To understand what chronic pain is like, I have decided to provide some very private details about my experience. Dealing with pain, serious pain that never goes away, not even for a single day, is HARD. I've been through hell. I've literally came back from the edge...
My pain began in a somewhat innocuous way. By spending countless hours from 1995-1999 in a non-eronomic computer job, I was injured at work. It seemed like something that should easily heal, with some physical therapy and meds. Sadly, it only got worse. I was told I needed multiple surgeries. I was experiencing severe pain in my neck, with pain/numbness spreading from there all the way down to my arms. I often dropped things, couldn't sit at my computer and do my job without experiencing severe pain, and my body locking up. I needed help, but the insurance company dragged their feet.
They took more than two years to do the surgery I needed on my neck. In my meantime, allowing damage to continue from my neck to my midback, through my snoulders, down both arms. I was a mess, both physically and mentally. I begged. I pleaded. Why wouldn't they help me, when clearly, an MRI showed how serious my condition was. It wasn't something that could be faked, and they knew it. I NEEDED THEIR HELP! Not only did they NOT approve my surgery, they just sat on my file, not even ANSWERING the many, many requests. Delays by the insurance company kept me in a constant state of pain.
What Pain Is...
Pain is agony, misery, suffering, torment... starting out dull, then building -- shooting, stabbing, throbbing, aching, burning, cramping, stinging, tingling, cutting, heaviness, pressure, tender, intense, numbness, discomfort, distress, a twinge that tortures, turns your world upside down. Twisted emotions, anguish, anxiety, depression, anger, bitterness, grief for the life I once led, the 'normal' that is now just a distant memory. Where did 'I' go? Who is this new me that I don't wish to be? Why won't anyone help me? Why does the red tape bind me up, only increasing the insanity of it all? Insurance, why won't they pay? Doctors can't make it go away. Why do I feel like screaming all day? Collapsing, a sobbing mess on the floor, I am not sure I can take it anymore...
Finally, Surgery -- Now What?
By the time the surgery was eventually granted in 2004, my disc was completely smushed, being squashed by my spinal cord. My pain did NOT go away - it was with me every day. I felt like I was half-insane when I saw my MRI. It was alarming! No wonder I was in so much pain and constantly dropped things. Yes, the surgery was finally granted, and you'd think I would be jumping for joy. Instead, the pain was so intense all I could do was cross my fingers and hope for a miracle.
Of course, even though I had the surgery, it was too little, too late. My nerves were damaged, my pain was severe. It's hard to say exactly why, but possibly due to build up of scar tissue, additional damage to discs above the disc in my neck that was replaced, as well as the constant pain signals that my body has dealt with since 1999, my pain now will not ever completely go away.
Dealing with all of that, awaiting surgery, was bad enough. Coming out of it, not feeling even a little bit better, was devastating. My orthopedic surgeon was frustrated with me, as I asked him why I wasn't better. He screamed in my face, "You should be better now!" It felt like an accusation. Why would I WANT to feel like this? Further MRIs showed damage continuing in my neck and shoulder.
The insurance refused to deal with my pain appropriately. I was sent to a substandard pseudo-pain doctor who said giving me too many meds would look bad, prescribing something strong could get him in trouble... the DEA didn't like that. It was so frustrating. Didn't he understand? I was in pain--all I wanted was relief!
The End of My Rope
I was so desperate; at the end of my rope. I felt all alone. What I wanted seemed so simple, why did it seem like it was impossible to get? Pain relief. I wasn't myself at all. I didn't recognize the emotional mess I had become. I couldn't laugh anymore. I snapped at people. I didn't like anything about my life anymore. There was little left to hang onto.
I contemplated suicide. More often than I want to think about. Even while I was considering it, I was afraid any attempt would only result in more pain, and wouldn't end my suffering.
And, I attempted suicide. Twice. Near hysterical, with tear-filled eyes, I got into my sporty little car, and flew down the freeway. going nearly 100 miles per hour. Desperate, trying to find a good spot to crash, I considered my options... flying off an overpass, slamming into the enbankment in the middle of the freeway, or perhaps hitting one of those huge walls along the side of the freeway.
No matter what I considered, I couldn't be certain of the outcome. All I wanted was to stop MY pain, I didn't want to hurt anyone else. I couldn't do it.
Each time was intense, and only made my pain worse. Screaming, slamming my fists into the steering wheel, I was frustrated and even more defeated than before. I couldn't guarantee my death, nor could I guarantee the safety of others in the process. Trying to find a way to 'end it all' was as difficult as dealing with the pain.
NOTE: NOT LONG AFTER MY ATTEMPTS, I LOST SOMEONE I LOVED TO SUICIDE. I SAW WHAT IT DOES TO THE PEOPLE WHO LOVE YOU -- THE DEVASTATION IT CAUSES. IT STILL HURTS THAT WE LOST HIM, EVEN NOW... DON'T DO IT! PLEASE, IF YOU ARE THINKING ABOUT IT, GET HELP. CALL 911 IF YOU HAVE TO!
Coping... with a Disappearing Support System
It's hard to believe I was ever that person, but I was. I had panic attacks. I would scream, I would cry, I made everyone in my life want to run for the hills. People tried to be supportive, but they really just couldn't understand what I was going through. I am sure some of them thought I was crazy. Others might've thought I was overreacting. Maybe some thought I was a drug addict.
Only one person really stuck by me no matter what. He was really there for me, even if I cried into the phone, calling him at work. He would say, "I am just so sorry. I wish I knew what to say." Just the fact that he didn't vanish into thin air was enough. It was a blessing that anyone was willing to accept me as I was--emotional rollercoaster and all.
