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.

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.

What color pain?.

Today I read another post in a chronic pain support group about a family member not believing the person was in pain. It is too common a cry, "My (family, spouse, friends, colleagues) do not believe me. You don't look like you're in pain, they keep saying."

My father used to say to me "I don't know why you can't work. I have seen you read, so I know you can."

I repeatedly told him "I can read, it is not that I can't. It is that use of my eyes to read or for any other sustained use for more than 15 - 20 minutes causes severe pain so I have to stop. That is why I can't work."

How could I prove that I had the pain? How could I prove that the eye pain forced me to stop using my eyes?

I could not. Back pain, muscle pain, full body pain. How do you 'prove' that. Move a box one day and the next when you say "I can't." you are suspect. Hold down a job. Your pain cannot be so overwhelming then, can it?

For some reason I was reminded of when my father died. The Rabbi gave each of us a black armband to wear. We were to keep it on for a month. I was the only one to wear it the entire time.

I lived in NYC. When I walked through the jewelry district, home to many conservative and orthodox jews, I expected my mourning to be acknowledged, the armband the symbol that brought us together; for just a moment in time.

No one said a word, or lowered their head in acknowledgement. I wanted someone, anyone, to let me feel a part of something bigger, a community. It did not happen. On the 31st day I took it off and flung it into the trash.

We need to be a part of something bigger than ourselves. We need to have our pain acknowledged.

It is pink time again. People with cancer are embraced by the society, especially if it is breast cancer you have. It occurs to me that there is also a leftout if it is a cancer elsewhere in your body, or for that matter, if you are a man with breast cancer.

There is no color for pain. There are too many conditions that are the root cause of it. Fund research for say, lupus, and the pain of trigeminal neuralgia is left in the sand. Fund fibromyalgia studies and those with CRPS are out in the cold. Fund breast or lung cancer and there is a good chance the results can be used for those who have pancreatic or liver cancer.

Those of us in pain mourn the lives that pain has taken from us. The color black is already taken for all the other losses we have in life. Is there a color for us to appropriate? If we wore the ribbon on our collars would we stop hearing "I don't believe you are in pain."?

Ben's friends is no friend of mine - follow up. or How to evade responsibility.

I am so saddened that the owner of a support group behaves in a way no different than what many of us have experienced with friends, family, colleagues, etc.

I had written earlier about Ben' Friends group, living with atypical trigeminal neuralgia.

I received a note saying I had been suspended for spam they could not prove and harassment, for which they had no explanation other than to say if I replied to an email from one of the administrators it would be considered harassment.

I sent copies of the email and my replies to Ben so he would be aware of what was happening. He emailed me back asking that we speak by phone.

During the conversation I reiterated that I asked for proof of their allegations: they had none. I also told him I had owned a ning group such as his. When I suspended someone for spam I sent out a note to the group telling them someone had been removed for that reason. The same can be done if someone is removed erroneously.

Accusing someone of spamming and harassment is a major 'crime' on the internet. They needed to apologize, or correct their lie, by posting a note that they had wrongly suspended a member for those reasons. They did not even need to use my name.

This was the reply I received from Ben this morning.

It is a typical response to someone who truly does not 'get' it.

Instead of acknowledging they were wrong, instead of issuing an apology which he said they felt would be "inappropriate" with this "issue" he seemed to put the the blame for this fandango on me, writing "I know you have dealt with a lot in your life, medically," and wished me the best of luck.

My medical experiences had nothing to do with being wrongly accused.

It is sad when moderators, when shown to be wrong, when proven to put out bad information, are rewarded but the whistleblower is shown the door.

Support groups are good and necessary but no group is good, or safe, if the ones on whom members rely are so glued to their wrong positions that they refuse to acknowledge their errors.