How honest is too honest?

I was excited about doing the blog. On days like today though, I am unsure about it. How much do you disclose? I read some blogs where people go naked in their despair, happiness, dropping chocolate on the floor 20 minutes ago and eating it despite the 30 second rule.

The Pained Life, for me, is not just 30 years and counting. It is 50 plus years and counting.

Do I write about the pain caused by my family? Do I tell you folks whom I do not know but know are here the things that have been done to me? Do I feign optimism on days when truth and pessimism are the words of the day?

It is a beautiful day. I want to go out and do something with someone but there is no one to do it with, and really how much do I want to stress the eye anyway?

For me, as much as Spring is my favorite season; so beautiful, all the flowers, colors, sights - bunnies and folks coming out of hibernation, and smells, absent the allergies how can you not glory in it?, it and summer are the worst for me.

I cannot drive at night. It used to be because my left eye would erupt in pain the minute a headlight came towards me. The pain would cause me to close both eyes and involuntarily take my hands off the steering wheel. No one was safe. Now I have a tiny cataract in the right eye. Everything has a glare at night: headlights, street lights, bike shoes lights. No one is safe.

Fall and winter have shorter days. The shorter the day, the less sunlight; and the less sunlight the sooner the dusk and dark when I have no choice but to stay home.

The sun streams into my bedroom window. It wakes me early. It is beautiful. And frustrating. How many hours do I have to fill before it is too late for me to go out?

The frustration of the day leads me to thoughts, places, where I prefer not to go. Why did the people who are supposed to be my family desert me, so many, many years ago, at a time when my life looked it was going where I wanted it to go? Lies have been told to people who used to like me. Tales based on untruths passed down to the next generation.

A few of us from the church sang at a member's funeral yesterday. I listened as the woman's granddaughter talked about her wonderful memories of her Grandmom. I teared up as I heard the choking in her voice. I thought selfishly about my aloneness.

When I fell, there was only one person I could think to call and ask for a ride home, but I knew he would be at work. The cab company did not answer their phone. Biting back the embarrassment I felt at having no one I called the church. Immediately I heard a very warm and upset voice, "Absolutely we will get someone there for you." Within 10 minutes or so, Jean (pseudonym) was there. We barely knew each other but she was so sweet to me, and very happy she could help me. I was inordinately greatful; but once home there was no one to call me, no one to ask; is there anything I can do, anything you need? The ultimate thought while the granddaughter spoke at the funeral: When I die who, if anyone, would speak for me?

I look at my life. It ended the day the trigeminal neuralgia started. Is that an overdramatization? In one way no. In another yes.

It ended in that I could not have the experiences that would have helped correct the bad lessons I learned early on in life. It stopped my dreams of being on a stage, of singing professionally, of having a life like any other.

It did not end because I am so very lucky. I can walk, and talk, and think and feel. I have a roof over my head, money to pay my bills, people/friends I 'talk' to online, a nephew for my family, and though no one right here, in front of me, 'real life'friends (people I used to feel and touch and play with, go for a coffee, etc.) with whom I have a continuing online or phone relationship.

I always like to end things on an uplifting note. Forcing myself to do so with this post has also forced me to look at the up side.

So now that I have made the frown turn upside down, I think it is time to end the post.

And the thought occurs, have I shared too much, even while giving hints and teases but ultimately not being very forthright at all?

Do I say The heck with it and hit the publish button?

Greatful for the internet (Part 2)

Some of this I said in Part 1 but here is another reason to be happy there is an internet. To summarize: living alone and being alone is the pits.

When you live alone, if you have pets you talk to them. Yes, I do talk to my cats. Absent a tag wag, or a blink, they do not talk back. Sometimes you talk outloud to yourself. It helps to hear a voice, even if it is just your own, old, familiar one. Sometimes you find yourself talking to the air. I put out a question. Thankfully, the air does not answer, at least not yet.

You always have to be on your toes that the talking does not become too much of a habit.

If it becomes a habit, you wonder, or catch yourself, doing the things that make you look 'crazy' to others, or at least very alone. Do I talk outloud at the supermarket? Do my lips move when I am having an internal dialogue with myself?

One day I noticed a lady standing next to me in the line at the supermarket. She was talking outloud to herself. She caught my eye. "I live alone" she said and smiled. She needed no further explanation.