I'm not sure why people disappear like that when times get tough. Maybe it's just too much, too intense. Feeling helpless around someone you love is hard, to be sure.
For people out there with a friend or family member in pain, I wish just once they could understand what this life is like. Do you know what it's like to be in pain for an hour? What if it didn't go away? Can you imagine the fear involved? And, to top it off, imagine everyone you know looking at you like you're a freak. Or, more than a freak... like you're a psycho drug addict fiend, a big liar, someone who is really just looking to score. Beyond the pain, feeling all alone when you're dealing with the biggest crisis of your life... how does somebody do that? I tried to muddle through, despite being alone through a lot of it.
I never knew pain could be such a destructive force. It's madness! It's a nightmare. It feels completely out of control. Everything in my life that was good was taken from me. My high-paying corporate job, nearly all of my friends, my family, my boyfriend, my home, everything was gone.
My Accidental Answer
Despite the overwhelming situation, I decided I couldn't give up. Through the madness, I had to try to find a way out--a REAL answer. I never gave up searching. By some miraculous coincidence, I finally met someone who understood. He happened to work at the hack psych office that my insurance sent me to. I was depressed because of my constant pain, and the lack of answers. Instead of finding a way to cope with this mess, the 'therapy' ended up being just another headache. During each visit, it was as if we had to start all over. My psychologist asked for basic details, again. Who was I, what was my problem, why was I depressed... nevermind my file, I was a new patient each time and it was beyond frustrating. I spent 50 minutes twice a month talking about my problems to someone who took lots of notes, probably reports required in order to get paid, but she never did anything to help me! It felt like 'drive-thru' mental health care. After a few visits like this, I decided to tell them I was unhappy. I asked to see the psychiatrist--the one who was supposed to be directing my care.
When I went in to see the psychiatrist, instead I got stuck someone else instead, a Physician's Assistant. At first, I was livid. I knew he couldn't do anything about my substandard care and the fact that the psychologist was not helping me. But, then something unexpected happened. He saw my tears, he heard a little bit of my story and the pain that had caused my depression. He began telling me of his wife's pain problems and all of their struggles. Her story was a lot like mine. He took out a small piece of notebook paper and wrote down a name on it. The name of his wife's pain doctor. I had no idea that scrap of paper would change my life forever, but it did!
A Doctor...and A Diagnosis
I called right away and asked if I could make an appointment. After hearing a little of my history, they said I could see the doctor, but would need to bring a family member--someone who understood my situation. When I arrived at the appointment, with my grandparents by my side, I knew I was in the right place.
The doctor asked serious questions. He listened. He looked for problems, tried to find symptoms, instead of trying to find reasons to dismiss me, like so many others had. He pointed out some things I had never heard about before...like the visible swelling in the areas where I reported the most pain. He also took my blood pressure and pulse, commenting that an elevated pulse was an indictor of active pain. My pulse was 97. All of these were signs that I was truly suffering. Then he asked me a question that blew my mind. Was I having problems with tooth loss? I sat up straight in my chair, wondering what all of this meant. "How did you know?" I asked. It was truly shocking to me.
Besides all of the novel questions he asked, there was something so much more reassuring about this doctor. He treated me like a human being. He said we were going to figure this all out, and not to worry. It was so simple. The way he treated me is something that every patient deserves, but it was something I hadn't experienced at any other doctor's office thus far. It was hard to contain my tears - I was hopeful for the first time in a loooong time.
After a thorough history, some tests and an extensive conversation between the doctor, my grandparents and me, I was officially diagnosed with Intractable Pain. I had no idea what that meant. I soon learned that intractable = unending chronic pain.
After my diagnosis, I was even more perplexed by the fact that so little information was available on the subject. Nobody I knew had ever heard of Intractable Pain. Even so-called reputable pain doctors in the area, some of which serve as 'Medical Examiners' to determine someone's diagnosis on behalf of insurance companies, don't treat IP. What?
Why doesn't anyone other than my doctor seem to take pain management seriously... talk about it, write about it, do SOMETHING about it? So why haven't I ever heard of Intractable Pain before now? Why didn't any others in the medical community see pain as its own diagnosis -- something that needed to be treated, coped with, monitored? It was becoming increasingly obvious that in order to ensure appropriate care, I would have to work with my pain doctor and be a strong advocate for myself with everyone else I dealt with. I would have to take on the insurance company, and force them to see how very real my diagnosis is.
Pain Management Requires Tenacity
Dealing with pain and finding a way to effective pain management IS NOT EASY. However, if you are tenacious, if you fight for your rights no matter what stands in your way, you will get there! I learned a long time ago that if you don't stand up for yourself, you will get run over. You must fight 'the system,' which appears to fail most pain patients. My advice? (1) Never give up. (2) Be your own advocate.
Sadly, finding effective pain management has meant going outside 'the system' and paying for treatment myself. (Talk about painful!) It hasn't been easy and I would strongly recommend fighting for yourself, insisting the insurance cover your treatment. But sometimes you have no choice. If they ignore your requests, it's important that you take care of yourself, anyway. Save all your receipts in the hope that one day, they will pay for your care. Even though I spend hundreds each month on my pain management, out of my own pocket, it is worth every penny. It shouldn't be this way, but I have accepted it, and am fortunate that I have the means to afford it (just barely!).
It took me nearly 10 years to reach an acceptable level of pain management, and to get back to something resembling a 'normal' life. No matter how tough things are for you now, know you can get there too!
And, I hope by opening up my life and my story to the world in this way, you will get an answer--a diagnosis and treatment plan--much more quickly. That's what I hope for anyone visiting this site... to be able to learn from my experiences, and find answers without needless years of suffering.