MEDICAL MARIJUANA. IS IT TIME?

A Pained Life: Changing Attitudes about Medical Marijuana

July 17th, 2013 by Carol Levy, Columnist


When I was in my early 20’s, years before the onset of my pain, I was offered a marijuana cigarette. I didn’t want it, but the pressure from my friend was so great I finally took it. I puffed on it once. I did not inhale.

I was not sure what effect it might have on me or how it might make me feel. I was afraid of it.

bigstock-The-words-medical-marijuana-su-17121803A few years ago, feeling desperate for anything that might help with the pain, I googled “medical marijuana.”

I found a site in Canada. The only requirement was that you send them a note with the name of your medical disorder. The seeds arrived in the mail and I planted them in the laundry room sink.

They were fast growers; within a week or so I had some beautiful plants.

I wasn’t sure how to use them. I also wasn’t sure I had the nerve. It turned out my worry was for naught.

On my way to check on the plants I walked into my living room. My cat Rooty was running around the room, really, really enjoying herself. That was out of character. As soon as I walked into the laundry room I saw why. All of the plants had been eaten down to the root.

It let me off the hook. I no longer needed to make an active decision about trying “pot” for my pain.

I have been sitting on the sidelines on this issue. Although it has disturbed me that, despite proof of the benefits for those with cancer pain, loss of appetite, HIV and other disorders, medical marijuana has remained illegal in most states. Even when I am asked to sign petitions about making it legal I have not done so, not being sure exactly where I stand on the issue.

But then my self-interest came into play.

I have “phantom pain” of my face (anaesthesia dolorosa). This is a neuropathic disorder. It often defies treatment.

A recent study published in The Journal of Pain about vaporized cannabis significant improving neuropathic pain changed my mind. Although I have not become an active advocate, at least not yet, I follow the debate over medical marijuana much more closely. I am more willing to add my name to the petitions for making it legal.

As chronic pain patients, we are under fire from the DEA. Their rules have made it more and more difficult to get the narcotic medications many of us, including me, need. It has also made it harder for some patients to find doctors willing to prescribe them. That makes it even more important that alternative therapies be found.

Marijuana is one of those therapies.

The study is a small one, only 39 subjects, but the researchers found a significant benefit for those patients who have treatment resistant neuropathy. That would be me.

I know there are many reasons and many people who do not want to see medical marijuana legalized.

However, for me and many others, it could mean the difference between staying disabled and being more able. Dare I hope, maybe even becoming “able.”

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Reposted from my column: http://americannewsreport.com/nationalpainreport/a-pained-life-changing-attitudes-about-medical-marijuana-8820892.html

TIMING MY PAIN.

I was sitting at a table with some people I knew, slightly.

I did not know how much of my situation they knew, but the issue came up about my not being able to work. I told them about the pain that comes from any consistent use of my eyes for more than 10 to 20 minutes before the pain becomes too severe for me to continue.

They immediately came up with suggestions, most of them centered on using a timer.

“Set it for 15 minutes so you will have to stop,” they suggested.

That’s a good idea. In fact, I came up it with a long time ago. The only problem is, it’s a lot easier in concept then reality.

I am reading a mystery, my favorite kind of story. The book is getting exciting, the clues mounting, the name of the person “who dunnit” to be disclosed in… wait, bringgg!

Off goes the timer. I can’t stop now. I have to find out who did it.

I know better, but I think, as I often do, five more minutes won’t make a difference.

But of course, it does.

Sometimes it is more important eye work, writing this column for instance. I cannot break off in the middle. I lose my train of thought and have to start over, which means going past the time limit the next time I work on it.

Sometimes I get to the point where I need to stop, but in order to not lose my concept, I continue making notes; which takes me past my time limit. The pain is then at the point of no return, at least for the next hour or more.

If I go to a store, I need more than 15 minutes to find what I need. I use my eyes the entire time. I cannot just stop.

The same is probably true for most of us. The time allotted before the pain becomes unmanageable is usually taken up with getting ready to do whatever task is at hand. By the time we are in the midst of doing what we set out to do, the time is up.

