I wrote the other day about giving time.
I was waiting, pretty sure that all I needed was time; for the new changes in the implant to kick in.
I was getting frustrated, as always, thinking, in a tiny corner of my mind, Maybe I can turn it up just a little? What could that hurt? It is the up and down side of your doctor trusting you. I have access to the main computer to do these things, which is great. I do not have to trundle back and forth to the doc each time I think I need to have it changed/they want to make a change. The other side is it is all up to me.
2 days ago, it went haywire again.
I rarely feel the tingling, because the left side of my face is numb. Suddenly, again, the whole left side of my face was tingling, pretty strong - no, very strong. Not as strong as the few months ago back when I was in trouble but again in a way that frightened me.
When Dr. Barolat put it in he was concerned about the chances of seizures, since he had not done this before, and there was no literature or research. I have been on an anticonvulsant for years, for the 'tics' I get from my phantom pain. I never had a seizure. I figure the time is long past for one but who knows? The feeling was so strange, and it was giving me some weird, implant type tingling in the right side of my face too, where no tingling should be. Just plain scary.
I decided first to get the magnet so I could turn off the battery if I had to (hoping I would have the capacity to do something if something happened). Then I turned down the level of stimulation figuring softening it would fix it.
It did not. I had no choice. I was afraid. The tingling continued. The weird feelings continued.
I waited for it to stop. That was strange too. It stopped in stages, starting in my forehead then inching down to my chin until finally, after an hour and a half, by the clock, it all stopped, even the sensations on the right side.
I was back to where I was. Afraid to turn it back on and the dreaded "What do I do now!"
I talked to my company representative who added more bad information. Maybe, she is not sure, they could test the wire. This might tell us if the problem is in the main wire or an extension wire. The problem is, even if it is doable, they no longer make the extension wire. It would take a year, or more, she said, for them to be able to make one for me.
I am willing to wait a year but then another question occurred to me. Could these surges be from the sensory cortex itself? I am waiting to hear back from my neurosurg who will hopefully be able to answer that question. But, as my rep said, how would anyone really know since you're the only one (we know) with a sensory contex implant.
I wrote about clinical trials but never about agreeing to be a guinea pig.
I was happy to have this implant. There were no options left at that point. Dr. Barolat was an angel to think of something unusual, willing to go out on a limb, giving me another chance.
I have had it for 20 years. That is the longest the company believes anyone has had a working implant. (That could also be an issue but then how would they know?)
I know the first implant, in the dorsal spinal column, definitely worked. I vacillate about this one but it does seem as though my eye usage time is less, and the pain more, when it is off.
I hate that there is no way to know a lot of the answers because there are, or were, only 12 other people with this (and most of them had a different form of pain). That said, and not knowing what this outcome will be, I can say, without hesitation, I do not regret agreeing to be an experiment.
What will happen now?
Only time will tell.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Thursday, February 9, 2012
Sunday, February 5, 2012
ONE MORE 'GIVE'.
I wrote a while back about giving: giving in, giving up and giving yourself permission. While changing the parameters of my stimulation I realized I left one out: giving yourself time.
It is so easy when trying a new pill, new treatment, even new levels and kind of stimulation, to give up quickly.
"It isn't working." after a day or two, sometimes even a week or two.
"It didn't work." after surgery, procedure or treament even though it has only been a day, a few days, a week or only a month.
"It doesn't work." Period.
That was the mantra to my doc after my first implant in 1986. It was doing absolutely nothing. I had to keep a magnet with me at all times. Touching it against the battery would turn it off in case of trouble. I hated feeling the battery under my skin. I hated touching the cold hard metal by mistake. I hated becoming attached to any metal I passed, machines, cashier's tables, etc.
I just hated the whole thing. Anyway, it was not helping - so what was the point?
My neurosurgeon and I agreed it would be removed. I was waiting until I felt like having more surgery. It was just a matter of time.
Three months passed. Maybe it's time to call and schedule it. Just get rid of this thing.", I thought as I turned on the water and got into my morning shower. I moved into position, my left face away from the spray so the the water could not touch the pained area of either the face or scalp and trigger the pain.
