eye and lids. It is at the slippery slope of nausea, any movement of my eyes making it worse. The few minutes I thought I would need becomes a half an hour, an hour. I sit trying my best not to move the eyes at all, the stillness of my body not stilling my sight. I move and my eyes move too.

Almost everything makes the pain worse. I lie on the bed. Eyes open I stare at a dot on the wall, or the ceiling, and force myself to not look even a tiny little millimeter to the left or the right. I stay this way as long as I can, hoping it will be enough to bring the pain back down to at least a manageable level.

Sooner or later, usually a lot later, I am back to my stable state, the pain minimal as long as I keep the eyes somewhat quiet. (The pain is the left eye but movinig the right one brings the left eye along with it, there is no way to use, and move, only the right eye. Would that there were, then I would be fine.)

I think about it. Why is it so much worse once I have stopped using the computer? It makes no sense. And then I recall Susan and the shot. The computer is the slap. As long as I am doing something to keep my mind occupied I do not feel the pain as much. My mind cannot feel the two things simultaneously. It cannot take in the thoughts and information I am processing and acknowledge the true level of the pain simultaneously.

It is one of those aha! moments.

Will I learn from it? Will I stop doing the ocmputer or something else I enjoy or need to do or get done before the pain gets to the level where I have to stop - a level I know is always less than the true level? I did not do it with this post, but that does not mean the answer is never.

It is a lesson for most of us with chronic pain. When our body first starts saying "stop" it needs to be heard. When we refuse to listen the cost is much much higher in the end.