Intractable Pain: Our Story—Why We Became Advocates

7 Mar

by Heather Grace, IPJ Staff Writer

Why We Fight: My Story

Imagine having a health condition that had progressed over the course of several years. First, it was a minor annoyance. You were prevented from doing fun activities after work, and certain seemingly vital chores got ignored little by little. Within six months, you became seriously concerned. Even after seeing doing all the doctor said, you weren’t better. And now, you were afraid to do more vigorous activities, like your favorite stress reliever, rollerblading miles each week. You’d already taken one serious spill because your condition was more severe than you wanted to acknowledge. Something was really wrong, and you felt it in your arms and legs. The more you worked, the worse it got. The boss was now angry that you weren’t putting in overtime anymore. The pressure was mounting, but you couldn’t pretend anymore.

You were forced to go into “the system.” Workers Comp was an added stress no one could possibly enjoy, but you did as you were told, and tried to make the best of the waiting game. Months turned into years, but your very necessary surgery was still in a holding pattern. The condition was now serious—clearly, you could not continue at your usual pace at work. You often spent your breaks in crying spells in the bathroom.

You felt hopeless. There were no answers. It felt excruciating, never-ending. More than that, it was as if entire systems of your body were failing. You couldn’t get comfortable to sleep. When you did, sometimes you only slept an hour at a time. Sometimes you just drifted in and out of consciousness, awakened so often by the feeling of a piercing hot poker slicing down your spine. Other times, you felt your heart would beat out of your chest. Whatever this was, you didn’t understand it, or have a word for it. It was pure misery. Worst of all, there was no diagnosis.

You dragged yourself to one appointment after the next, always with the same result. They all seemed to shake their heads. They didn’t know what was wrong. Sometimes, they were mean and accusatory. It often felt like they weren’t sure if anything actually was wrong… Still, you were in a spiral, unable to reclaim the person you were even a year ago. The person you were five years ago was completely unrecognizable.

You knew the job was killing you, but it almost didn’t matter. No matter what you did, it kept getting worse. Spending 16 hours trying to recover from the 8 you were at work was now not enough. From total ‘Type A’ overachiever to… THIS? Your primary doctor cautioned you, said you should go on leave. You knew it would be the end of your career, so you refused.

Soon after, the employer would force you out. By that point, all you could muster was a vexed look of betrayal and confusion. Yes, you were very concerned with how you’d keep a roof over your head, but in a lot of ways, you were relieved. This illness was all-consuming. You knew it was bad, really bad.

If they’d just listen, the doctors would get an idea of what this was and how to fix it. But, they seemed to have their minds made up before they even saw you. They just didn’t want to see that pain had taken you over and you were disappearing a little more each day. You were a young woman that used to have such promise… a good job, money in the bank, a bright future. But now everything hurt. It used to come and go. How you wished you could go back to that time… you had thought the pain was horrible then, but now you wished for that kind of pain. Just off and on, yes, that was manageable. But this? This was nearly unlivable. Unspeakable. Torturous. But none of the medical professionals wanted to hear it. As soon as you said that simple, four-letter word, they shut off: P   A   I   N.

Pain?!

No, it wasn’t that, they thought. They were neurologists, orthopedic surgeons, physical therapists, pain management doctors, even. Yet, they wouldn’t hear you. It couldn’t be pain, no, it wasn’t. You were too young. Instead, maybe you were just another one of those liars. An attention-seeker. Or worse, an addict. The appointments seemed to get shorter and shorter, and the wait to see the doctors, longer and longer. Unbearable, unspeakable, suffering. Misery. Yes, from time to time, you doubted yourself, because you didn’t really want to believe it, either. They were all so cruel, and at the same time, so certain you were wrong. But the searing pain shooting through you always reminded you of the reality of the situation… the pain–all of it–was indeed real. It was also very hard to take.

And once the doctors started doubting you, others followed. First, your employer… coworkers were whispering. You were less than impeccably dressed as time wore on, not at all yourself. You marveled that you’d made it to work at all, but still they scoffed. It was clear the boss wanted you gone. The people you counted on—your closest friends and even family—were not far behind. Doubt was a secondary sickness that seemed to infect the people around you, no matter how hard you tried to keep it together. You were extremely ill, and you were the only one who really seemed to know it. It took so much energy to leave the house now, to be around anyone who you had to be “okay” for. But you knew the truth of it all: the pain was wearing you down to nothing. You were losing this battle, and no one seemed to even offer a single answer as to what was causing it, or what could make it go away.