I "talk" here and that is okay. 'Crazy' gets assigned only to things you write with which others might disagree. I mentioned to an online friend, someone from high school who reconnected with me, (and with whom I 'talk" almost every day) that I joined a blog group and I was being inundated with emails. Because of the eye issues I end up deleting a lot of them. Reading them all would be impossible for me. Doing so I feel guilty, but there really is no other choice.

"I have been off the computer for maybe a day and have over a hundred of these mails." I kvetched. He wrote back, "Now you know you're not alone."

He is right.

I sign up at a site and people immediately respond. They have much to say and offer and I love to 'hear' it. I put out words and someone says, "Me too.", "Thank you for saying that." or even "You're completely wrong." A dialogue is started. It may end quickly, lots of political debates end that way, or go for a while as support starts, grows and envelopes both or even all of us.

I write here and someone reads what I have to say. I send it out to the air and this time the 'air' answers back.

What's in a name?

I have not had face pain from the trigeminal neuralgia for over 12 years. Because of that I do not like to say I have trigeminal neuralgia (tn) despite the eye pain that continues.

I am not sure if my fight is with myself or with the name. I do not want to think of myself as having trigeminal neuralgia because I do no longer have neuralgia in the area of the trigeminal nerve.

As soon as the first pain came so too came the eye movement and usage pain. That eye also became exquisitely sensitive to light.

After the first neurosurgery, all the pain was gone, including all eye problems. Then, 3 months later, the pain came back in my face. The eye pain came right along with it.

Ultimately I lost the face pain. I still have phantom pain and some 'tics' from that but nothing that I could or would call trigeminal neuralgia.

It is the eye pain that keeps me from working. When asked by surgeons "What do you want to get rid of; the eye pain or the face pain?" my answer was always the same. "It's the eye pain that keeps me from being in the world, from working. That is what I need to have fixed." I always felt the touch induced pain, the spontaneous pains and even the constant pain could be handled. The eye pain never seemed to be tamed, no matter what I did or tried. If you cannot read or ues your eyes for more than a few minutes, there is no way you can work.

Tonight I was thinking about it for the gazillioneth time. How can this eye pain be fixed? Every doctor I talked to, neuroophthalmologist, ophthalmologist, neurosurgeon, neurologist, all said the same thing. "I don't know why you have it, what caused it, or what we can do about it. I'm very sorry." That never made any sense to me. How can someone have something that cannot be fixed, not because they cannot fix it, or at least help it, but because to a one they would add, "I have never seen this before."

I have no idea if being able to categorize or name it makes a difference, but I realize my thinking about it has been wrong all this time. It came with the TN, it went with the TN, and it came back with the TN. So. Maybe it is TN. That has not made it respond to the things that have been done for my TN. Naming it does not seem to help. That started me thinking about some other pain disorders.

RSD, regional sympathetic disorder, now renamed Complex regional pain syndrome (CRPS). Has naming the specific signs and symptoms helped those who suffer from this strange malady? Fibromyalgia. Does that name make a difference for those with the cluster of symptoms that define fibro?

I think it has, not enough to get cures but to get more docs to look into them, more pharmaceutical companies to research and develop drugs more specific to the disorders. And more and more docs to stop naming patients malingerers, lazy people looking for an out or for drugs, or just plain crazy when they come into their offices with the same stories about their pain, where it is, what started it, how they feel.

What's in a name? A rose is a rose is a rose - is my eye pain merely trigeminal neuralgia - but it also may be a very unique rose requiring attention different from any other one.

So greatful for the internet.

I found a site today http://bookblogs.ning.com/ and it reminded me again why the internet is so important to me.

The pain started six months after I moved to NYC, too soon to have made any strong friendships, ones that could weather the storm that was my life with trigeminal neuralgia.

The first surgery I had worked for three months. Six weeks after the operation I was working at House Beautiful magazine. Almost immediately I made 2 good friends, Jan and Blanche. We spent many weekends together and often went as a trio to lunch or dinner.

Once the pain returned it was impossible to continue with the relationships. Everytime they invited me to go somewhere I had to say 'No." New friendships can only take so many rejections before they end. No one said anything. It just petered out. Did I not return their calls? Did they not return mine? I do not know. I just know they had lives to live. I had only pain.