Somehow a few droplets of water hit it anyway. It did not hurt! Wait a minute. Could this really be? Incredulous, I stood still, trying to figure it out. Okay. I can do this I thought as I slowly turned my face towards the water. I was petrified yet hope was pounding against my chest and ringing loud in my ears and mind. I was a phobic deciding to do the thing I feared the most in the world. The water hit. Oh my G-d! No pain! NO PAIN! Three months. No benefit. And out of the blue - there it was. It was working.
I could have given in sooner and had it taken out. I had given no thought to 'tincture of time'. It was happenstance that I had this chance to have it work.
The changes I have made with this implant have not really kicked in - yet. I think there may be some benefit but I cannot decide because one day of eye usage can not be directly compared to the next. But this time I know I have to give it time.
It is very frustrating, waiting, hanging on, hoping. Part of me says the heck with it, it is not going to work. The hope and yearning part says, no, it is too soon. You must wait it out.
Tincture of time. It is a hated prescriptiion but maybe, just maybe, one that many of us need, no matter how hard, to try.
It is so easy when trying a new pill, new treatment, even new levels and kind of stimulation, to give up quickly.
"It isn't working." after a day or two, sometimes even a week or two.
"It didn't work." after surgery, procedure or treament even though it has only been a day, a few days, a week or only a month.
"It doesn't work." Period.
That was the mantra to my doc after my first implant in 1986. It was doing absolutely nothing. I had to keep a magnet with me at all times. Touching it against the battery would turn it off in case of trouble. I hated feeling the battery under my skin. I hated touching the cold hard metal by mistake. I hated becoming attached to any metal I passed, machines, cashier's tables, etc.
I just hated the whole thing. Anyway, it was not helping - so what was the point?
My neurosurgeon and I agreed it would be removed. I was waiting until I felt like having more surgery. It was just a matter of time.
Three months passed. Maybe it's time to call and schedule it. Just get rid of this thing.", I thought as I turned on the water and got into my morning shower. I moved into position, my left face away from the spray so the the water could not touch the pained area of either the face or scalp and trigger the pain.
Somehow a few droplets of water hit it anyway. It did not hurt! Wait a minute. Could this really be? Incredulous, I stood still, trying to figure it out. Okay. I can do this I thought as I slowly turned my face towards the water. I was petrified yet hope was pounding against my chest and ringing loud in my ears and mind. I was a phobic deciding to do the thing I feared the most in the world. The water hit. Oh my G-d! No pain! NO PAIN! Three months. No benefit. And out of the blue - there it was. It was working.
I could have given in sooner and had it taken out. I had given no thought to 'tincture of time'. It was happenstance that I had this chance to have it work.
The changes I have made with this implant have not really kicked in - yet. I think there may be some benefit but I cannot decide because one day of eye usage can not be directly compared to the next. But this time I know I have to give it time.
It is very frustrating, waiting, hanging on, hoping. Part of me says the heck with it, it is not going to work. The hope and yearning part says, no, it is too soon. You must wait it out.
Tincture of time. It is a hated prescriptiion but maybe, just maybe, one that many of us need, no matter how hard, to try.
Wednesday, February 1, 2012
CLINICAL TRIALS, INFO AND WHAT DO YOU THINK?
I was surprised by some of what I learned yesterday about these trials.
For instance: when I think of a clinical trial I immediately think, oh no I might get a placebo. I don't want to be playing around. As a chronic pain patient I also find I think of those docs who have not been able to give us a diagnosis so just say "It's in your head." What if I am on the placebo but I feel there is a benefit? Then is it psychological? (even though the diagnosis has been verified and reverified by tests, definitive signs and symptoms, and for me, surgery. Too many docs have made me paranoid. (Even a family that thinks 5 neurosurgeons operated on my brain just for the heck of it.) And what if I am on a med that is helping? I surely will not stop taking that drug.
Joan assured me that many tests are what is called 'add-on". It is easier for me to use her example.
If you have asthma, you would stay on your drug and get an 'add-on' a drug that is being tested to see if it will assist the drug you are taking, for instance, using an inhaler every 3 days instead of everyday when you are on the 'add-on' test medication. The other person gets the placebo so, regardless, is still benefitting from their normal regimen.
Other studies may have one group on a standard regimen while the study group takes the experimental drug.