From the outside looking in, the answer to keeping the pain at an “acceptable” level is simple. Just stop. I daresay it would be easy if this was not our lives.

If it was just a a short term problem, a sprained ankle or a scratched cornea for instance, it is no big thing to keep our usage of the pained area to a minimum. When it’s a constant pain, the timed approach is not workable.

When I try to explain that to people, I see the eye rolling, the turning away: she doesn’t want our help. She doesn’t want to change her situation.

They have no idea how dearly I want that.

I wish we (I) could use the same tricks and ideas that work when pain is temporary.

But I don’t think we can.

The timer rang about 10 minutes ago. I added another 10 minutes so I could finish this column. And now I am paying the piper.

Do I regret forcing myself to continue past the time limit? Yes and no.

Yes, because now the pain is very bad.

And no, because I was able to finish what I started.

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Reprinted from my column at National Pain Report http://americannewsreport.com/nationalpainreport/a-pained-life-timing-my-pain-8820790.html

PAINAHOLISM.

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

I think most of us are familiar with those words.  It is the serenity prayer used by Alcoholics Anonymous.

As someone who has had chronic pain for over 30 years and only recently stopped writing “disabled – at present” when I had to fill in my occupation on forms, I have tremendous difficulty in accepting what I cannot change, at least when it comes to my pain.

I have fought for most of these 30+ years to change the pain.  Sometimes I have been successful, other times not, sometimes overwhelmingly not.

I am not sure when courage becomes desperation.  Just as an alcoholic hits bottom and says “no more” — we have to learn to say “I accept that pain is a part of my life and it is time to live with that knowledge, to make the changes I need to in order to accommodate the pain.”

Unlike alcoholics who cannot drink again, we cannot swear off trying to stop the pain.  It is a bargain, accepting the reality, but also knowing and hoping that medicine makes strides every day. What is not fixable now may at least be helped or stopped sometime down the road. Relying on hope makes the present that much harder to live with, makes the acceptance that much more challenging.

Support groups help.  Whether online, in person, or both it is good to be where we know we are not alone, that others know and intimately understand our struggle.  A place where we are free to share our fears and struggles, to vent and to know someone will hear us.  To know they are the same as us.  It is a validation that too many of us do not get elsewhere.

There is actually a group called Chronic Pain Anonymous. Should we be embarrassed or shamed because we have chronic pain?  The idea of a support group that invites the comparison of chronic pain to alcoholism takes the analogy way over the line.

At some point, we do need to look at how we live. Alcoholics talk about the alcohol taking over their lives, how they are powerless against it.  Taking back their lives means taking back the power.

When the issue is pain and the power it has over us, we need to make a choice, one that may be just as wrenching and as difficult as the decision to stop drinking is for an alcoholic.

We have to say, to feel it deep within ourselves, for me to feel it deep within myself, that I have given the pain authority over me.  We need to affirm it is time to take back that power, to let the pain be a part of us but not the overriding part.

Let us announce, as of this moment. Pain, you are not in control of me.  I am in control of you.


http://americannewsreport.com/nationalpainreport/a-pained-life-painaholism-8820349.html

TO BANQUET OR NOT TO BANQUET.

The choir banquet is coming up.  I have gone to the last 3.  They are nice.  The restaurant is nice, the food okay, the company good.

But.  The lights are bright.  No matter where I sit I have to look to the left and to the right to talk to people.  It is a codeine laden night.

Since my implant has died the pain from eye usage and movement has gotten worse, and worse.  I find myself doing less and less because of the increase of pain and the decrease of eye usage time.

Choir rehearsal, and the church service is very hard for me.  Rehearsal requires a lot of singing and a lot of looking at the sheet music.  In addition, the room is very bright.  Since it has gotten hotter there is also the movement of the fan.  The eye responds in pain not only to my moving it but when something moves in front of it so the fan is an additional problem.  The service is hard even though we only sing one song and 2 hymns (and an introit).

I do better after church when we go downstairs to 'fellowship'.  The light is bright but I am not as close to them as I am in choir where the ceiling seems to be lower, in addition to sitting on a higher level so we are closer to the lights.  There is no choir director to have to try and watch for movements to indicate when and how to sing.  Nevertheless, if I talk to too many people I can be in trouble with the eye.  The benefit is I can leave whenever I want.

