A Life Forever Changed: Chronic Pain Victim to My New Life

17 Jul

by Heather Grace, IPJ Staff Writer

I am a busy bubbly health writer living in the New York area, flitting from one adventure to the next. While I am hardworking and dedicated to my craft, I insist on truly living–finding time to enjoy the life I have built. Everyday when I lay my head on my pillow, I am in awe of the life I made with my own two hands…

Or, that was the life I *wanted* for myself.

And I was well on my way… I was patient, and my dreams were slowly coming into focus. But before I even had a chance to be that persom, my life was stolen from me bit by bit.

At first, it was hard to notice–only small pieces were missing that didn’t matter that much. Before I could stop the destruction, my identity was permanently marred, as was my well-being.

That is life with constant severe pain.

My life was taken from me by a spinal injury that, when it wasn’t medically resolved quickly enough, would cause serious nerve damage. And, before I knew it, I had an irreversible neurological disorder that would cause me pain every minute of every day. The day I learned there was no return to “normal” in my future, I was shocked, scared, angry… Why don’t people know this was possible? Why didn’t Worker’s Comp give me the spinal surgery before it was too late? There were so many questions that were natural but had no answer. It was too late–I was already broken.

So much was taken that if I dwell on it for too long, I could turn into a huddled mass on the floor. It would’ve been easy for me to become bitter, and shake my fist at the world out of anger and resentment. Instead, I grabbed on to positivity with both hands. (There were many wonderful people who helped me find the strength to do so!) I made the decision to fight. Not just for myself and my future, but also for others. Now, I fill my life with what matters most to me–as often as I can:

I HELP. I CARE. I REACH OUT… I am on a mission to educate people about the reality of pain. Everyone should know that pain can come like a thief in the night–stealing what is most precious from you. That it can be constant, severe and permanent. I focus both on preventing people from permanent injury, but I also want family members to understand that chronic and intractable pain are real, serious and scary.

If you’re already in my shoes? I HELP. I CARE. I REACH OUT. Trying to help others like me survive the worst rollercoaster ride they can imagine… One with new twists and turns each day and no end in sight.

Advocacy is who I am now. And I am proud of how far I have come. Even more than that, I am *thankful* that I was given a new life that I enjoy this much! 🙂

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.

6 Responses to “A Life Forever Changed: Chronic Pain Victim to My New Life”

  1. Jason July 18, 2012 at 1:20 am #

    Heather, I could have written this article almost word for word. Unfortunately for me I have not quite reached the levels of your last three paragraphs. While I am in pain management, I have not found a doctor who will work with me enough to even get my pain to tolerable levels.

    I have had brain surgery, an artificial disc at C5-6, and fusions at C7-T1, T3-4, and T6-7. I don’t think any of these surgeries addressed the cause of my pain much less alleviated it. I cannot find a doctor to continue to look for a diagnosis yet at the same time, will not prescribe the medications to control my pain.

    I am in the process of trying to get into a new pain management clinic as well as trying to get my current pain management physician to prescribe a higher dosage of medication. I cannot even get my current doctor to listen to all of my symptoms (all he wants to know is where it hurts the most, which I cannot answer) much less increase my medication.


  2. Moments With Marcy July 18, 2012 at 12:22 pm #

    I like your positive attitude 🙂 I have Fibro/Myofascial Pain Syndrome, so I know that roller coaster well! I also call myself a chronic-pain fighter on my blog, instead of victim/sufferer. It is so hard, though, as only those with chronic pain understand! So kudos to you for trying to stay positive!


