Opioid taper – please comment. Your story matters


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Opioids

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Americans use 80% of prescription opioids in the world.

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If you have voluntarily tapered off opioids, please comment

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In 1991, America was not even among the top 10% prescribing opioids for cancer pain. Now look where opioid induced pain has led the way medicine is practiced. We have created disability like throwing gasoline on fire. It is costing lives.

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Patients with intractable pain who have failed all  procedures, nerve blocks, injections and opioids, why are they still taking them if pain is still severe, if they are not able to function? They do worse than nothing.

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Opioids create pain: They trigger the brain to produce pro-inflammatory cytokines that cause pain. It is drowning in a universe of delusion to ignore the data. Clinging to fear.

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Data: Here’s an old Stanford study from 2005 Journal of Pain:

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Opioid Tolerance and Hyperalgesia in Chronic Pain Patients After One Month of Oral Morphine Therapy: A Preliminary Prospective Study

 

Abstract

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There is accumulating evidence that opioid therapy might not only be associated with the development of tolerance but also with an increased sensitivity to pain, a condition referred to as opioid-induced hyperalgesia (OIH). However, there are no prospective studies documenting the development of opioid tolerance or OIH in patients with chronic pain. This preliminary study in 6 patients with chronic low back pain prospectively evaluated the development of tolerance and OIH. Patients were assessed before and 1 month after initiating oral morphine therapy. The cold pressor test and experimental heat pain were used to measure pain sensitivity before and during a target-controlled infusion with the short-acting μ opioid agonist remifentanil. In the cold pressor test, all patients became hyperalgesic as well as tolerant after 1 month of oral morphine therapy. In a model of heat pain, patients exhibited no hyperalgesia, although tolerance could not be evaluated. These results provide the first prospective evidence for the development of analgesic tolerance and OIH by using experimental pain in patients with chronic back pain [my emphasis]. This study also validated methodology for prospectively studying these phenomena in larger populations of pain patients.

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Perspective

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Experimental evidence suggests that opioid tolerance and opioid-induced hyperalgesia might limit the clinical utility of opioids in controlling chronic pain. This study validates a pharmacologic approach to study these phenomena prospectively in chronic pain patients and suggests that both conditions do occur within 1 month of initiating opioid therapy.

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Of course when you stop the opioid, the system rebounds like wild, stronger pain. It’s one thing to publish this important study, but how to offer better relief than the adjuvants that failed?

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How has opioid’s overwhelming inflammatory imbalance in brain affected the ability to recover? ever. The brain is maxed out. Is it permanent? How long does this last? There are those who think, I won’t taper off, I’ll wait till the very last minute, do rapid detox and expect instant change. Do not allow brain recovery. Opioids are still in system for weeks after stopped.

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People more likely to remain on disability if opioids are even once started. Doctors then prescribe tramadol, Nucynta, buprenorphine in patches or film for sublingual use. Those are still opioids.

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And one week ago, two more opioids approved. They make billions, guaranteed lifelong. Why should pharma try something that will actually relieve pain without causing inflammation centrally in brain?

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The problem is that patients who taper off have been offered nothing adequate to replace the opioid.

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The question is, if FDA refuses to approve any more opioids, will pharma do anything to relieve pain?

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The material on this site is for informational purposes only, and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, please telephone my office.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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18 Responses to “Opioid taper – please comment. Your story matters”

  1. captfun Says:

    I have full body CRPS 2. Been on opiates for 3 yrs and QUIT taper over 3 mo. The pain crippled me. Wheelchair. Loss of freedoms.

    Started back w a hardcore regiment of strength and flex training COUPLED w Vikes split judiciously thought the day. Opiates are the only pharm that DO work…some. Now, I have severe back stenosis and ddd so who knows.

    I think u are doing a disservice not being ‘tempered’ w your anti opiate rants.

    Kindly,

    Rich

    Sent from my iPhone

    >

    • Nancy Sajben MD Says:

      My rants? This is an educational site. We need research and something better for pain relief than opioids that cause pain.