This is a click for a full explanation of each phase of testing: http://www.centerwatch.com/clinical-trials/overview.aspx
And a click for Volunteering for clinical trial, what to expect, what to ask, how to get into one, etc.: http://www.centerwatch.com/clinical-trials/volunteering.aspx
For us for instance Astrazenica is currently testing a drug to see if it helps with the side effect of constipation from taking narcotics.
http://www.astrazenecaclinicaltrials.com/diseases-and-conditions/diseaseandconditions/?fieldValues%5Ball%5D=&fieldValues%5Breportavailable%5D=&fieldValues%5Brecruitingstatus%5D=&fieldValues%5Bdiseases%5D=AZN104170&fieldValues%5Bproducts%5D=&fieldValues%5Bphase%5D=
And here is click for list of clinical trials: http://www.centerwatch.com/clinical-trials/listings/
What do you think? Would you do a clinical trial? Why, why not? Would you want to be paid? What other information would be important to you?
I truly hope you will be open to answering these questions. It gives the testers more information on how they can help us and we them.
For instance: when I think of a clinical trial I immediately think, oh no I might get a placebo. I don't want to be playing around. As a chronic pain patient I also find I think of those docs who have not been able to give us a diagnosis so just say "It's in your head." What if I am on the placebo but I feel there is a benefit? Then is it psychological? (even though the diagnosis has been verified and reverified by tests, definitive signs and symptoms, and for me, surgery. Too many docs have made me paranoid. (Even a family that thinks 5 neurosurgeons operated on my brain just for the heck of it.) And what if I am on a med that is helping? I surely will not stop taking that drug.
Joan assured me that many tests are what is called 'add-on". It is easier for me to use her example.
If you have asthma, you would stay on your drug and get an 'add-on' a drug that is being tested to see if it will assist the drug you are taking, for instance, using an inhaler every 3 days instead of everyday when you are on the 'add-on' test medication. The other person gets the placebo so, regardless, is still benefitting from their normal regimen.
Other studies may have one group on a standard regimen while the study group takes the experimental drug.
This is a click for a full explanation of each phase of testing: http://www.centerwatch.com/clinical-trials/overview.aspx
And a click for Volunteering for clinical trial, what to expect, what to ask, how to get into one, etc.: http://www.centerwatch.com/clinical-trials/volunteering.aspx
For us for instance Astrazenica is currently testing a drug to see if it helps with the side effect of constipation from taking narcotics.
http://www.astrazenecaclinicaltrials.com/diseases-and-conditions/diseaseandconditions/?fieldValues%5Ball%5D=&fieldValues%5Breportavailable%5D=&fieldValues%5Brecruitingstatus%5D=&fieldValues%5Bdiseases%5D=AZN104170&fieldValues%5Bproducts%5D=&fieldValues%5Bphase%5D=
And here is click for list of clinical trials: http://www.centerwatch.com/clinical-trials/listings/
What do you think? Would you do a clinical trial? Why, why not? Would you want to be paid? What other information would be important to you?
I truly hope you will be open to answering these questions. It gives the testers more information on how they can help us and we them.
YESTERDAY WAS THE BEST DAY IN A LONG TIME.
I was asked to be on a panel at a conference about drug clinical trials. The focus was on ways to get more folks enrolled in, offering to, and doing them in a way that is more patient friendly.
I listened to one or two presentations.
The first was scary. The presenter was talking about a trial for those with bladder cancer, a very difficult cancer, in terms of what it is and how it easily reappears. Over the period of a year they would have 9 blood tests, 8 telephone calls from the tester, and 16 catheterizations. Not a trial in which many would want to subscribe.
The discussion was about how to turn that around and present it in a positive manner. The second presentation was more about how trials are done including the phases. That was interesting. It gave me a better understandiing of the recruitment process.
Then we had our panel. I was there with 2 other women. June had Parkinson's and, like Susan (both pseudonyms), who had diabetes, had participated in clinical trials. I have not.
We talked about joining a trial: why, or why not, did we expect to be paid or be given some form of reimbursement, how did we want privacy and data handled, and more. It was fun.
Then it ended.
I was walking away when Joan (pseudonym) asked me a question. She and I stood and talked for about an hour. About the conference and issues I, and the panel members spoke about, then about patient trials, and then about our experiences with some blogs and online things. Just plain old me and someone else, acting like regular people.