  3. Kim Bates August 21, 2012 at 7:18 pm #

    Thank you for writing this post. I was diagnosed with Intractable Pain/Central Pain disorder over a year ago. I found an amazing doctor in West Covina, CA that worked with me relentlessly trying to get me just one “pain free hour”. He had achieved this with other patients but unfortunately not with me. I tried every single pain pill combination you can imagine and after taking Opiates for 11 months entered rehab. The one thing I learned was that there will be no hour pain free for me. Who takes Opiates daily and gets no pain relief…me! Thank you for your posts on Facebook as well. Even though I do not want to get up and force myself to live life in intractable pain I do, and your posts do help.
    Keep on keepin on and soft {{hugs))


    • thepainjournal August 23, 2012 at 1:18 pm #

      Hang in there, Kim. I, too, have no pain-free hours. Intractable Pain is like that so often. My best friend is the same way. We with IP have a tough life. Speaking up is such a valuable way to ensure people understand the truth of IP. Most don’t even know we exist! It’s important to further the public understanding of the disease of pain, but also, I think of myself as a cautionary tale. I wish I wasn’t a cautionary tale, but now that I am–I want to prevent more IP patients. If I had known that IP happens when a serious injury is not treated promptly, I would’ve done whatever it took to get my spine surgery ASAP! I was completely unaware at that time, like most of the world still is. And so, I patiently waited on Worker’s Comp to take care of me. Because they didn’t do my surgery for a whopping 7 years, the nerve damage was permanent. Now, I’m stuck with IP for life! None of us wants to live with constant, severe pain. But, you have an important voice. PLEASE SHARE IT! If you want to write a guest blog here, get in touch anytime. Thanks for your comment and I am glad you have the EXCELLENT doctor you speak of. I know him well! Best wishes for the best possible wellness! Hugs, Heather 🙂


  4. Mike Meyers March 30, 2015 at 7:52 pm #

    I have been in pain for 18 years. I am now 40 years old and on the verge of losing my wife and 10 years old son. Growing up, I never would have thought I would be in this situation but here I am. I constantly pray to God and ask why I was singled out to go through this and know he his listening.
    I lived with constant pain for 6 years before they found the reason. I went to multiple neurologist and they could not see that 3 of my cervical disc were crushed. I finally went to a surgeon who operated. He put a titanium plate in my spine and fused the 3 disc. The problem is that the area has fused into a still mass that presses on multiple nerves in my neck. I have had a Medtronic stimulator put in (which relieves 5% of the pain). I wear phentanyl patches and take high doses of hydrocodone – Still No Relief – The Pain Managment Doctors have given up and I don’t know where else to turn.


    • thepainjournal April 11, 2015 at 1:04 am #

      I am so sorry. Pain is a serious struggle to cope with and I know how difficult neck pain in particular can be–the headaches on top of everything else (I’d imagine, if you’re like me). I can also understand where you’re at right now, as I am dealing with health AND personal issues too. Doing this alone is hell. Packing up to leave the home I can no longer afford w/o the help of anyone really… stress does not help one bit! I’m practically at my wits’ end, with all I’m coping with.

      However, I have better pain care. So, at least there’s less pain-wise than vs. my worst days before. I’m not sure where you live but I know a few great docs out in CA. If you’d like to contact me via Twitter, I’m at @IntractablePain. Or, leave me more info, so maybe I can direct you to some better care. I won’t post any contact info–I promise, it’ll just be for me to help! You deserve better than this!! Please hang in there. I know how hard it is, but it can and will get better–and with decent help, you’ll find family life easier, too.

      I remember life with constant pain all too well. Out of control emotions that don’t make life easy with yourself, much less others! With some decent relief, you CAN be less angry… less ready to snap at anyone/for any reason/at any moment, like I was on a few of my worst days… That is, when I wasn’t crying or considering ending my life.

      YOU, THOUGH, HAVE ANOTHER OPTION. TRUST ME, YOU DO. Back then, I didn’t have the contacts I do now–wonderful people, great caring docs. YOU CAN HANG ON TIL YOU CAN GET TO A GOOD DOC! I still don’t know how I did it, but life is so much better now! And, I will help you find the same miracle I did. We *can* find YOUR great doc, too.


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