      Drug companies make billions on one new opioid after another. No incentive to do anything except a drug you must take for the rest of your life. Like antibiotics, if you only need it a short time, there’s no profit for them. They go for addicting opioids that fail to help chronic pain but do relieve anxiety while they keep you narcotized. I am sorry to hear that you have mechanical problems and pills do little until those are corrected.

      Too many MD’s do not know how to relieve pain after opioids are off. Where’s the research to help 50 million who have chronic pain?

  2. Joy Says:

    In 2013 I had “routine” hernia surgery (two left inguinal) by a general surgeon who used PHS mesh that was too large for my small frame and I went through a very difficult time before I found out what was wrong and a surgeon to help me. Fortunately one of the best surgeons for this now well-known problem took my case in late 2014 and removed the mesh, very complex and difficult to do as it had wrapped around arteries, damaged nerves and the original surgeon had tacked the mesh to my pubic bone to get it to “fit”. The surgeon removed this meshoma and performed a triple neurectomy. I was glad to get the mesh out as it would just have continued to cause problems, but I continue to have severe pain almost 2 years out, and the area (left groin area) is still swollen and tender. My rescue surgeon thinks the tack on my pubic bone may need to be removed and my bone debrided, and that there may be another “sports” hernia behind the original hernia site and, reluctantly, I have another surgery scheduled for later this year. I have been on tramadol (and gralise and lidocaine patch, and TENS) since the first hernia surgery. I am familiar with the research on opioid-induced hypersensitivity and worry that the tramamdol (6-8 50 mg pills a day) may be making things worse, although it gives me considerable relief for a few hours. I have tried going off it, but as you well know I am sure, withdrawals are hell with this drug, and my pain has flared to unbearable levels. For someone in my situation, in your opinion, is it best to just try to live with the pain and get off the tramadol than to stay on it, knowing it may make it impossible to be pain-free? I have a professional career (college professor and researcher) and want to continue to work as long as I can; I need something to help me be functional, up-beat and optimistic about my situation, and find my religious faith and meditation very helpful, but, sadly, that hasn’t been enough. I see a new pain management doctor on Tuesday and would like to discuss my concerns about my current regimen with him, as well as my reservations about the upcoming surgery, which has considerable risks (and based on these prior experiences, I am not feeling very lucky!) but I read your interesting blogs and am interested in your perspective, too. I have tried adding amitryptiline but I developed terrible, potentially career-ending jaw spasms that affected my speech, and hand tremors, and had to go off it. I am terrified of getting hooked on narcotics, especially since this may well be a very long recovery ( I am 57) and I want to be fully present for my life, cognitively, including for my family who I care very deeply about. Thanks for any input, and especially for your interesting blog.

    • Nancy Sajben MD Says:

      The creation of one more opioid after another and another and another makes billions for pharma and that may be why pharma has no interest in relieveing pain, just more opioids and more billions.

      People are on opioids for the rest of their lives, often starting before they are 20 years old.

      There is no incentive for pharma to create better.

      How can anyone advise without clinical research? — humans, not rats.

      How can we take 50,000,000 – 50 million -people with chronic pain who have been started on opioids 20 years ago, or 20 days ago, and unthinkingly without any data, do what the CDC wants us to do? Cut back opioids—– because addicts are killing themselves.

      Opioids are given freely without trialing methods that I have found help some, using glial modulators that reduce inflammation. I have no data how many it can help. No money, no research.

      All I can say is that there are cases of extreme pain from many causes, I have witnessed complete total remission for years, partial remission in others, for years, extraordinary beyond anything I’ve seen before but never with opioids.

      Opioids have a role. What is it?

      Nothing works for everyone. No data, no prediction. There is no interest in clinical research of pain in this country. Just CDC dictates and people doomed the rest of their lives to see a doctor every month for opioids.

      What works? Capitalism. Money talks.

      No easy answers.

      People accuse me of ranting against opioids, but I prescribe them. I have also seen better without them.

      If some of my patients on high dose opioid have urgent need for major surgery, I doubt anyone would be able to increase their dose. There are patients whose body cannot take more without overdose, what happens when they age and liver, lungs and kidney cannot tolerate. What then?