My family was not there for me. My half siblings were there for none of the 12 surgeries I ultimately had, starting in 1977. My parents, one or both, came for the first 3 but then stopped. I was truly on my own.

Work and family are where you make friends. I had neither and was in no position to either make a family of my own or meet people to make new friendships.

I did have 2 friends in NYC, both from my apartment building. One I rarely saw and yet I think we both considered each other a 'best friend'. The other was a woman, also disabled, who was not able to get out and around. She told her father "The only reason we are friends is because of our disabilities. Otherwise there is no way we would be friends." She was telling the truth. Necessity makes strange bedfellows, or friendship in our case. Sadly both of them died. I was alone again.

A few years later I moved back to Pennsylvania, only a few minutes away from one sibling and 30 minutes from the other. My brother would leave Florida and move back a few years later.. He also now lived about 30 minutes away from me.

The 2 sisters were friendly at first. Then they decided they did not like me, no idea why and they never discussed any issues with me so we could work things out. Alone once more.

I did make a friend in my townhome community. It was again a friendship based on need rather than shared interests and like. Jane (pseudonym) was a lovely lady who took me everywhere with her. I was unable to drive; I was very dependent on her, but year by year our differences grew stronger and need became the only tether. Ultimately the friendship ended. A newer friendship, with someone I met at a yardsale, was more based on similarities and shared interests. Then she moved to New York.
We talk on the phone almost everyday; but it is not the same as someone there in front of you whom you can see and spend time with.

I sing in the church choir, and know people in the church, but there is no one I can truly call 'friend'. Some have been very kind and friendly, but they all have their own lives. Many work, they have children and grandchildren, their time is filled. There is not much room for someone new. I go to choir rehearsal and service, and fellowship afterward but, ultimately, I have to go home, and it is once again to home alone.

The computer is often a harbinger of pain for me, because of the intense amount of eye work, reading or writing, but I would be bereft without it.

It is here I "talk' to my nephew, the one person in the family brave enough to have sought me out years ago when no one else would. We write almost everyday. On facebook I "talk" to some people from high school, discuss politics or chronic pain or medical issues or even nothing at all, meet new people through websites and now blogs, have lovely, kind people at my website.

If it was not for the internet I would be even so much more alone. Yes, the people, for the most part, are only names (and maybe a picture) but it is people with whom I can feel a connection, sometimes even a kinship. For that I am almost unutterably greatful.

A bad weather day...a bad pain day?

A discussion was started at a support website (www.womeninpainawareness.ning.com) about the weather and the effect it has on those of us with chronic pain.

The joking stereotype tends to be true. The old lady sitting in the rocker "It's gonna rain. My rheumatis' is starting to hurt." is one of the best barometers there is for those with chronic pain.

I no longer have the face pain that is trigeminal neuralgia, only the eye usage and movement pain, but when I did I knew when the weather would get worse. The pain changed and became more insistent and pushing against my face.

I had a neurosurgeon hold his hand up towards the pained part of my face. He told me to close my eyes so I would not know when the touch was coming. Because one of the procedures made that area of my face numb as well (it is a strange amalgam, pain and numbness superimposed) I might not, in his mind, even know when I was being touched there.

Eyes closed I waited, afraid of when he would touch. I started to feel the pain intensify. "Your hand is making the pain worse. I don't know if you're touching me or not but I know you are very close."

"You just expected the pain. That's why you are feeling it." This doctor had another agenda. It was related to my lawsuit against the doctor who numbed my face and the one who had paralyzed it. The last thing he wanted was for me to really have the pain. He preferred if he could call me a liar or, at the least, an exaggerator.

"It has nothing to do with expectations." I tried to explain to him. "When you brought your hand up and it was close to the area the temperature and pressure changed. That caused the pain to get worse."

I told him to put his hand up to his own face. "Do you feel the difference?" He just walked out of the room. No answer from him. He did not want to see the truth of it but it was the perfect example of why we are so sensitive to the weather and so affected by it.

Pressure, changes in temperature, cold, all of these claim our pain.

Weatherman take heed, as someone I know said. We are better at predicting the coming rain than many a computer printout.

Where do you draw the line?

Thursday night was Maundy Thursday, commemorating the Last Supper of Jesus. There was a service at church and the choir would be singing one song.

I sing with the choir every Sunday. Rehearsals are hard for me, usually requiring at least one grain of codeine. It makes me feel logy, and my mouth dry. That makes it harder to sing.

