Thursday, January 24, 2013

I've been away awhile, and in the spirit of honesty in which I created this page, I'll tell you why:

I wasn't sure that I had any "right" to tell people what to do.

Let me put that better...I wasn't sure what qualifications I had in this area, other than being in pain. I wondered if people would care, too...I quess it was all self-doubt.

I'll enlarge upon this as I go along, but I think, for now, I'll leave it like this: please feel free to respond to my page if you want. It's the only way I'll know if I'm hitting the mark, or I'm failing.

I'll be writing more this afternoon.

Sunday, February 26, 2012


As I think about how to begin this page—whether I simply talk about myself, or give advice, or research work having to do with it—I find that I keep running across certain bits of information I have found to be more important than the others. 

The number one piece of advice that I can give you is actually twofold: BE YOUR OWN BEST ADVOCATE and KEEP RECORDS.

Why?  I can’t tell you the number of times I hurt like crazy all week, and then go into the doctor’s office and my pain level is a three.  I always try to be honest, for my own reasons—I know that once I make it a practice to lie or stretch the truth it becomes a snowball; the next time I go in I bend it a little more because I need to express that I’m hurting more this time, and then the next time, and then more the next time….there are only nine numbers on the chart, and even if I’m using plusses and minuses it’s not too long before I’ve run out of any sensible form of evaluation.

And believe me, you need to be honest if only to yourself.  You need to keep track.  You need to know when you’re hurting and if there’s any pattern: morning more than night, winter more than summer, weekends or Sunday or before a storm, or after you eat…whatever.  But be honest.

Here’s a small list of what to do:

1.  BUY A BOOK: It’s like purchasing a membership that makes you go to the gym.  If you buy a book, you’ll write in it. 

2.  USE A SCALE: Here’s one I like.  It’s from a group whose acronym is TIPNA: The International Pudendal Neuropathy Association, and it’s found on this page:  Apparently it's written by a man named Jack Harich, and it was first published in 2002.  I'm very thankful to him for it, and I hope I've credited him well enough to avoid a copyright dispute.
It’s a 10-point system, and it breaks down the pains into three areas…Mild, Moderate, and Severe.  It uses lots of describers, like “You find it hard to concentrate.”  One of the best things I like about this scale is how it gives you analogies: bee stings, migraines, toothaches, etc.  It’s easy to understand and be consistent this way.
PRINT IT OUT!  It’s a terrific way to keep track of your pain.

3.  KEEP THE NOTES FOR YOU ALONE, AND BE HONEST:  Don’t exaggerate…only you will be reading this.  Note when you feel this, and if there are any conditions you think are noteworthy (and you’ll probably get a better sense of what’s “noteworthy” as you go along).  I refer to it when I visit the doctor, but I don’t hand my diary to him…it’s for me. 

Don’t  COMPARE with others…your 3 could be their 6.  I find that most people exaggerate pain just like they exaggerate in other areas.  No one suffers like they do.

I repeat: BE HONEST!  I have found that an extended 3 can outdo a short 5, and has!  Don’t exaggerate if you want this scale to work; you and I know you hurt, but it varies.  This scale says, next to 10: “Most people have never experienced this level of pain.”

4.  MAKE IT A HABIT: Keep taking the notes –BRIEF notes—at a certain time every day, when it’s easy: during the Today show, or Letterman, or at lunch…whatever.

5.  WHERE DOES IT HURT?  Write down you feel a 3, and where you feel a 6.  What kind of pain is it?  (Sharp, fuzzy, aching, stinging, hot, electric, etc.)  Develop a shorthand.   Learn what your  doctor asks, and see if you can supply that kind of info.  I find your doctor can’t do anything if you don’t give him precise info.

My relationship with pain may not be at all like yours; I am sure everyone’s varies.  But keeping a good record of your pain will help you understand your own daily trauma and make it easier to report when you get to the office.

I hope this helps.

Monday, February 20, 2012

My Battle with Pain

I used to be a fit, healthy English teacher until I broke up a school fight in April 1985..and later that night began a 27-year struggle with chronic pain that I will likely be waging for the rest of my life.  I retired on disability in 2008.

Throughout my battle—because that is what it is—I have found out several things about pain:
1. That pain is an evolving thing, changing form and manner to attack me in ways I can not foresee; and
2. I will probably never win this battle; and
3. Though it is a physical affliction, it can at times attack me psychologically and alter the way I interact with the world; and
4. Despite its sometimes overwhelming nature, there are techniques I have learned to live with it, and still lead a life of quality and satisfaction; but
5. It will take the work of others to help me through, and I must accept this and let people in to the shell I sometimes build around myself to deal with it.

I am creating this blog for several reasons that can probably be further distilled, but the first one for now is simply this: I have always liked writing, and I have found that it can help me in the manner a good therapist can help others.  I believe writing is even now a dialogue of sorts between me and my assumed audience, who may simply be me someday down the road.  When I write I choose words and phrases for specific reasons, and that forces me to think analytically and, I hope, honestly.

Over the years my friends have often told me to create this blog…people who know me and whose opinions and faith and support I have grown to trust and believe in, and though it took quite a while for their suggestions to sink in, I have come to the point where I also think that this may do some good…

But here’s the catch, and it’s as true for me as it is for anyone else who reads this: this blog is about pain—MY pain, and what it has done to me, and how I have dealt with it.  While it is my hope that someday another person or persons may read this, and my blog may have a positive effect on others, I do not want anyone to think my writing is meant to supplant medical advice or anything of the sort.  I cannot prescribe solutions for others any more than I can prescribe medicine.  That is NOT the purpose of this blog. 

What I am hoping for is to come to a better understanding of my own lifelong struggle with chronic pain, and to perhaps make a difference with others who hurt by suggesting that they may come to terms with their own struggles in their own manner.   What I have found out is not only that must I become my own best advocate,but also that there are others out there—good, caring people, both personal and professional—who have dedicated some portion of their lives to help me.

Together, I hope I—we—can get a handle on this thing.  We may not beat it, but then again it will not beat us.