November 1, 1999

      It's good to hear from you.  You wrote, "If a person uses narcotics to control pain & DOESN'T question there use from time to time.......then I believe there may be cause for alarm....."

      I got to thinking about that.  Addiction is "the uncontrolled compulsive use of a drug despite the fact it is doing you harm."  Less than 1% of chronic pain patients taking narcotic medications are addicted to them.
      Those of us who use narcotics are very much aware of our usage.  (Or should be, as you point out.)  For those of us who benefit from them, narcotics are a very important part of our pain management plan.  Without them, our ability to cope in *all* areas of our lives becomes severely compromised.
      It's vastly important to monitor ourselves (for effect) and to be able to communicate all of our concerns and input to our doctors.  We're a team, our docs and ourselves.  We're both responsible for how well (or not) the medications we take are working.  Finding the right drug and dose can take considerable time and modification.
      I keep a daily log and I discuss my medications with my doctor every time we meet.  He has no problem with my usage of narcotics.  Without them, my ability to function would be severely limited.  Without them, the pain takes all my energy just to maintain.
      I'm currently taking OxyContin and also codeine (without Tylenol) for breakthrough pain.  My doctor has recently suggested that we up the OxyContin dosage or go to a 3X a day regimen.  I'm not getting quite enough pain control, and I'm not taking more than 2 "rescue doses" a day.  I want time to discuss this more thoroughly with my doctor although I'm well aware that something needs to be adjusted.  I've always hated taking pills, and I don't like the trade-off of side effects that often goes hand-in-hand with taking meds.
      Fortunately, I don't develop tolerance easily.  My concerns about increasing the OxyContin dosage are more about feeling lethargic and having some concentration and short-term memory problems. I have problems with constipation and nausea, too.  The thought I put into all this is an example of how we have to monitor ourselves and use our own judgment.  I'm a part of the decision-making process, but my judgment would be faulty if I didn't rely upon the expertise of my doctor and discuss these issues with him.
      It's a sad fact that addiction and all the word implies (socially) often makes us fearful to discuss our drug usage and needs with our doctors.  I struggled along for years on minimal drugs thinking I was "strong" for doing so.  My attitude was, "It's not that bad...yet.  I can handle it."  The truth was that I wasn't "handling it" well at all.  Without the help of adequate pain control I was anxious, depressed, becoming withdrawn, and focused on coping rather than on living.  My doctors were finally able to drive home the point that pain was taking a tremendous toll on me both physically and emotionally and that it was not only right but necessary to treat it.
      You said, "If we didn't question our judgment on this issue, from time to time....then we probably are addicted."  May I suggest that rather than being addicted we're more likely afraid to raise the issue of narcotics usage at all?  We may fear that what medication we are receiving might be taken away arbitrarily.  We may fear being labeled.  We may fear the worsening of our pain and wonder where we're going to go from here and who's going to understand our situation and help us by continuing adequate treatment.  Along with these is coupled the fear of the financial and emotional burdens chronic pain can place upon our relationships although, paradoxically, narcotic usage can allow us to be more productive and more interactive.
      These fears are very understandable, considering the myths surrounding narcotic usage for patients with chronic non-malignant pain.  Fortunately, I believe these myths are being dispelled, albeit slowly.  And not *all* doctors, not *all* psychologists believe them.
      We aren't bound to stay under the care of treatment professionals who are biased against the use of narcotic medications as a valid and valuable treatment for chronic pain management.  Each of us has the obligation to question, to educate ourselves, to ask, to explore, to discuss.  And to keep on searching until we find educated professionals who will listen, validate, and treat us appropriately.  They *are* out there.
      Have a gentle day,

November 2, 1999

      You wrote, "My advice, if your psychologist does not believe in you or you can't build a working relationship, dump him/her and find someone else.  It's your mental health and you know you best."

