huddleMy soul-mate has lived with chronic pain for over 20 years. I am biased but I think she is superwoman. She raised 3 children, took care of our home, cooked, cleaned and now she spends hours playing and enjoying her grandchildren and loves every painful minute of it. Pain will not stop her from participating in the important stuff in life.

A few years ago she discovered a non-profit organization online that advocated for people living with pain. At first she enjoyed going to daily live chats and posting on discussion boards and then the most important thing to her was the making of new friendships that will last a lifetime. A few months later she was asked to join the online community as a moderator. I will always remember how nervous she was. She felt in-adequate to do the job. After all she was “just a stay at home mom with no college or degrees behind her name”. (Her words, not mine).

She loved helping others, it came to her naturally. I firmly believe that had the lack of finances and then, of course the pain, not stolen her ability to continue her education but her opportunity to shine with a flourishing career, she would have made an awesome social worker, psychologist, nurse or teacher.

As the years went by as a volunteer, she began to get deeper in to the world of advocacy. She had met and become friends with some really great people. She still felt inadequate as they were “professionals” but she did not let it stop her from diving in and helping whenever she was asked.

She even testified before the FDA in regards to the untreated, undertreated and improperly treated pain management for people living with pain. I was able to attend one of these hearings. I had just arrived and took a seat in the back when it was her turn to speak. She only had 5 minutes to say what she needed to say to get the attention of those on the FDA panel sitting in the front of the room. She walked up with confidence, she spoke loud and clear and when she was finished telling her story about her pain and the pain of others, I saw members of that FDA panel wipe tears from the corner of their eyes. She did not know I was there until she turned around to take her seat once again. I hoped that the broad smile on my face showed her how proud of her I was that day.

From that day, our lives changed, from testifying at other FDA hearings to meeting face to face with the Governor of our state where she accepted a state proclamation making September Pain Awareness Month. Attending yearly conferences and learning how to advocate correctly and how to make sure your voice was heard was another new experience. I was able to attend two out of the many conferences she attended and I have no doubt that her friends and colleagues could tell how proud I was of her.

I have always supported her and the advocacy work she has done—yet could I do more? You bet I can! Right now in our society, it is a treacherous time to live with pain. You have groups of folks out there protesting the use of opioid pain medications for long term use. You have politicians in this country who appear to be jumping on the band wagon in the name of curbing drug abuse, however, are clearly using this issue as a means to increase they own political agenda.

We, the caregivers, may not live with pain but we do live with or care for a loved one with pain and they need us. They need us to speak up about what it is like in our lives of being a caregiver to someone who lives with pain. They need us to speak up about how heartbreaking it is for us to stand back and watch our loved ones experience such agony. They need to understand our helplessness and fear when we cannot make the pain go away.

Personally, I have watched her writhe from the unrelenting pain to the point that she was on the verge of letting go… yes, you heard me right. This beautiful, vibrant, wonderful, caring Mom of three has laid in the bed many times and cried for relief, the kind of relief that only death could give her.

The people who are giving inaccurate, false, biased, unproven information to the media outlets and those writing those horrible articles that are published, circulated and repeated by others obviously don’t care about my superwoman or you’re super person. They don’t care that there were times she just thought of death, so she could be released of the agony that grips her body, day in and day out, 24/7, 365 days a year.

We must help our loved ones to fight for the right to pain management that includes all available treatments, water therapy, exercise, and yoga and yes the use of opioid medications when their healthcare provider deems them appropriate. We must muster our strength and speak out when they have little or none to spare.

We are all they have…are we going to let them down, too (like so many others have done in the past)? No, we are not….we are going to stand tall and proud of our superheroes’?

I am a proud caregiver and advocate for my superwoman who lives with pain every day. Are you? If so, prove it. Act!

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