July 2019

Something between the months of July and August of 2019 changed. As I was grieving the loss of myself and struggling with accepting that this disease was winning, my mind began spiraling down. I’ve written before how I have hit rock bottom. Little did I know I could pass rock bottom and go further down. After months of deny, deny, deny I had lost ALL hope. Nothing in this entire process has gone my way. (Not to sound whiny, but seriously, anytime I’d get good news, something would always come in and wash it away.)

At this point, I felt as if a large brick had been chained to my foot and I’d somehow been thrown overboard. I slowly passed the rock bottom I had hit earlier in my journey and was sinking even further down. I was trying with all my might to swim up, but my strength was gone. The pain I was experiencing was still there, the hope I once had was gone, and I couldn’t rely on the powers that be to help. I was stuck; chained to the bottom of the sea. Stuck trying to change my mindset, trying to believe “they” wanted to help me, but that did not seem to be the truth. What appeared to be true was every decision made came down to money and what was best for the bottom line, not what was best for me as a human being.

Needless to say, I was getting scared. Scared of my dark thoughts, scared of what I might do, and scared that I may never EVER get the care I needed. No matter how hard those on my side worked, no matter how hard I tried to keep up with all my therapies and tools in my pain “tool kit,” this disease was taking a toll on my mental stability. The lack of hope and increased pain caused me to slowly gravitate downward.

I finally decided (with the help of my own medical team) I needed to be honest with my treating CRPS doctor. I knew it wouldn’t be easy to admit, but I had to let him know how I was feeling. Not that I believed it would do anything, but he needed to know what types of thoughts I was having and how the CRPS pain was wreaking havoc on my mental health. So I called and was asked to come in right away. (WOW that was something positive!) I wasn’t looking forward to the conversation because my treating doctor wasn’t a psychologist, but I knew he needed to know, whether he listened to me or not. I dragged myself to the appointment praying for God to give me strength and the courage I needed to be open and honest.

When the doctor called me in, I was already in tears. I took one look at him and vomited out everything about how I was feeling and how scared I was about what my head was telling me to do. How the pain wasn’t getting any better, and how I’d been without any type of treatment for almost a year. The doctor gave me exactly what I needed that day; he listened. He didn’t speak, he processed everything I said. For once, I felt heard.

The saddest part of this story is it took me spiraling to the darkest moments, and being completely honest about them, to get anything to change in my treatment plan. The minute I finished vomiting everything out, he immediately wrote me a script for pain management, physical therapy and pain psychology. Immediately. Did you hear that?  IMMEDIATELY!!!  Did that make me hopeful?  NO. The powers that be had to approve it, and I was confident that wouldn’t happen. (See the Deny, Deny. Deny post.)

Unfortunately, I was right; the orders were not approved. My team had to fight for everything recommended by the doctor. It is hard to believe that a health care provider cared about my mental state enough to recommend necessary treatments; however, they were denied by the powers that be as quickly as they were written. It is a hard pill to swallow that people are making decisions that are detrimental to my physical and mental well-being based on a dollar sign.

As I’ve written before, I miss my old happy self. It’s gone. I’m having difficulty finding any ounce of that left in me. This entire process has taken it all out of me. I’m exhausted, I’m hurting, and I’m tired of fighting the system. It seems that the fight they continue with me is in hopes that I will give up and move on. Giving up is where I was at that time. With each passing day I got worse and worse and struggled to find the will to live. (Of course, I wanted to be here for my wonderful children, husband and family and that’s what kept me going.) This entire process has left me empty and in pain. Not only physically but mentally. I wish this disease and process on NO ONE, not even the powers that be.

Although it took some time, the treatments were approved. Despite the good news, I still had to wait for them to find doctors to treat me and appointments to be set. Waiting has always been hard for me. It’s been especially hard through this journey because I’m not the one in control. All I could do is sit back and wait. Would I finally be given the right type of treatment? I didn’t know.

The one thing I did know for sure is during the course of this journey I’ve lost friends. I’ve lost the old me as a teacher and runner. I’ve lost the happy, laughing, glass half full mindset. And I’ve lost all my will to continue fighting. Anyone with chronic pain will understand that. It’s just what comes along with having chronic pain. It’s not cancer. It’s not heart disease. It’s not a brain injury. It’s not an acute situation. It’s on-going relentless pain called CRPS. It’s hard for people to understand. Mostly because they don’t see it or don’t understand why I can’t just get over it. After 6 months, most people in your life walk away. Let alone after 4 years. I’m one of the lucky ones who have family and family friends who have been there for me. Many others have no one.

For those of you dealing with chronic pain. I see you. I hear you. I believe you. You and your treatment of your illness are important. I do hope and pray every day that I can rise above this. It’s going to take time and patience and support from treating physicians who care and can empathize with me. Right now I’m caught in a system that only makes my pain worse. My hope is that one day I will have some quality of life again, and I can help transform the system that changed my world.