      I'd like to tell you about my own experience with psychologists.  About 5 years ago, when the pain was making everyday things so difficult to cope with, I asked a psychologist friend to recommend someone from her agency who would be willing to work with me on issues surrounding my pain situation.  This, of course, translates to *all* issues of life.  One can't separate them.
      She recommended a bright PhD who has a background of working with people dealing with chronic illness and depression, mostly geriatric patients with whom he does a lot of volunteer work.  This was the beginning of a working relationship that can't be surpassed in my memory.  I worked with Dr. W for three years and the fruits of that relationship changed my life in ways that I couldn't have imagined were possible.
      Two important points: *I* made the decision and the choice and shopped around until the "right" person appeared.  When I first "interviewed" the psychologist I chose, I asked him all sorts of questions about his background, his beliefs and attitudes, and his particular "discipline" in psychology.  (I prefer someone with an eclectic approach.)  I explained my situation, outlined my expectations, and told him up front that I was here to do some serious work.  I also told him that I would never discount anything he suggested out of hand, but that I expected to be allowed to make the decisions.  (And would take my own bumps and bruises when I made a poor choice.)
      The second important consideration, for me, was financial.  I discovered that most mental health agencies work with a sliding fee scale.  Considering the fact that I had little income (until MediCare took over, with which they were well satisfied), they allowed me to pay $5 a visit.
      As I said, one can't separate pain, illness, and any other life issues.  In the course of my work with Dr. W we touched on *everything.*  He became my strongest advocate with my pain issues and often ran the gauntlet with me in dealing with the system and other professionals - always with a positive outcome.  He helped me to learn how to communicate better with professionals, friends, family, and the "public".
      Dr. W accepted me at face value and never once put me down or made me feel "less than" for being disabled.  I'm one of us who looks great on the outside and hurts like the dickens physically, something I had become "professional" at covering up.  He taught me how to be "real", how to say "No!", how to pace myself, how to take better care of myself, and how to find validation and make healthy choices in the relationships I kept up with.  He helped me learn to deal with my emotions in far more effective ways and he helped me find my self worth again under all the shame and guilt I was feeling for being "disabled."
      I can't emphasize strongly enough how valuable and important a good psychologist is as part of a chronic pain patient's treatment team.  Nor can I emphasize enough how important it is for *us* to choose who we will allow to treat us and work with us.  Trust is all-important and a relationship with a psychologist isn't built in a day.  It takes time and mutual exploration, just as any relationship does.
      Don't stay with someone who doesn't "feel right."  That doesn't mean you're always going to hear what you want to hear or that it's going to be easy.  It means that you will know who is "right" for you.  It means commitment and a lot of hard work.  But, believe me, it's worth it.
      Have a gentle day,

November 3, 1999

      You wrote, "I'm particularly interested in the over scheme of things, how we relate to pain in our lives and how we create a philosophy of pain.  Have you thought about why bad things happen to good people?  Surely you have given this some thought?"

