A New Voice For The Chronic Pain Sufferer

A New Voice For The Chronic Pain Sufferer

Author

Karen Shay

Editor’s Note: We receive a lot reader reaction to the stories and columns we publish on the National Pain Report. Occasionally, we will contact the reader and see what else we can learn from them. That’s how we met Karen Shay who shared her story about being an Occupational Therapist whose career was cut short by chronic pain. In some conversations we had with her, she decided to share her thoughts. She has started a blog at http://functionallivingwithchronicpain.blogspot.com/. We asked for and received permission her first blog. We hope you find it as interesting as we did.

After dealing with this horrendous 24/7, moderate to severe chronic pain the past five years (plus 18 years prior to this of intermittent neck pain), I have been lost, wandering around an endless “chronic pain maze” with NO WAY OUT! This leaves me gulping for air, trying to frantically find my way! It’s not just the horrendous chronic pain; it is all the stuff one has to go through living with it! There is so much confusion on what to do! Who can help? What will make it go away? Where do I go next for relief? Why is all this happening to me!?!? When will it all end?!?!

I spent 23 years working in Occupational Therapy as a treating therapist, and as a manager. I worked mainly with the elderly population with decreased function and strength in orthopedic, neurological, muscular, cognitive, pulmonary, cardiac and psychiatric diagnoses. Helping people recover and be as independent as possible, with whatever their physical or mental diagnoses left them to deal with in life often means learning to live life in a new “normal.”  This was my passion! It still is!

For the past five years, I’ve been one of those people learning to live my own life in a new “normal.” Everything I worked so hard to achieve in my career and life had been shredded to pieces by my multiple spine issues. 3 cervical herniations, 3 lumbar herniations, lumbar stenosis, DDD, occipital neuralgia, cervical foraminal stenosis, cervical nerve damage (C2-3 level no one wants to touch), brachial neuralgia, post-laminectomy syndrome, cervical radiculopathy, and SI joint arthritis. A neurology specialist at the University of Michigan, stated that the nerve damage in my neck leads to a neurological nerve disorder, called Central Pain Syndrome, thus leaving me with moderate to severe constant chronic pain.

Over the past five years, I have tried repeatedly to take the shredded pieces of my life and rebuild a new “normal”.  Finding “tools” to be functional in my daily life to just get done what needed to be done, to take care of myself and our home, with all this physical and emotional pain was very hard to achieve. Throughout all this, I was grieving! Gripping tightly to what my life once was! I have struggled in my heart to find significance, a purpose, with where I was at.

Trying to be functional in life with all this pain is hard enough. But, one cannot escape going through the added weight of the intense emotions of all the loss this pain also puts the sufferer in. The denial, isolation, anger, bargaining and depression to hopefully someday finding acceptance are just so hard to deal with! Achieving acceptance can lead to a sense of peace and joy in the new “normal.” I want others to know it’s worth the fight to finally get to this acceptance! I hate to see other chronic pain sufferers get stuck along the way in the negative aspects! Down the road there are others needing us to help them find their new “normal!” We need to lend a hand to each other in this journey! We do not have to let it overtake us!

I (with God’s help) have mostly put together the shredded pieces of my life caused by the chronic pain to be as functional as I can be in my new “normal.” I am finding my way through the maze of all the physical and emotional stress living life in chronic pain brings. I feel I am finally ready to work on acceptance. I have felt it in my heart here and there. Yet, I am still gripping tightly to what my life use to be! It’s just hard to let go! I have slowly found moments of peace and joy, less fleeting, taking over my heart. Maybe it is because God’s creation is spring forth with springtime finally arriving, but I am feeling renewed and ready to live again.

Part of my new “normal” is using my skills in Occupational Therapy to help other chronic pain sufferers on this same journey put together a “tool box” with tools to build their new “normal.”  So, I am diving into learning about blogging to share these things! Hopefully, you will be able to find something to help you to be as functional as you can be while living in chronic pain!

Authored by: Karen Shay

There are 4 comments for this article
  1. Tania at 7:10 pm

    Wow. I forgot my lesson from depression-there are always people worse off (is that appro?). I just stumbled on this site God knows I don’t know how-I’m all over the net, since I can’t do much else and I’m trying to find help, and now look for ANOTHER doctor, da da da. I thought it was me-but ya’ll are talking about what a huge part the anxiety plays-like you can’t win between chicken drs, ones dropping medicare, DEA. I’m not going to say much, because my fingers are falling off, but more later. I have half the things wrong with my back that Karen does, only lumbar and thoracic. I see no hope. I apologize to the rest of you that I do not have God, per se, with me, but that’s me. And I never heard the term “drug holiday” either! But I have been doing it for years!! Yesterday was doctor day (500 mi round trip I CANNOT afford), and, as always, it was awful. He is a Pez dispenser, not a doc. He goes by “Better or Worse?” Here. Bye. Without even looking at me. Even in the face. and he is the best I’ve found in YEARS-I only say that because he put me on dilaudid, which nobody else had, and it works best so far. But I missed an appt (makes me come every month-he told me it was the law-is it?-I think he is just greedy.).I research and write well, just not now.B.S in Biology, Minor in Chem., and a couple others, but never got to do my dream job (same one since I was 5, and I’m 54). I have been going through this 13 years. I need some help, some answers, then I KNOW I can help. I’ve already been tossing blogs around in my head, and now here I am. I AM SO HAPPY I FOUND YOU!!