The discussion was not about things that were out of my life sphere or sphere of reference.
The other day at church a couple of people were talking about an ill spouse. The talk changed to another disorder. Both were problems everyone in the group could relate to, but me. Trying to throw my hat in the ring was possible only if I said something about "Well, when you have chronic pain..." Nope, no ability for them to relate to that. I watched for a minute or two, a puppy with her face pressed against the window, then left. I had nothing more global I could add.
With Joan, our talking was about many things we both had experience with and knew about. It has been a very long time since that has happened.
(I talk on the phone with my friend Dottie, almost daily, which is great and our conversations are long and varied. But it is different when you are face to face with someone, especially a new person.)
I did not have to read, and I talked to one person at a time. It made it a somewhat painfree day.
Could I do it again? Definitely. Not immediately because, well, there was the pain.
But it was the best day, partly because it was a day, a full day, not ever for sure. But in a very long time.
As I write about it now I am still smiling.
I listened to one or two presentations.
The first was scary. The presenter was talking about a trial for those with bladder cancer, a very difficult cancer, in terms of what it is and how it easily reappears. Over the period of a year they would have 9 blood tests, 8 telephone calls from the tester, and 16 catheterizations. Not a trial in which many would want to subscribe.
The discussion was about how to turn that around and present it in a positive manner. The second presentation was more about how trials are done including the phases. That was interesting. It gave me a better understandiing of the recruitment process.
Then we had our panel. I was there with 2 other women. June had Parkinson's and, like Susan (both pseudonyms), who had diabetes, had participated in clinical trials. I have not.
We talked about joining a trial: why, or why not, did we expect to be paid or be given some form of reimbursement, how did we want privacy and data handled, and more. It was fun.
Then it ended.
I was walking away when Joan (pseudonym) asked me a question. She and I stood and talked for about an hour. About the conference and issues I, and the panel members spoke about, then about patient trials, and then about our experiences with some blogs and online things. Just plain old me and someone else, acting like regular people.
The discussion was not about things that were out of my life sphere or sphere of reference.
The other day at church a couple of people were talking about an ill spouse. The talk changed to another disorder. Both were problems everyone in the group could relate to, but me. Trying to throw my hat in the ring was possible only if I said something about "Well, when you have chronic pain..." Nope, no ability for them to relate to that. I watched for a minute or two, a puppy with her face pressed against the window, then left. I had nothing more global I could add.
With Joan, our talking was about many things we both had experience with and knew about. It has been a very long time since that has happened.
(I talk on the phone with my friend Dottie, almost daily, which is great and our conversations are long and varied. But it is different when you are face to face with someone, especially a new person.)
I did not have to read, and I talked to one person at a time. It made it a somewhat painfree day.
Could I do it again? Definitely. Not immediately because, well, there was the pain.
But it was the best day, partly because it was a day, a full day, not ever for sure. But in a very long time.
As I write about it now I am still smiling.
Saturday, January 28, 2012
YOUR DOC. WHAT, AND WHO, SHOULD DETERMINE HIS PAY?
"The federal government's Centers for Medicare and Medicaid Services is finalizing a new reimbursement plan ...Under the proposed rule, adherence to quality care measures will be weighted at 70 percent of the payment formula. Patient satisfaction surveys will account for the remaining 30 percent. "
Is this fair?
If the ratings are based on willingness to communicate rather then just walk in, essentially ignoring you as she does 2, 3 other things (I had a doc who was on the phone the whole time he was supposedly listening to me and why I was there.) that is a good idea.
If it is based on knowing you and your history (if a first time visit, actually examining you, not just a cursory listen to your lungs and heart.) that is a good variable.
Does the doc have the ability to empathize? Does she actually "get" what you tell her, does she understand the level of pain you are in? Does she believe you? If she doesn't is she honest enough to say "I cannot help you." and offer to find a doctor who might?
Does she see you not as a patient but as potential criminal, malingerer, drug abuser? Is her attitude one of working with you or against you (your pain isn't real, it is not as bad as you say, etc.)?
Does she see you as money in her account? She has not been able to help you but continues to insist you come back, again and again, holding out the hope of 'the next visit' will be the one where she has the idea that will help you?
When I googled 'medicare payment tied to patient satisfaction' I came across an article written by a doctor. He wrote that he did not think it was a good idea because it will result in giving patients whast they want rather then what they need.
