By Suzanne Burnett Stewart
I am guessing that we pain sufferers all feel the way that I feel today, at one time or another. Today it feels as though things are piling up.
Not to me, I say. After all, I’m a Health Advocate, Awareness Warrior, Pain Warrior, Ambassador, Mentor, fundraiser, event planner, writer, fact finder and guest blogger. Of course, I’m also a chronic pain patient, but feel that I should have big shoulders, whether they hurt or not. That’s been my place in this not so new life, since 2002. The pain is not my choice, but how I choose to deal with it is up to me. I choose and have chosen to help myself and others. By advocating, fighting, writing, posting, protesting, tweeting, & attending conferences for all of us. Like Ghandi said “Be the Change you want to see in the world.” I say change starts with me!
I try to listen. I don’t mean just “hear what is being said” but hear what’s not being said and try to make something good happen in all our lives. I like to make change that is good, even if it is only to put a smile on someone’s face for one day. I truly enjoy caring about other people and making them feel good or better about themselves or their situations. I remember one time, in one of my own support groups that I still moderate today; I got to do something extraordinary. One woman had a wheelchair that was too big for her. I found a man who had one that was too small for him. I got the two of them together and they swapped wheelchairs. The joy on their faces and the feeling of warmth that I got from that experience, was the best medicine that I could’ve ever had to help “me feel better.”
And yet it is suffering that is happening right now, today in many doctors’ offices, pharmacies, emergency rooms and patient homes. But I won’t allow us to suffer in silence. It’s happening and has happened to me. I’m not watching the “Opioid War” play out on a television show – I’m living it. My husband dropped off my legitimate prescription for opioid pain medication 6 days ago. He took it in 2 days early, as per our routine, to be filled on the 3rd day. This happens monthly, not only to me, but to many other chronic pain patients. After suffering for 3 days without my pain meds and being at the mercy of the Pharmacy/Pharmacist, I finally obtained my medication. It’s not safe to abruptly stop taking these meds for several days. I’m in a small subset of pain patients who are candidates for opioids for medical reasons because they do help to lessen the pain.
This is not an “Opioid War.” It’s a “war” being fought by chronic pain patients and some supportive physicians and organizations that stand tall with us. It is all of us against the mainstream media, PROP, addiction specialists (who only see dollar signs in our pain), the CDC, the DEA and some unfortunate people who’ve lost someone to an overdose, I’m afraid.
The reward for my advocacy work is inside my own heart and soul and gives me an inner happiness or peace that nothing material can top. It feels good in my heart and soul when I’ve helped another pain patient feel revived or even just a little bit better, less afraid, less alone.
But today, I am feeling sad. This is the harder part of my journey; along with the loneliness, stigma and then of course my own pain which echoes within me and vibrates like an earthquake. I know other pain patients feel that it seems insurmountable at times. I am a chronic pain patient just trying to survive one day at a time, like everybody else.
So, let’s remember this! These opioid pain medications are available, have low side effects and they are not expensive. People who need them and who get relief from daily chronic pain, should be able to have no problem getting these medications. A true chronic pain patient is not “addicted” but “dependent” on the opioids. We do not get a “high” and we do not “crave them.” We take our medications responsibly.
These opioids help many of us who’d suffer in pain daily without them. My favorite advocate, Helen Keller, once said “I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.” I will continue fighting for our cause as long as I can breathe.
We must fight because we cannot afford to lose.
Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children. Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth”(suzydukettes.wordpress.com).