This morning my phone rang, blaring through my car speakers as I made my way to work through the frigid temperatures. I recognized the number and answered quickly, pulling to the side of the road and focusing all of my attention on the voice on the other end. It was the person who I connected with the most at my pain clinic, where I receive ketamine infusions. She always made sure I was taken care of and that scheduling and procedures were efficient. I crossed my fingers that she would have good news about our appeal to the insurance company.
“Hi Kelly, I’m sorry to be calling with this news. Insurance denied our appeal for your ketamine infusion and our hospital billing department has declared the procedure denied because of this.” She went on to read the statement from the insurance company, “ Patient declared an onset of symptoms immediately after the ketamine was disconnected….CRPS is characterized by colder temperatures, purple discoloration, intense pain and patient only described her feet as “tingling”…Therefore she does not meet the criteria for ICD-10 coding of CRPS.”
Her words swirled around me. I couldn’t translate the statements that came across the line. Onset of symptoms… does not meet criteria. Would not benefit from an infusion??
Tears welled up in my eyes as my voiced cracked, ” How do I not meet criteria for CRPS? I cannot even get my shoes on?” I heard her sigh and her empathy reached through the phone and tried to comfort me. I immediately noticed that I was trying not to let her know that I was crying because I didn’t want to hurt her feelings. Instantly I was mad at myself for once again, putting others first. This was about me. And this could be one of the most important conversations I would have of 2016.
“What does that mean? What does onset of symptoms and pain after ketamine was disconnected mean?” I asked not understanding my own native language.
Again, I felt her exhale. “This is based off of a statement that you made that was recorded by one of the doctors when they turned off your ketamine, 2 infusions ago.”
Why would the doctors put my statement into the chart? My own words were used against to determine that Ketamine did not work for me long term. “But EVERYONE flares up after ketamine, ” I whispered. “Every Single Person has an increase in symptoms when they turn it off. It takes my body 2 weeks to stabilize after an infusion and then I get 3 good months of relief.”
“I know. I’m sorry. There is nothing else I can do. And it is the holidays. The insurance companies have already notified us that for the next two weeks communication will be limited because of the holidays. I’m so sorry Kelly. I have to cancel your infusion. There is no way that it will be appealed and over turn by next Tuesday. I’m sorry”
My insurance company had turned their backs on me. They had been a vital part of my team, helping me through each painful procedure and honestly giving some of the best coverage that an insurance company could provide.
Over the last 2 years I have felt blessed. I did not have to worry with fighting yet another battle in addition to the ongoing battle of CRPS. I felt empathy and compassion for those in my community who fought for coverage. I felt deep sorrow when I heard of an individuals’ family losing everything. Homes, cars, careers just to pay for treatment that allowed them to function at maybe 30% capacity. It is heartbreaking.
How does our country, our government, our medical teams allow this to happen?
I closed my eyes and wondered what went wrong for this to come up, especially now. I had undergone 5 infusions in the last 12 months as my health yo-yoed through the worst days I have experienced in my 36 years on this earth. However,the last infusion was a game changer. I didn’t have any other health complications and I actually made progress, instead of just trying to control a spread or dangerous flare. I was using a wheelchair and crutches this summer for getting around outside of my home and after the last infusion I had made leaps and bounds in an attempt to get back to me. The Kelly who had an active lifestyle. I was up to walking over a mile with my dogs. And I was having moments of no pain. I was over the moon happy about my progress. But in the last 3 weeks I had felt the infusion wear off. My walks became shorter. My moments of no pain became sparse and my mobility once again decreased.
I needed another infusion.
I suddenly felt isolated and left for dead. No matter how many thank you cards I had written to this pain office, they didn’t care about me. Not really. I was just another complicated case that was so frustrating to them because I continued to bring new “never dealt with before” issues to their doorstep. I didn’t fit in their box of “This is what CRPS looks like” and because of complications of 2016 I had not made as much progress as they had hoped. But in my eyes I had won all of my battles, with the help of these infusions.
As panic arose, my mind raced….I had moved to Virginia to get medical treatment. Now here I was alone & hurting. All of the sacrifices I made for my health now felt that they had turned to dust. I could no longer access the medical treatment with insurance giving up. I wanted to give up too.
Exhaustion set in. Over the last two years, I have been blazing a path for those with CRPS. I have been advocating so intensely that it has worn me down. I am a social worker by trade and a natural civil rights advocate. Now, more than ever, I felt that my human rights. My Civil Rights were being violated. How could this medical system leave me in excruciating pain. On purpose.
My Ketamine Infusion was officially cancelled because insurance doesn’t believe I get enough relief to justify doing them anymore. This is like withholding chemo from a cancer patient. I need this to walk. I need this to function. To work. To be a person.
Every single damn day I get up and I walk through fire. I do this because I want to show the world that I am not just Kelly with CRPS. I don’t want that to be my only identity. I want to be known for other things and Ketamine was allowing me to live my life for the first time in over 2 years. And just like that.. .it was taken away from me.
My mind jumps immediately to the future. What will happen? What will my body do as the months get colder? I would like to think that I will be okay but the anxiety around the pain frantically looks for something to hold onto. This disease has never been predictable and it will not start today. I am terrified that I will continue to lose pieces of myself until I have nothing left to hold onto…
a week later…
I allowed myself the space to mourn but I refused to get stuck, reminiscing, and putting negative beliefs out that would set me up for failure. I only allowed the positive a place to settle in my mind. I meditated and reconnected with my body that was hurting so bad. I acknowledged the pain and disappointment. I didn’t create a catastrophe . I simply breathed. Like always, I got up. Dried my tears. Started again. I am looking forward, searching for anything that we help me build a solution around this problem. Even with miracles of ketamine taken away, I know that I will not die on this hill. I will take this time to regroup, strengthen & find a way through this barrier.
For those of you dealing with insurance companies, denials and difficult medical personnel that are creating barriers to your health…DONT GIVE UP. When you are too tired, find someone who will advocate for you. Use the Social Communities for strategies, rebuild and come back to the issue strong. Do not give up. Just breathe and whisper #nottodayCRPSNOTTODAY