A site for student doctors agreed with that. Most cast patients as stupid, people who would give them a good rating only if they started "recommending Big Macs and Hot fudge Sundaes to everyone." ("http://forums.studentdoctor.net/showthread.php?t=819156)
One other big complaint: patients would want opiods and rate the doc bad if they did not get them. Chronic pain and chronic pain patients seemed to get the most ire from these docs and students.
I have stayed with docs who were awful and I have had docs that I wish had not retired or moved, docs I would literally lay down in the street for and say "Go ahead." to whatever they suggest.
Should those good docs get paid more? They had good communication skills, empathy, decency. I have also had awful docs who had these skills. And a few, very few, docs who would score very low on these qualities but high on the 'helped me' scale.
What are the qualities that make a doc good, that cause his patients to give him a good rating?
If he has these qualities and if I paid him out of my own pocket would I be willing to pay him more?
It is definitely a question worthy of discussion.
Is this fair?
If the ratings are based on willingness to communicate rather then just walk in, essentially ignoring you as she does 2, 3 other things (I had a doc who was on the phone the whole time he was supposedly listening to me and why I was there.) that is a good idea.
If it is based on knowing you and your history (if a first time visit, actually examining you, not just a cursory listen to your lungs and heart.) that is a good variable.
Does the doc have the ability to empathize? Does she actually "get" what you tell her, does she understand the level of pain you are in? Does she believe you? If she doesn't is she honest enough to say "I cannot help you." and offer to find a doctor who might?
Does she see you not as a patient but as potential criminal, malingerer, drug abuser? Is her attitude one of working with you or against you (your pain isn't real, it is not as bad as you say, etc.)?
Does she see you as money in her account? She has not been able to help you but continues to insist you come back, again and again, holding out the hope of 'the next visit' will be the one where she has the idea that will help you?
When I googled 'medicare payment tied to patient satisfaction' I came across an article written by a doctor. He wrote that he did not think it was a good idea because it will result in giving patients whast they want rather then what they need.
A site for student doctors agreed with that. Most cast patients as stupid, people who would give them a good rating only if they started "recommending Big Macs and Hot fudge Sundaes to everyone." ("http://forums.studentdoctor.net/showthread.php?t=819156)
One other big complaint: patients would want opiods and rate the doc bad if they did not get them. Chronic pain and chronic pain patients seemed to get the most ire from these docs and students.
I have stayed with docs who were awful and I have had docs that I wish had not retired or moved, docs I would literally lay down in the street for and say "Go ahead." to whatever they suggest.
Should those good docs get paid more? They had good communication skills, empathy, decency. I have also had awful docs who had these skills. And a few, very few, docs who would score very low on these qualities but high on the 'helped me' scale.
What are the qualities that make a doc good, that cause his patients to give him a good rating?
If he has these qualities and if I paid him out of my own pocket would I be willing to pay him more?
It is definitely a question worthy of discussion.
Thursday, January 26, 2012
REPRESENTATIVE GIFFORDS: I'M JEALOUS.
I was watching the coverage yesterday of Rep. Gifford's resignation from the House. People were standing, members from both sides of the aisle were teary eyed, hugs abounded.
What happened to her was horrendous, (as what happened to the other 13 people injured who have not been named and in the news (much less the people who were killed). It has been obvious that she is a very well loved person, within her immediate life as well as professional.
I felt guilty as I watched. Guilty because a part of me was angry and jealous at the love being sent her way. At the amount of help and support she had, and has, to help her in her recovery.
When I was at the neurosurgeon's, to talk about the problem with my implant, the possibility of another surgery was broached: have it removed or have it replaced.
The surgery for putting in the current implant torture. I was given a general anaesthesia and then awakened, repeatedly, as Dr. Barolat triggered the horrendous, excruciating trigeminal neuralgia pain. When the pain was the worst it meant he was in the right place. Could I even agree to such a thing again? I did not know - but surprisingly, even to me, that was not my first thought.
My first thought was - Could I go through this again, completely by myself? Watching the Giffords piece my thoughts went to the same place.