      What then when they develop chronic bronchitis and lungs are not able to tolerate the doses they’ve been on for years? Or when they require dialysis from renal failure?

      For a 20 year old, does that person come to office every month for 70 more years? How about when they develop sciatica or crippling pain from another cause and need something for pain?

      What do we do? Guidance is not there.

      I have only one hope, that $10 million will be given to Xalud Therapeutics to begin clinical trials on IL-10.

  3. Nancy Sajben MD Says:

    I am so very sorry to hear about the horrific mesh surgery. I have seen nothing but extreme pain created by mesh. Surgeons do not have to do clinical trials to use whatever device they wish. A nightmare.

  4. goldenoar Says:

    I have successfully tapered off completely from opiates, with my doctor’s help. We began by slowly lowering my dosage over months. I had been been taking high doses of morphine for extreme pain over many parts of my body. Numerous diagnoses. Everything from severe disk degeneration in my lower back causing rubbing of the displaced L5-S1 because of the nearly complete loss of that disk with 9mm spondylolisthes, to both shoulders simultaneously with terribly painful adhesive capsulitis, to hands and feet subject to fiery arthritis-like flares. It was debilitating pain. At first and for many months, opiates helped immensely. But over the course of opiate treatment, the side effects became unbearable for me. Constipation, bloating, breakthrough pain, mental fog, and loss of motivation to pursue the work projects I love so much. And it just kept getting worse. So, it was time for me to get off the opiates. Period.

    The slow taper over months under my doctor’s close care and supervision brought me to the point where I felt ready to be completely off the opiates. I knew it would be an uncomfortable week or two to get past the remaining physical withdrawal part. But I had made a very strong decision to stop the opiates. That helped. And so did high CBD medical marijuana. (I live in a state that permits Medical Cannabis to be dispensed to patients with a doctor’s recommendation and supporting medical reports.) With the addition of high CBD MM, I was/am able to alleviate my body pain, and stabilize my entire system over time. No scientific study to date to my knowledge has looked into high CBD MM balancing out one’s entire system, but that is how I felt then, and feel now. The pain relief for me has been excellent. But this whole area needs further study!! High CBD MM is definitely not for everyone. But it has been a godsend for me. I am off opiates completely. I am so deeply grateful for getting my life back. And deeply grateful to my recommending doctor, and my other doctors who have been so supportive in this life decision. Thank you, all.

  5. Christine Says:

    I am a 65 y/o nurse practitioner who sustained a Jones fx of 5 th metatarsal requiring 4 months non weight bearing ,immobilization in cam boot who returned to work with my ortho approval 3 weeks into the injury.Being a psychiatric nurse practitioner I elevated my leg on a garbage can and pillow for periods of 8 hrs at a time.my pain in my foot and ankle increased as my bone healed but my MD did not hear my complaints. I would come home and aggressively ice as this was the only thing that seemed to help and reduce the swelling. After 2 months of no healing a bone stimulator for 2 months finally healed the fx. During this 4 month period I was prescribed Oxycodone 5 mg to take 1 to 2 times daily. I also used supplements,wobenzyme from Germany and accupuncture to try to promote healing. Little did I know that the aggressive icing the constant inflammation with severe and prolonged immobility and the pressure of my leg resting in one position for long periods would result in a healed bone but a dx of complex regional pain syndrome which changed my life dramatically. My original orthopedic did not dx Crps but Surat nerve damage. However my foot and lower extremity was mottled, cold,and it felt as if I had ice picks stabbing me throughout my ankle joint and outer aspect of foot and leg….also continued swelling. Many MD appointments and a neurologist after many tests including 3 phase bone scan dx Crps. I was prescribed elavil and oxycodone increased to 10 mg bid. That was 7 years ago..I continued working so tried very hard to not take during the day .However after a few years my tolerence increased and so did my dose. At the end of 7 years I was taking 40 mg of oxycodone immediate release and became concerned that I constantly felt withdrawal symptoms and was taking them just to feel NORMAL.when I expressed my concern I was told that I would need these meds for the rest of my life and that my dosage in 7 years was not increased significantly and I never misused them. Then this year with the opioid epidemic I was told I needed to come off them. I was in agreement but my doctors reduced my dose by 50 percent the first month and 50 percent the 2nd month. Needless to say after 5 weeks of this rapid taper I was becoming very tired of being sick with GI issues,extreme restlessness tachycardia insomnia and restless leg syndrome. When I confronted him regarding this rapid taper after 7 year duration he became upset and stated I might have ” something wrong with my mu receptors” as I should not be having these issues. I bought the CDC guidelines in for him and finally after reducing 30 mg in 2 months he agreed to allow me to slow my taper down as the percentages of the drops were now higher as the dose was low..I went to a nutritionist due to my extreme fatigue poor concentration and mood lability and was prescribed Balance D to try to boost my dopamine levels.She is also a chiropractor who uses kinesiology and also prescribed various herbs such as passionflower valerian pan ginseng which helped. I still was having tachycardia with PVC and had to see my cardiologist and have halter monitoring. My prescribing MD would not give me clonidine as ” “he wasn’t running a detox unit”but my cardiologist did and it has helped me get through the first 3 days of a cut. In 3 and 1/2 months I am now down to 2.5 mg q 12 hrs or 5 mg daily but am finding the cuts harder the lower I get.i hope to be off in another month depending on how I adjust but there are still many sleepless nights sometimes for 72 hours. My brain has been hijacked and I know I have to eat well, take vitamins and exercise in order to boost my own receptors to do what the drugs did for 7 years.i feel that my pain was increased the first 2 months but now that I’m only on 5 mg daily I see an actual reduction. I will never go on them again. I was given trials of high dose gabapentin and now being offered lyrica which I declined. Unfortunately I live in NY where despite my dx being include in the very restricted number of dx it is only being offered in capsules,not covered by insurance including the monthly MD visit and Monthly u fox to make sure one is not diverting. Not sure who was on that medical committee as not many patients will be able to afford .i have been using DMSO and NAC since dx as I researched Netherlands protocol so am hopeful that this Peapure may help me..Being in the healthcare field fo 40 years I feel abandoned by the very practitioners that were supposed to help me. I am now more aggressively researching and feel I need to be very active in my future treatment options. I am GLAD that I will soon be done with these brain damaging drugs although for 7 years I thought it was a necessity..Going through this process reinforced what it was doing to my brain and all the willpower motivation and commitment would not slow my heart rate. Doctors who prescribe these powerful drugs need to be more educated and have more understanding that a 7 year duration of prescribed meds cannot be stopped in 2 months particularly without any medications to help with taper problems. I’m glad you had a more knowledgable and compassionate MD

    • Nancy Sajben MD Says:

      Thank you for your experience. Withdrawal is different for everyone, but there is no justification for 50% drop unless other medical issues make it necessary to do so, such as falling, or cognitive, renal and pulmonary issues.

      These comments in particular are noteworthy:

      “I feel that my pain was increased the first 2 months but now that I’m only on 5 mg daily I see an actual reduction. I will never go on them again.”

      Lyrica capsules only available in NY: “not covered by insurance including the monthly MD visit and Monthly u fox to make sure one is not diverting.”

      u fox typo? Urine drug screen – who is getting paid to do those? Monthly for 7 years? Some pay $750 for each urine test.

      “Doctors who prescribe these powerful drugs need to be more educated and have more understanding that a 7 year duration of prescribed meds cannot be stopped in 2 months particularly without any medications to help with taper problems.”

      Amen

      Let’s have some research.

  6. Christine Says:

    Thank you for your website. Or has been very helpful and supportive ..I just posted my reply to my own experience with my opiate taper

  7. Nancy Sajben MD Says:

    Don’t get it? why would I waste months of my time every year writing in this space if I don’t get it?

  8. Christine Says:

    Sorry for the spelling errors in my first post. I also have pseudoxanthoma elesticum a rare genetic d/o that causes mineralization of arteries and despite monthly intraocular injections to both eyes for 6 years recently lost my central vision in left eye. While I was prescribed oxycodone initially for many years I was never u toxed But for the past 2 years my MD tested me monthly and my insurer paid close to 900 dollars each month for this Very comprehensive test.Actually CDC guidelines do not promote this but rather state if a pt needs to be tested monthly they probably should not be on opiates. I never failed a test, never ran out of meds never in 7 years had any issue with my scripts except at times having to go to multiple pharmacies as in NY many pharmacies have limited supply or stopped dispensing it altogether as where I live the opioid epidemic is problematic. My response regarding insurance not covering was not in regards to lyrica but our very new restrictive medical marijuana laws. Not only does it require a monthly visit and utoxing BUT now it is Cash only per my MD including his visit for the script. And only available in capsules sold by one company??? Not trying Lyrica is due to a bad vision and cardiac reaction to neurontin and that taper took me 3 months. I understand that Lyrica is fairly chemically similar to neurontin. I have found a podiatrist who treats CRPS and he will prescribe the compounded cream with ketamine. My MD would not as the ketamine inclusion entails a script be mailed in to DEA. This will cost me about 100 dollars monthly, I also obtain my DMSO from Dr Jacobs lab in Oregon .He fought the FDA for many years. I find a 60 % solution 3 times daily topically has helped. That costs about 70 dollars monthly. All my present visits to certified nutritionists and chiropractor for kinesiology as my back frequently goes out due to altered gait are also out of picket. So yes integrative approaches to pain are the solution. But insurance is not paying. I’m now also paying out of pocket to see a therapist to help with self empowerment as I felt there was something wrong with me in that I couldn’t taper as rapidly as he thought I should and also understand that my approach was creating some of the issues. For example my tachycardia made me fearful I would have a heart attach as I have pre existing cardiac issues from PXE but now have been tested and given clonidine to take in smal dose for first 48 hrs of a bad reduction. Not all reductions have been problematic..I tried to stay on a dose for 21 days to see if it made a difference from 6.25 to 5 mg but still suffered for 3 days with sweats rls and needed the clonidine. By day 4 ok then about 5 day to hold the dose then I give myself about a week to have my brain feel almost normal.my next reduction will be 1.25 of the 5 which is a 25 % reduction which may be too much .But can’t cut the 5 mg tab any smaller. It is doable and again I’m glad it happened I just don’t have many alternatives at this point. I plan on doing some water exercising in hopes of strengthening my foot and leg and body and mind…But my gym membership will also be “out of pocket” our health care system needs dramatic changes to accommodate the health and wellbeing of its citizens. Again Thank you for all your research. I’m going to try the Peapure . Is it only available in the Netherlands?

    • Nancy Sajben MD Says:

      $900 every single month for urine toxicology (street drug) tests – not for care but for urine test and you never used street drugs once, never were on high dose opioid. I feel compelled to think the medical board might be interested in that.

      May comment more later, this is completely shocking that doctors do this to good people who need help.

      I posted on PEA a couple weeks ago – good news. Please read that, top left column for recent.

      Bless you. I am so very sorry to hear these blood curdling stories. Who in good conscience does this to someone and is able to look them in the eye? Bankrupting patients and/or their insurance coverage.

      How much is cost of medical insurance impacted by these $900 monthly urine drug tests on people who have never taken illegal drugs? I am so deeply sorry.

      • Christine Says:

        Thank you for all your research and time and compassion to a field I have found that many practitioners find frustrating as patients don’t always get better and there are no clear protocols especially for RSD, yes my doctor whom I have seen for 20 years who I worked with in an ER setting while practicing as a consultation and liaison psychiatric practitioner admitted that the testing was being done to prevent DEA problems. Despite Never using illicit substances never failing he tested me monthly for the past year. Only since my last prescription for the 5 mg daily was I spared in New York on Long Island even pharmacists clerks would look at your script and sometimes comment that Pharmacys were being robbed due to These scripts. I changed due to same and found an extremely supportive and nonjudgmental pharmacy that I have been with now for 3 years. They have been more supportive of my taper and actually pointed out to me they thought it was too rapid. Not once has my MD asked about my pain levels. It’s almost that I was being prescribed for a nonexistent dx. I already emailed the company that sells peapure to inquire if there were any decrease in platlets or bleeding risk as with my PXE I cannot take NSAID ASA or SSRI due to risk of bleeds. Obviously New York has taken a hard line on these drugs and Pain Management Clinics tell you upfront that they are not prescribing opiates. Most are only doing injections or blocks which from my research do not work and are invasive and have adverse outcomes at times. I will continue to follow your site as now only with topical a and today walked about a mile to try to boost my brain and build strength and have a flare. My flares in past reach a level 8 but usually within 24 hours return to my baseline of 5 or 6. It’s just this constant feeling of my foot and leg being in an ice bucket accompanied but sharp shooting pains that become very tiring. I do have knots slog the outer aspect of leg and read your piece about getting them out and will ask for a script for PT and see if that will help. I have had PT multiple times but never with massage. I also years ago found working out in gym increased my strength and decreased pain as long as I didn’t overdue. Time to get healthy. Thank you again. It means a lot. There is so much shame to taking these meds that I was almost relieved to be told time to stop. I know the shame is not rational I know my pain is real and constant but most people can’t see or understand.

        • Nancy Sajben MD Says:

          Shame is an American past time. Fear, bullying, shaming. It’s not always the drug or the pain that leads to suicide, it’s the bullying and shaming.

          My patient this morning is losing her 13 year marriage, because surgery for a tumor caused disability and pain. Every one helped initially, she was disabled. But after four years, even husband’s early support has turned into attacks and complete failure of understanding and compassion.

          The nicest person in the world will soon be a single mother, disabled, with limited ability to support herself.

          • Christine Says:

            You must be a wonderful person besides a brilliant researcher/physician.your ability to maintain your humanity and empathy is truly remarkable.So many healthcare practitioners have lost that…many reasons but not acceptable.Im sorry about your patient. My 40 years in healthcare has provided me with some observations that are not always good. in my field of psychiatry where empathy is key to hearing your pts it was lacking in many of my colleagues. I always tried to give my patients the best of me…not just my knowledge base although that is certainly critical but my personhood as well. So my own experiences have been at times demeaning and do create feelings of despair at times. Just remembering your former self can be distressing. I feel coming off the opiates have stopped an emotional numbing that was occurring in me and so now have been seeing a therapist to deal with issues that are now surfacing.its a journey that I want to take. I may not physically be able to be my former self as I was quite athletic but I am going to try to be the best self that I can. These were thoughts that I wasn’t having while on the medications

            • Nancy Sajben MD Says:

              It is very difficult to let go of things we have become attached to: health, function, ability to work, relationships.

              Nonattachment is a constant practice. Attach to the highest, to that which is infinite, nonchanging, not to that which is constantly changing, disappearing such as the body, the mind. They change, we lose them, we mourn and get pulled back into what was, not what shall be.

              The body is not the same as it was yesterday or minutes ago. Cells die, change, new cells replace those that are used. Red cells, white cells live only days. Some intestinal cells are only short lived. Hair, nails grow and are replaced. Cities and places change. There is constant change all around. We cannot count on anything to remain the same, but we mourn. Negative thoughts weaken. Creativity and dreams bring strength and something to build upon. Visualize and become that. Imagination becomes realization, sages say.

              Kalahari Bushmen say, “There is a dream, and it is dreaming us.” Our consciousness is not yet our total self, not even slightly a tiny part of who we are and have always been. We must realize who we truly are. The most exciting journey of our lives is yet to unfold. We must let go the pain long enough to realize that. Very few have achieved their highest potential. So many see the mountain; how few begin to climb.

              At some point, we must go forward. Attach to the highest, to that which is infinite. Count on nothing and no one, realizing the world is full of pain, momentary pain, momentary joy, love and joy, good and bad, nothing is forever. We like the joy to last forever, but must accept all. We are not alone. We read the wisdom of the sages, prophets, messengers, poets from all paths who point the way. They say endure, endure, endure. Squeeze all the juice from the orange. Live to your fullest potential, find who you are capable of becoming. Never give up.

              Our inner landscape is part of our wholeness – the latent qualities of our own being. The wonderful thing is that our dream is our own.

              • Christine Says:

                All I can say is with much gratitude THANK YOU. You have never met me never treated me but we have connected…I thank you


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