The banquet requires too much of me.  I am not sure why but I have never felt I am a fully accepted member of the choir.  I try to talk to people or be involved in conversations but often am ignored.  I am not sure if that is me or them.  (Another topic for another post, do I give off the scent, "don't ask".)  Going is an inclusion.  The pain is an exclusion.  In addition I cannot drive at night so I have to stay no matter how much trouble I am in with the pain.

This year I have made the decision.  I am not going.  I am giving in to the pain and the fear of the pain.

It is a decision I hate to make, it is a capitulation I abhor.  And sometimes it is the hateful that is the right thing to do.

NOT ALL CLICHES ARE OLDIES BUT GOODIES.

 

 

 

 

 

When someone hears my story about the medical malpractice that paralyzed my face, invariably they say, “What goes around comes around” or “He’ll get his.”  Some talk about “payback” or say “Karma will get him in the end.”  I get it. It’s a way to make me feel better. But it doesn’t.

It doesn’t because if he’ll “pay someday” or if life “takes care of it” then I have to ask the other side of the equation:  Is my pain the result of my bad Karma?  Is the malpractice, and the stopping of my life and dreams, my payback?  After all, if he’s getting his, am I getting mine?

I think about the clichés people use when confronted with a situation they do not understand or know how to deal with.

“God never gives you more than you can handle.”

He doesn’t? Then why is my pain overwhelming? Why am I struggling so hard to live with it? Am I a failure because I can’t handle it?

“It could be worse.”
Worse then what? Cancer? Losing a loved one? Of course not. But you know what? Pain consumes our lives and it consumes my life. When it doesn’t, it stops me from being involved with life. It keeps me isolated and drugged.

No. I am sorry. I already know I have it better than many people.

I think of my eye, my face, as separate from my body. Many of my doctors also see it that way, saying “I can’t help you because your pain is above the neck.”

My body works. I can get out of bed in the morning, dress myself, walk, bend, do everything a body needs to do. That puts me ahead of many, including many who live with chronic pain.

I have a roof over my head and enough money to get by, at least in the short run. That puts me in a better position than many others who are not as fortunate. I try to remember that, but when you say to me “It could be worse,” I feel worse. I feel chastised.

I have had 12 brain surgeries to try and help the pain. My head is a mass of indentations, soft spots, scars, and additional problems because of the operations.  A few years ago a friend told me, “You’re brain damaged.”

I was glad we were on the phone. I did not want her to see my reaction. I was appalled. And angry. How dare she say that! That expression is fraught with meaning, not a lot of it good.  But wait. She was right. I am brain damaged.

I hate writing the sentence, much less acknowledging its truth.

“You need that like you need a hole in the head.”  Oh please. Don’t say that.

As a result of a problem with another surgery, my neck “fell down.’ I now have 2 clamps and 12 screws holding my neck up and in place.  “You have a screw loose.”

Even though it’s a joke, I flinch when someone who knows about my neck says it.

“You have it so much worse than I, so I can’t complain.”  Sure you can. Your misery, while you have it, even if it is just a bad cold, is as awful for you as my pain is for me. I know a cold vs. chronic pain is a mismatch, heavyweight vs. lightweight, but my pain does not negate yours.

“Life isn’t fair.”  “Whatever doesn’t kill you makes you stronger.”  The first is definitely true, but the second? Maybe.

When life, your friends, even strangers, hand you a cliché, when lemons seem the order of the day, sometimes you just need to ignore it and do something nice for yourself.

Me? I think I’ll go make some lemonade

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Reprinted from my column on National Pain Report.
( http://americannewsreport.com/nationalpainreport/a-pained-life-how-words-can-hurt-8819942.html )

SPRING CLEANING.

 Ah spring!  The time to go through the closets, throw out clothes we don’t want or need anymore (or fit in), put away winter things and bring out the spring outfits.

I go into my pantry and am surprised, as I am every year, to see how many cans and jars have passed their expiration dates and need to be thrown out.

It is a good time too to look at the people in our lives and see if any of them may have also passed their expiration dates, not just friends, maybe some family and medical people as well.