To Search for Normal, Or Say Goodbye

You wanted to go back to normal. Where was normal? Desperation set in. You couldn’t force yourself to clean the house. No more cooking, not for yourself and certainly not for guests. You ate less and less; barely mustering the buttons on the microwave, but nothing more. You cried all the time now. More and more of that strength you’d always had, that will to fight left your body. Not because you didn’t believe you deserved help, but because your body could only take so many years of fighting

At a certain point, you decided it was time to give up. It was too much, you were too weary, and in far too much agony to keep going. If the pain had no end, if there was no “normal” to be had and the allies had all but disappeared, it was okay to say goodbye now… Despite the person you once were, you were at peace with your decision to end your life. It had been seven long years. More than most would fight… All you really wanted was a fool-proof way to end it all. No doctor would treat you, they barely looked at you. Now, you didn’t have the strength to disagree. It was just too hard to go on fighting.

Even as you’d decided to die, something deep down inside you wanted so badly to see light at the end of the tunnel, that you told yourself, “Ok, I will see just one more doctor… But if he can’t help me, that’s it. No more.”

Maybe that doctor was in West Covina, and he had saved many people, just like you. And when you spoke to him, he asked you questions, he wanted to know what was wrong. You wept, merely because he listened, and didn’t judge you. And even though words like Morphine scared you a little, it was better to keep trying. 

And this doctor did something that made you more assured than you had been before. Instead of patronizing you by patting your hand and saying everything would be just fine, he told you the cold hard truth: That “normal” was out the window, and it was time to begin again. It was time to see where this treatment could take you, but you had to stop making yourself crazy with the idea of who you once were. It would hurt to let that “ideal you” go, but you could do it if something better than THIS awaited you…

You put your faith in this treatment, because you knew deep down, life could still be worth living. So you did exactly as the doctor said, followed all the rules, and you even started to a little feel better month after month. And month after month, you let go of the back-up plan of suicide. You decided that as hard as this road was, and would still be, you would take solace in this third option. No, it wasn’t just a choice between going back to normal or committing suicide. There was a third option, after all. You chose to rebuild.

Rebuilding: The New You

Best of all, you weren’t alone anymore. Someone wanted to help you find the pieces of the puzzle that would make you whole again. He put his heart and soul into not just his patients, but research to help everyone with constant, severe pain. Intractable, it was called. And, he had an army of dedicated patients who were so enthusiastic, it was infectious. You could actually envision a life full of meaning, even if you never worked again a day in your life. What a refreshing thought that was! So many tears over the loss of career, who you thought you were. But the inspiring people you met–what a joy it was to be around them when you’d spent so long in such a dark and scary place!

You had seen the power of giving in a person who was seriously ill… seriously ill, just like you! But she was a powerhouse of love and support to all the people with intractable pain who needed her. It made you want to work on yourself, to get to that point… to be of help to others, like she was. Because for the first time, you could envision doing something that made a real difference, even in a small way, when and how you were able. Why? Because helping people didn’t have to be a full-time job… you just had to give of yourself how and when you could. It was both inspiring and exciting!

Soon, you’d gotten back enough of your old self to remember who you used to be. And you knew that you would soon take up this cause, too. Heck, you had no choice. The fact that you stepped back from the ledge was a true miracle. You wanted more than anything for others who were nearing the ledge to get their miracles, too. The more people you could save from going over the edge, the better. You wanted to help them see there were options, even for people with severe constant pain. You didn’t want them to actually end it, like you almost had.

You could be useful, help save lives. You could be the support system for someone else when they thought there was nothing and no one left. Maybe they would find more reasons to step back from the ledge than you first had… Because, in all honesty, you still aren’t sure why that voice inside you said, “Stop, wait, not now, not yet,” when you got to that point. You truly had no one there to stop you, but yourself.

Yes, you would help people who were nearing the ledge, and even those who stood upon it. You would save as many people as you could. Dealing with intractable pain was a war within the body, and often it took someone who had been there to help you find a way out. And, maybe through telling your story, you could even prevent people from getting to the edge in the first place! Maybe by letting people know that chronic pain could lead to intractable pain was a strong enough message to help people get early treatment, and save them from living the rest of their lives in pain.