There was only one song for the Thursday service but the choir director wanted us to come in early for a quick rehearsal (the same as on Sundays before service). After the service another rehearsal for the Easter Sunday service. In between, of course, was the ssrvice itself.

I worried all week. Can I do all this on Thursday? How much pain am I going to have? Am I going to be able to tolerate all of the eye work involved? Will I be able to smile and not let on how much pain I am having?

The last question was a gimme. Few people knew that I had pain. For those that did, they did not know that every choir time was a physical fight for me.

I wanted to sing at the service. I definitely wanted to sing for Sunday's Easter service. To do so I had to go to rehearsal. There was no choice.

So the line becomes what is worse, to do what you want and pay the high price or not do it and pay the cost of missing out on something so very important?

I heard this idea the other day. Things are not always black or white. Look hard enough and there may be a third alternative.

What is that alternative when you have pain and it is action specific?

How and when do you decide the pain outweighs the benefit (or enjoyment)?

I do not know. I pose the question. I was glad I went to the service. I could not have done so without staying for the rehearsal but I was also overwhelmed by the pain. The 2 did not cancel each other out.

But already I am anticipating, and fearing, next year.

It only takes a moment (part 2)

I keep promising myself I will get an egg timer. Not for eggs, but it would be nice to have it for that too. I need one to keep me from pretending I am not at the point where I cannot tolerate any more eye usage. To not continue to the point where the pain from the eye movement sickens me.

This invariably comes about because I am on the computer, my major source of reading and writing, too long.

I stopped reading books.

That is not quite true. I do read them but not the way I like to or want to. Before the pain I read a book in one or two sittings, no matter the length. Finishing a book in onoe or two sittings assured I never forgot who was whom, what they were doing, why they were in the place they were or who was the one who got shot and who did the shooting (I love mysteries).

Since the pain the book has to be one that will not interest me enough to make me want to continue reading on past my eye usage limit. If the chapters are short or the author uses chapter breaks, that is a book for me. Unwittingly the author has given me places where, unless I get too interested in the plot or points he's making, I can put it down.

Even now I fight myself.

I have been on the computer for a while. As long as I am not consistently writing or reading I can stay on for a long time. My eye usage, if added up does not come to a lot but more important, it is done in little chunks of time, a minute here, maybe 5 minutes there. Short enough spurts that it can replenish itself during the down time.

Writing this note requires me to not only write, but stop, check my typing, check the words. Is it legible? Does it make sense? How bad is my grammar? All of this is concentrated eye work. I think to myself, you can stop, save it as a draft and come back to it but no, I do not want to do that. My train of thought is on this now. Tomorrow I may not be thinking about what I want to say in the same way as I am now.

It will not take much longer to finish this post anyway. Now, where was I?
Oh yes, an egg timer.

I could find what my optimal eye usage time is before the pain starts to kick in. Then wind up the timer and let that decide for me when I have to stop.

If I do that though I have to admit I cannot work as long as I want to. It would mean my giving in to the pain, letting it make even more choices for me.

The irony is that it does make the choice whether I want it to or not.

The pain creeps in. I refuse to stop. The next thing I know I am forced to stop using my eyes, to do anything, even just walking to another room in the house is too much, my eyes moving as I rise from the chair, checking for any objects in my way, noticing the cat. Once I get to my room, I rush to the bed, the pain now bad enough that I am feeling sick to my stomach. I lie still, not moving my head at all, hoping and willing my eyes stay fixed in one position. The pain is so all consuming it refuses to leave. Instead of the half hour to an hour I have to wait when I use my intelligence and common sense and stop whatever reading or writing I was doing when the pain just starts I become unable to do anything, sometimes for up to 2 hours, the pain a chain from which I cannot unyoke.

It would not be enough to get a clock. That requires a lot of work to keep on setting it to ring in 20 minutes. I could get a large one and just keep an eye on the time but that means using my eye to see if I have any time left, circular silliness.

The timer dings, no way to ignore it or need to watch it.

It is such an easy answer. Doing it means saying I cannot do what I want when I want. It means, bottom line, admitting the pain controls my life.

Maybe writing it out will pound some sense into me. If pushed, I would have to admit that schedulinig the eye work would be a way of me taking control of the pain.

And wouldn't that be a needed change?