  2. Karen Shay at 8:30 am

    Renee and Robin Birdfeather,

    I must apologize profusely for not replying to your comments until now! I am new to this blogging and writing stuff and did not know I had to click on a link to get notifications to responses to my article! Please forgive me!

    Thank you for taking the time to read the article I wrote! And I thank you to National Pain Report for posting this, as well as all the informative articles you post daily!

    The best thing about National Pain Report is keeping us in the loop of what is going on! A place to go to have up to date information is a necessity in this life of pain. Helping us to be informed on others struggles as well is a major necessity to help us know we are not alone! Being in chronic pain can be a very lonely life! We all need each other!

    Thank you Robin and Renee for sharing your stories as well! It is just so hard to live this life and to deal with all the politics of it all adds to the pain on a new level! May you find support of others, a purpose and peace in your journey!

    As I am able to continue writing my blog I am hoping that I can help at least one person struggling with some “tools” that can make it more doable! That would make my life in pain, my “new normal,” more tolerable! We all need to help each other on this journey!
    Blessings!

  3. Renee at 4:53 pm

    I have been struggling with chronic pain for most of my life. I was born with a congenital spinal deformity which was misdiagnosed for years, as,
    “growing pains”. After the birth of my first child, I lost reflexes and strength in my lower extremities, necessitating emergent spinal surgery. That was in 1973. Over the years, my spine has continued to deteriorate, requiring a total of 7 reconstructive procedures. I ended up with a MRSA sepsis and osteomyelitis of my spine due to poor central line care. Multiple fusions required the harvest of both 10th ribs for bone grafting. One instrumentation procedure, using Harrington Rods, caused a vertebral fracture from over distraction of the hardware. Needless to say, my back is a mess. I have constant back pain, as well as,” phantom” nerve pain from the amputated ribs. This pain is like a white hot, unrelenting fire! The nerve damage to my back caused my bladder not to empty completely, leading to recurrent kidney infections. I was getting fairly good pain relief with MS Contin, every 12 hours and plain Darvon 65, for breakthrough pain. In 2008, I was run down by a car that crashed into a local Walmart, causing me more problems. In 2010, the FDA, in it’s infinite wisdom, pulled Darvon, claiming it was dangerous because people died because their hearts stopped. Darvon was a very old, inexpensive drug, that had been in use as a schedule IV pain reliever, since 1957. I am unable to tolerate most pain meds, so had to increase my MS Contin, because there was nothing I could take for breakthrough pain. I travel for my work and have difficulty every time am in a new town or state. I am very familiar with the verbiage used, by physicians, who don’t have the guts to treat me because they see me as a drug seeking junkie! It can make your quality of life so bad that it doesn’t seem worth living. In actuality, it’s a, “no brainer”. I know what works, so that I can work and live a life of quality and dignity. It’s time for those of us who are suffering at the hands of the FDA, to be heard. Withholding appropriate pain control from those who are suffering and in need, will do nothing to keep those who want to use drugs, recreationally. Those of us who need these medications are aware that, “drug holidays”, are necessary to help prevent building a tolerance, and yet I never hear the term used in any of the prescribing information, published by,”Big Pharma”. It’s almost as if they want people to need more and more! The war on drugs will only be won by legalizing them! We have a wonderful plant, Cannabis, with many positive medicinal uses, however it cannot be patented, so no profit for the drug companies. BTW no one has ever died of an overdose of cannabis! Even though it is legal, in some states, the FDA still considers it, “dangerous”, illegal, and criminal to possess or use. It’s time for the FDA and DEA to get out of healthcare.The FDA can’t police drug companies that falsify research results on medications. Most prescription medications come with warnings , that include,”possible death”! Just imagine the money that could be made available, for research into the problem of chronic pain, if the war on drugs was stopped. There is almost no drug related crime in countries where drugs are legal, and those who are addicted get safe medication.

  4. ROBIN BIRDFEATHER at 2:43 pm

    Your pain history is complex, as so many of ours are; I deeply empathize with your story, partly because some of it is mine – including my own loss of my decades long practice in Trigger Point Myotherapy. It became impossible for me to be treating others with such care when I was not getting the care I needed. I was “too successful”, never having enough time to apply all the healing modalities I know, to myself. several of my conditions are spinal, but the worst ones have been in my large joints.
    after my second tick bite producing not only Lyme disease, but three Co infections as well, my Lyme literate doctor (LLD) and I have determined that the pain in my joints that was wearing them down has been due to Lyme
    Arthritis