How is it some people have so much support, so many people pulling for them? I had to relearn to walk by myself, no one to cheer me on. I went down to the OR 9 times without anyone to see me off, or even for me to talk to, other then non-involved professionals. (I asked a nurse before one surgery "I know you won't mean it but could you just say the words, "I am sure you will be okay." I repeated my promise, "It's just words, it doesn't mean anything. I know you won't mean them. I just need to hear it." She refused.)
The implant is not working. Each time I change the parameters (of how it works) I feel the tingling of stimulation but then it quickly stops. One time it seemed to help but that lasted only a few hours. It has not happened since.
Yesterday morning, frustrated by the lack of progress, fearful of my options, I turned up the amount of stimulation. And then turned to the TV. The picture of Rep. Giffords and a whole congress, even those against her before the shooting, applauding, crying, and encouraging her filled the screen. How wonderful for her, said my head. How come it is there for her and so many others. but never for me, asked my heart.
To all who are alone with their pain, this blog allows me to tell you you are not alone, even if we do not know each other in person.
To all of you who have family, friends, colleagues who support and help you, be grateful and embrace those who 'get it'. You are very, very blessed.
What happened to her was horrendous, (as what happened to the other 13 people injured who have not been named and in the news (much less the people who were killed). It has been obvious that she is a very well loved person, within her immediate life as well as professional.
I felt guilty as I watched. Guilty because a part of me was angry and jealous at the love being sent her way. At the amount of help and support she had, and has, to help her in her recovery.
When I was at the neurosurgeon's, to talk about the problem with my implant, the possibility of another surgery was broached: have it removed or have it replaced.
The surgery for putting in the current implant torture. I was given a general anaesthesia and then awakened, repeatedly, as Dr. Barolat triggered the horrendous, excruciating trigeminal neuralgia pain. When the pain was the worst it meant he was in the right place. Could I even agree to such a thing again? I did not know - but surprisingly, even to me, that was not my first thought.
My first thought was - Could I go through this again, completely by myself? Watching the Giffords piece my thoughts went to the same place.
How is it some people have so much support, so many people pulling for them? I had to relearn to walk by myself, no one to cheer me on. I went down to the OR 9 times without anyone to see me off, or even for me to talk to, other then non-involved professionals. (I asked a nurse before one surgery "I know you won't mean it but could you just say the words, "I am sure you will be okay." I repeated my promise, "It's just words, it doesn't mean anything. I know you won't mean them. I just need to hear it." She refused.)
The implant is not working. Each time I change the parameters (of how it works) I feel the tingling of stimulation but then it quickly stops. One time it seemed to help but that lasted only a few hours. It has not happened since.
Yesterday morning, frustrated by the lack of progress, fearful of my options, I turned up the amount of stimulation. And then turned to the TV. The picture of Rep. Giffords and a whole congress, even those against her before the shooting, applauding, crying, and encouraging her filled the screen. How wonderful for her, said my head. How come it is there for her and so many others. but never for me, asked my heart.
To all who are alone with their pain, this blog allows me to tell you you are not alone, even if we do not know each other in person.
To all of you who have family, friends, colleagues who support and help you, be grateful and embrace those who 'get it'. You are very, very blessed.
Monday, January 23, 2012
WHY CAN'T IT JUST BE THE FLU?
Yesterday I went to church. Because the stimulator is still not helping (or working, not sure which) I knew that would be at least a one codeine hour. The pain got bad enough to need another half a tablet, but I refused to take it because the congregational dinner would start in another hour. That would definitely be codeine time.
I did good during the dinner. I guess it is habit now talking with one, two tops, people at a time, concentrating on looking directly at only one. I got away with not taking any pills.
Then there was a concert a friend was giving. Every time she invited me it was always at night and I could not go. Once it is dusk I am unable to safely drive (well I could if everyone else got off the road but the chances if that are pretty small.) This time the performance was at 3:00 in the afternoon. I could get there, even if I would only be able to stay for an hour. I was very excited, and very nervous. Would it be pain time? Probably.
I got away without taking anything. I had to fight the pain but it was not horrendous. I knew an hour would be about the most I could tolerate.
Luckily the group took their break at the one hour point.
We had not seen each other for some time. We were able to talk for a few minutes before the other concertgoers came out and wanted time with her.
Sadly, I was kind of happy to be leaving because the pain was breaking through. I did not want to take a pill or leave thinking about the pain and feeling the pain and the ick of the narcotic.