An Advocate’s Heart

The more you fought for people with pain, the more you realized what a serious struggle this would be. There was no easy road, especially when it came to intractable pain. People with IP had to work harder, doing more to keep their health where it needed to be. They had to find a pharmacist they could count on… someone who wouldn’t judge them, or insist that high dose opioids would kill them. Or worse, report them to the DEA for suspected abuse, merely because they didn’t understand intractable pain. They had to educate themselves on all of the other things that would help them live better lives. It was vital to get in the game, 100% and never stop learning about this illness.

You lived with hope, and a lot of it. But, you also lived with the fear that any little problem could bring an end to the life you’d fought so hard to win back. You supported others, and tried to build them up, too. And when you found someone who understood, you treasured them—they were family. A piece of your heart was healed because of the support they gave you. And you hoped you did the same for them. People who understood helped each other to carry on when the pain was bad. They checked in on you, like no one else knew to do. They were there to help when something went wrong that you had no control over. Together you were stronger, more prepared to fight for each other, and for this important cause.

You never envisioned having to do so much to keep yourself alive, but you did it gladly. You tried to be good to yourself, preventing any stress that could cause you undo suffering. You picked your battles more carefully, knowing that so many small things didn’t matter at all anymore. You appreciated life in a new way—and you found happiness wherever you could. Simple things were beautiful, amazing, inspiring. They were to be treasured. Most importantly of all, you told as many people as possible about your experience, hoping that one day, the world would understand.

And if, by some horrible chance you were caught up in ‘the war on drugs’ because of your treatment, you would be honest, and explain your plight the best you could, and hope for the best possible outcome. You would do what you had to do, in order to survive, knowing that the law supported you, even if most people didn’t understand. Yes, your intractable pain meant a regimen of prescription medication, along with many nonprescription treatments including protein, vitamins and supplements. You knew you were doing the right thing, and that mattered. Not just for yourself, but for everyone else with intractable pain that needed support, that needed to rebuild.

You would show them the reality of a life of pain ‘til your dying breath. You would share, help, guide, educate. You would bring cheer. You would listen. You had an advocate’s heart, and vowed to never stop trying to change people’s minds.


Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a California Leader for the American Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html  http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

2 Responses to “Intractable Pain: Our Story—Why We Became Advocates”

  1. louise nelson March 9, 2012 at 1:24 pm #

    I also live with constant pain .first I hade spinal injury & 4 back fusion s.then fibromialgia, then to top this all off & get my bones involved ,my Dr. Recommended a reclast infusion & that was the beginning of The end.. I could deal with the other pain & pain meds helped as well as movement ,heat etc. But this bone pain witchbome appeared the day I received the reclast has been unbearable . It’s like my bones are about to explode every second of every day for over a year & no meds.really stop the pain ,only a tiney bit of relief at times . My life has changed so dramatically . The co. Witch makes this poison will do nothing to help me or give any advice for relief nor info on ending the pain .my jaw is shrinking from it & tiney peace of bone come through my gums. This pain must stop,I just cannot stand it …

    Like

    • thepainjournal April 18, 2012 at 1:50 am #

      Louise, so sorry I haven’t replied sooner. I’m dealing with a backwards slide that’s kept me very ill as well. Please do not give up trying. I have a friend who had a similar response to a drug that’s different than the one you mention, but it does happen.
      Please look into other options and don’t give up. There is hope and help. Even if you can just get B-12 shots weekly, try protein supplements or take amino acids like Gaba or Taurine, things like these can do wonders. Lots of little things help the overall picture get better, you’d be surprised. Want more info like this from a pro?
      Look at these wonderful resources, written by an expert in pain, Dr. Forest Tennant: http://is.gd/painHB1 & http://is.gd/painHB2. Take this info to your doctors as well! Note: His web site has resources for physicians: http://foresttennant.com. Also, he works for a ground-breaking magazine, Practical Pain Management: http://ppmjournal.com.
      Hang in there–I’m rooting for you. I know it’s hard but you can do it, just takes the right treatment combo for YOU. If you want to connect w/me, the best way these days is on Twitter @IntractablePain. :)

      Like

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