When I previously wrote, I spoke of mostly personal topics because that’s what this blog is meant to address. Currently, I’m in unbearable neurological pain of an unknown etiology which cannot be corrected surgically. I am getting a spinal cord stimulator to help. The trial phase is April 7th. Wish me luck!
While we are on the topic of pain, I’d like to discuss my experience with “Pain Clinics,” since I’ve actually gone to one now. Sure they offer medication but never discuss the psychological component to pain. I am merely seen and treated as they treat every patient that comes through the doors. Some of their limitations are because of a new Indiana law that governs how pain clinics have to function in my state.
I am automatically assumed to be an addict
It is assumed that anyone who goes to a pain doctor is already a drug seeker and an addict and thusly treated. I’ve never been on medication except for post-surgical pain. This is the first time I’ve had to use medication to get through my day-to-day life. I get so nervous before every appointment because I know it will be like being in front of a judge. The amount of pain medicine a person uses is automatically assumed to be associated with an addiction.
My pain has gotten greater and greater as time has gone on and I really cannot wait for the stimulator. I am hoping that I will be able to be off the medications or greatly reduce them after I get it. The Pain Clinic I attend, (I’ll soon be switching) made me sign an “Agreement.” Some of the items I had to agree to, like I will check in every 3 months, are said to be because of the new law, but others are not. They are imposed by the Clinic I attend. For example, they will not call you back if you call. You can only discuss your issues at these set appointments. What happens if you have a reaction or run low on a medication because of other issues which arose that month? I recently had a kidney infection which was very painful and took weeks to diagnose. Because of my sacral agenesis and related complications, I’m so used to back pain that it was difficult for me to differentiate from flank pain until they did a specific test for it and a CT.
The doctor in my pain clinic treats all of the patients as if we are the same even though each of us come from different walks of life. Yes, I am aware of the abuse of the system – just like disability or any other process which is subject to fraud. But should the doctors really treat all patients in the same way regardless of their individual circumstances? I think not. I am not a problem patient, yet I feel so nervous and so judged when I see this doctor. Hopefully, I will end up with a new one who will want to partner with me while I transition to the spinal cord stimulator. My current doctor isn’t really interested and just wants to see me or hear from me at appointment times for 5 minutes. I feel very victimized and scared and alone in my pain. No one can truly know how bad it is except me. I convey it upon deaf ears.
It’s been a very hard time
It’s been hard this time dealing with loneliness. But I take it minute by minute and by the grace of God I get through each day and then each night. He gives me the endurance to come out with hope and strong character. ord knows I have character, right?! I find my smile for those who cannot handle hearing about the suffering. It still always comes down to what others can handle so I find myself very isolated. That is why myh husband Mark and our golden lab Stella and my family give me comfort when they can. I find myself fighting tears daily, but find something to smile about instead. I don’t deny my feelings and Mark is the strongest shoulder to lean on. God knew what he was doing when he matched us nearly 14 years ago. We truly balance one another.
But ask yourself, should a person feel the way I do because of laws that are passed which dictate how a doctor can treat or even the insurance companies’ control? It’s not right that the patient suffers beyond the physical pain. Everyone in the medical world knows there is a psychological component to pain. I had to see a psychologist as part of the process to be approved for the Spinal Cord Stimulator. This was to make sure I really was in pain. It baffles me and I think it’s important. Through my tears I ask that you think on that, really think on that.
Thank you, dear readers, for listening and I hope you walk away questioning new laws and regulations being passed imposing adjunct treatment options. Also, growing up with Sacral Agenesis, I know what pain is. I have lived with it my whole life, but finally, my nervous system could no longer mediate the pain signals appropriately so the signals are going “haywire,” sending unnecessary pain signals to the brain. The spinal cord stimulator is designed to mediate those signals and prevent the perception of pain in the brain. Essentially I won’t feel the excess of pain I currently experience which is breaking down my spirit and causing a physical decline.
I usually sign off with a happy song since I’m the queen of optimism but today I sign off with another favorite by Simon and Garfunkel, “I Am A Rock,” which describes my ultimate sense of loneliness and fear.
This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis. When we last heard from Julie, she was recovering from a complex surgery to relieve severe pain related to complications of her condition. Things were looking up. Although we greatly missed her wonderful posts, we were delighted she was reveling in her return to normal life with husband Mark and good dog Stella. We are sorry to learn that she once is dealing with severe pain, but as Julie aways says, there is a silver lining – she is once more writing and sharing her story with us. Welcome back, Jules! We love you and wish you well.
Links to the other posts by Julie: