dbrr wrote:Karen, thank you. I’m not sure anyone else has ever really understood what this feels like
I think we were destined to connect with one another, a virtual hand-hold cross the many miles, from Maine to Portland, Oregon.
Your experience with intractable, severe pain is valid. Your feelings are valid. You own no one an apology.
Only those who have misfortune of existing amidst the surreal experience of unrelenting pain can truly empathize and understand the all pervasive depths of pains' horrific grasp.
Of all the many complex health issues that I face, it is pain that has worn me down to my nubs.
I am a former marathon distance runner. I knew the internal experience of pushing my body to its existential limits, the rhythm of my feet taking me the full 26.2 mile distance time and time again. I knew pain before before I knew chronic ill health.
But the pain that has consumed me with the Addison's disease and subsequent avascular necrosis of my hips and jaws is beyond description. It is pain that is not mitigated fully by the full power of multiple narcotics.
How do we ask someone to suffer more, when they are already suffering?
The question of whether life trump's all . . . the argument of medical intervention against all obstacles . . . is a deeply personal lens and decision. I have survived a near death experience where I was neither here on earth nor in Heaven. I survived, by God's/Higher Power's grace, but certainly not by any action of my own. Wherever it was that I was, I was in perfect peace - I felt no pain, I felt no anxiety, as I had no physical body form. I feel uniquely qualified to judge my own life's reason and purpose and decision to enroll in Hospice as the right choice for me. My body is tired and exhausted from the fray of living with the frailty of serious, chronic illness, over many years, and its limitations and pain as a constant and unwanted companion. I am 56 years of age.
My greatest fear has not been death, but rather living an existence where I am consumed in pain and no longer even functionally semi-capable. That I am at this cross-road has made Hospice a natural decision for me. My only regret is that the process is taking a bit longer than anticipated. My body remains amazingly resilient - almost to a fault.
I would encourage you to explore the option of Palliative Care. Palliative Care will open up avenues for you in options for the humanity that is care and comfort. The designation of "Palliative Care" on your medical record will remove you from the onerous restrictions of the National Pain Strategy guidelines issued by the DEA, CDC, and NIH in their formal policy announcement last March-2016. You will not be constrained by the 120 mg morphine equivalent prescription dosing restrictions.
While it is event that we, as a country, have a problem with drug/opiate/heroine misuse of epidemic proportions, overly restrictive access to pain management hurts the many individuals with legitimate, chronic pain. It is a difficult environment to be a person with refractory pain. You are looked at with derision and distrust, even by pharmacy staff.
Pain is pain is pain. Neuropathic pain. Pain due to avascular necrosis. Pain post-surgery. Pain post fall or injury. Pain is like an unwanted houseguest that never leaves.
There is a on-line pain support forum offered by HealingWell.com that I frequent that might be of support and camaraderie. for you. It is small, quaint forum - only a handful of members. But the bonds of friendship and commonality are real. Feel free to find your way to the Chronic Pain forum at HealingWell.com
, read and browse through the threads, and join if you feel comfortable. I find the forum to be a source of comfort and understanding.
I hope for you some measure of relief from the pain that crowds out your life. Continue to voice a strong voice for the right for basic comfort. Chronic pain is a game changer.
Know that I care, about you.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.