It was one of those good news, bad news times. I was glad to be leaving and not doing anything to make the pain worse. I was terribly sad that I was losing a chance to talk with and hang out with people who looked to be interesting and fun.
I was kicking myself emotionally as I walked to my car. Look, if you stayed the pain would have been terrible. You would have lost a lot of what people were saying because of the way the codeine makes you feel. You would have enjoyed and been miserable at the same time. What fun is that?
The damn pain!. That was my mantra. I kept repeating it. If it wasn't for the pain I would not have to be leaving already. If the eye just stopped being so annoying and unable to tolerate the headlights...well.. I heaved out a gigantic sign of resignation and anger - at myself and my situation. The damn pain. THE DAMN PAIN!
Oh, wait a minute It's not the pain. I forgot. I have a baby cataract in the right eye. That's what makes the glare so bad I can't tell one car from another once it's dark and their headlights are on. Oh. Right. It's not the pain. Well *^$%^*).
I have often said to doctors "Boy, it would be nice for you to just say, I know what you have. You have the flu. It is so frustrating that I don't just have something that everyone gets."
But I do. It is that 'what everyone gets' that makes it impossible for me to drive at night, to go to school or seminars or groups that meet at night. It has always frustrated me terribly. Going out at night is one way to meet people. I would take extra codeine for that.
It used to be the pain. My left eye was always blinded momentarily when a headlight came at me. The pain was the reason for everything wrong, for all the things I could not do.
And now it is not.
I sure am glad it is not the flu and I wish I did not have the cataract (It is in the good eye and small, no reason and possibly dangerous to remove it) but it feels good, as strange as that may sound, because now I am one of the many.
I did good during the dinner. I guess it is habit now talking with one, two tops, people at a time, concentrating on looking directly at only one. I got away with not taking any pills.
Then there was a concert a friend was giving. Every time she invited me it was always at night and I could not go. Once it is dusk I am unable to safely drive (well I could if everyone else got off the road but the chances if that are pretty small.) This time the performance was at 3:00 in the afternoon. I could get there, even if I would only be able to stay for an hour. I was very excited, and very nervous. Would it be pain time? Probably.
I got away without taking anything. I had to fight the pain but it was not horrendous. I knew an hour would be about the most I could tolerate.
Luckily the group took their break at the one hour point.
We had not seen each other for some time. We were able to talk for a few minutes before the other concertgoers came out and wanted time with her.
Sadly, I was kind of happy to be leaving because the pain was breaking through. I did not want to take a pill or leave thinking about the pain and feeling the pain and the ick of the narcotic.
It was one of those good news, bad news times. I was glad to be leaving and not doing anything to make the pain worse. I was terribly sad that I was losing a chance to talk with and hang out with people who looked to be interesting and fun.
I was kicking myself emotionally as I walked to my car. Look, if you stayed the pain would have been terrible. You would have lost a lot of what people were saying because of the way the codeine makes you feel. You would have enjoyed and been miserable at the same time. What fun is that?
The damn pain!. That was my mantra. I kept repeating it. If it wasn't for the pain I would not have to be leaving already. If the eye just stopped being so annoying and unable to tolerate the headlights...well.. I heaved out a gigantic sign of resignation and anger - at myself and my situation. The damn pain. THE DAMN PAIN!
Oh, wait a minute It's not the pain. I forgot. I have a baby cataract in the right eye. That's what makes the glare so bad I can't tell one car from another once it's dark and their headlights are on. Oh. Right. It's not the pain. Well *^$%^*).
I have often said to doctors "Boy, it would be nice for you to just say, I know what you have. You have the flu. It is so frustrating that I don't just have something that everyone gets."
But I do. It is that 'what everyone gets' that makes it impossible for me to drive at night, to go to school or seminars or groups that meet at night. It has always frustrated me terribly. Going out at night is one way to meet people. I would take extra codeine for that.
It used to be the pain. My left eye was always blinded momentarily when a headlight came at me. The pain was the reason for everything wrong, for all the things I could not do.
And now it is not.
I sure am glad it is not the flu and I wish I did not have the cataract (It is in the good eye and small, no reason and possibly dangerous to remove it) but it feels good, as strange as that may sound, because now I am one of the many.
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