      Yes, my friend, I've given it seemingly endless thought.   I'm glad I'm fifty(ish).  When I was younger, I had a stronger body to help pull me through, along with a certain amount of idealism.  When I got older, I've turned more to my heart and what's left of my mind to try to make sense out of my life.  ;-)
      The key word for my 40's was "resistance."  I reasoned, "It's not right for this to be happening~!  If I can just find the right answer, I can fix it."  The key word for my 50's seems to be "introspection."  I looked inside myself and discovered that all this is real, this is where I'm at.  *I* am real.
      Maybe these stages aren't just related to decades.  Maybe they apply just as well to chronic pain, no matter what our age.  I don't know the answer to that, but suspect it may be so.  Life isn't linear, it is cycles within cycles, all having some connection and some relevance.  And so it is, perhaps, with the experience of pain and disability.  Chronic pain is just another of the many life challenges that temper and mold us.  I'm beginning to realize that this is what life is:  a series of experiences in which we are presented with challenges and given the opportunity to fight, face, accept, and finally embrace them.  We weave the threads of all our experiences into the tapestry that is our life.
      In my experience of chronic pain and illness, there are balances.  Sometimes I have to remind myself of this, but there are aspects to chronic pain - if I open myself up to the *whole* experience, and not just part of it - that run the gamut from the deepest despair to sheer joy.  The despair comes when I think about what I've lost:  a livelihood I loved; an active healthy body that could make love with abandon, ride motorcycles or rapids with ease; run and play and climb and dance; and do all the things healthy people take for granted.  The joy comes when I think of what I've gained.  I've developed a sense of self that comes from looking inward and finding wholeness there, rather than focusing on whether or how I fit into others lives based on what I can do instead of on who I am.  Chronic pain placed limits on my "doing" and forced me to focus on "being."
      I've learned new skills from having to manage chronic pain.  I've had to learn how to cope and create a good quality of life no matter how bad my pain gets.  I get joy from the realization that I have hidden strengths that I never knew existed.  And I've created enduring relationships with people who are undergoing similar experiences and who have a depth and sensitivity that makes me realize how blessed I am to have found them.
      I've had many life experiences:  many of them difficult, all of them with a hidden gift in them.  Chronic pain has, by far, been the most challenging experience of all, and continues to be so.  But it, too, has its hidden gifts.  When things are bad, I've learned to look for any gifts I might have missed, much like a child looks for colored eggs in unlikely places on Easter morning.  When my strength is exhausted, I find that these "gifts" can sustain me until I regroup my forces.  (One of these gifts is knowing you and, so, knowing that I'm not alone in this.)
      I think one of the biggest hurdles I had to get myself over was this thing called "acceptance."  For me that doesn't mean that this is necessarily going to go on forever and resigning myself to my "fate." It does mean, however, that I have to accept where I am in this moment, for today only.  By breaking time down in this way, I'm much better able to cope with whatever is going on.  I am better able to manage the daily things or ask for the help I need to get through this minute, this hour, this day.  And, believe me, I don't always do it gracefully!  "Gracefully" often goes out the window when my pain level exceeds my threshold of patience and tolerance.  Asking for help and support has never been one of my strong suits.
      I don't view pain as "the enemy" any more.  If I were to hate and reject it, then I would be hating and rejecting a part of myself.  If pain becomes the enemy, then so do I, and I can ill afford to be at war with myself.  I am not my body, but my body - for better or worse - is part of me.  I can't change that fact any more than I can change the color of my skin or my age.  And, so, I accept even the parts of me that ache and burn and betray me at the most inopportune times. How can I do otherwise?
      I can't change my pain, but I can (and have) changed how I live now. I've learned who to surround myself with for support and comfort, who I can trust to go to for competent and compassionate help, and what I can do to nurture and sustain myself.  I'm getting a good grasp on knowing what I have to work with physically, emotionally, mentally, and spiritually.  Because of this, I'm not what I was before the pain, I am more.  I can't explain it, but my inner world, at least, is fuller, richer, and more precious than ever before.  I don't know that I would have discovered this ...depth of feeling without the challenges that living with chronic pain has presented.
      Do I like it?  Not by a long shot!  As I sit here writing this I'm wracked with pain.  It's been an especially difficult week and I can't seem to get comfortable no matter what I do.  But I'm not tormented by it.  I'm doing what I want to be doing, which is writing this to you; and that is only one of the ways that I keep the pain from controlling my spirit, no matter what it's doing to my body.  There's something about reaching out and touching others (and having others reach out and touch me) that transcends pain.  We touch, and the touching continues us.  Pain or no pain, we all need to be "continued."  None of us need ever be alone again.
      One of the things that has gone wrong in today's world is that we all feel so separated from one another.  If we only knew that no matter what our faith and beliefs are, no matter what our sexual orientation is, no matter the color of our skin, no matter what our background or health or education or financial status is - we are all in this together and the things that affect one of us affects us all.  Pain isn't something that is visited upon any of us for any particular reason.  It is - merely - one more facet of life like any other, and we do with it what we are able.  Pain isn't any kind of judgment about our worth.  Nor does any person, private or professional, have any right to judge or invalidate us because we are in pain or ill or disabled in any way.  We're all worthwhile.  We do the best we can, and that is enough.
      Be well, my friend,