I used to live in New York City, but Dr. Michaels*, my neuro-ophthalmologist, was in Philadelphia.

He suggested I find someone closer to home. He recommended Dr. Smith* and I made an appointment to see him.

I was uncomfortable from the moment I walked into Dr. Smith’s consulting room.  It was a hot summer day. The air conditioning unit was on. Any air blowing on my face was a major trigger for my neuralgia pain.

“Could you turn that down, Dr. Smith?  It is really setting off the pain,” I asked.
“If it really hurt, you would just turn it down yourself,” he replied.

No caring, no comprehending.  I stayed with him anyway.  I felt I had nowhere else to go, no other doctor I could see.  The pain speaks to me: “You have to have someone and Dr. Michaels has no other recommendations.”

I did not end our relationship until the day I read his chart note: “There are days like today I believe in her pain.”

Keeping him for my doctor as long as I did was a bad decision.  I knew he was wrong for me and yet I stayed.

Which reminds me of a friendship I had.

When I moved to a condo in my new town I quickly became friends with a neighbor. The friendship was based solely on neediness, on both sides.  For me the need was being alone in a new town, having no one, and having pain 24/7.

Every 3 or 4 years, she would break off the friendship.  Her reasons were specious; it was just something she needed to do.  Three or four months later she would call me as though nothing had happened and we would take up the friendship again.

It was clear to me that I needed to end the friendship, but I needed a friend more. Because my need was greater than the pain of the breakup, I went back.  And back again the next time. It was only after the fourth time she ended the friendship that I realized this was something that needed to be ended.

How many times do we look at the toxic people in our lives and decide our need of them is greater than the pain and problems they cause?

The pain often makes us needier then we might otherwise be; the ability to get out and about harder for us, the need for comfort and care greater than accepting that the succor is not coming or comes in a hurtful way.

“You are malingering” “You’re making this up.” “It really doesn’t hurt that much.”  “Why can’t you do the shopping today, why do I always have to do it?”

It is hard to spring clean.  But it needs to be done.  Whether I shampoo a rug, throw out those torn stained favorite pair of pants or say goodbye to people whose lives have been intertwined with mine but are hurters not helpers, I am always surprised at how much better I feel.

It is almost funny when I realize how hard it is to think about doing these things, how difficult they look and feel in my mind, and how much easier they make my life once I have done them.

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This is reposted from my new column for the National Pain Report.

IDIOSYNCRASIES.

It occurred to me after reading the suggestions people gave me for how to deal with the issue of my eye pain being t riggered by a lit candle that one of the problems we face is the individuality of not only the pain, but the minute specifics of it.

The candle hurts my eye.  Can you patch it?  Can you wear sunglasses?  That should fix it.

Normally, in the common world, it would.  In my world, it does not.

It is not the brightness of the candle.  Well, it is the brightness but not the brightness alone.  The movement of the flame is the problem.

My eye cannot tolerate movement as I read or follow someone walking, for instance.  For some reason, no one has figured out why, the pain is also quickly, immediately, triggered by movement in front of the eye, even if the eye itself is not moving.

There are some forms of M.S. where the person has trouble walking one day and the next they are fine (before it happens again)

You had the cane on Wednesday.  You didn't need it on Thursday, so why are you using it today?

(When I used a walker for a few weeks, after a surgery that left me very weak and more balanced impaired then usual, I was very surprised when a man I vaguely knew from my apartment building saw me on the street.  He stopped me.  "I saw you in the foyer not using your walker.  Why are you using it now?" I was flabbergasted, that he noticed and even more so that he questioned me about my use of it.)

Some days our pain is bad, or our physical abilities less then the day before. 

I understand why someone might question what they do not get.  Your eye is not moving.  Why would watching someone fan themselves hurt your eye?  You could get around yesterday but you can't today,.  How come?  You were able to bend down to tie your shoes an hour ago but you can't pick up the towel on the floor now?  It does not make sense.  I know even for me it sometimes seems surreal.  But, it is real. 

How do you explain?  Do you need to explain?

Life is full of inconsistencies.  Why should chronic pain be any different?

What do you think?