Julie and Stella

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 Indiana Opoid Lawswitching) 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:

Another Speed Bump in the Wild Ride of Sacral Agenesis

Sunshine: The Joy of Getting Back to Normal

Time is on my side, yes it is…

Road Trip (My Life with Sacral Agenesis) 

The Beginning – Julie’s Mom’s Story 

A Day in the Life with Sacral Agenesis 

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time 

My Life After the Fall 

When You Are Feeling Down, You Need a Hug

Time Will Tell (What’s Next? Dealing with Sacral Agenesis)

When Times Get Tough-Watch a Movie:  the Power of Distraction in Chronic Pain

Growing Up with Sacral Agenesis:  What It’s Like to Have a Pediatric Problem in the World of Adult Medicine

In Chronic Pain and Playing the Waiting Game

Failure of Transition – Going from Peds to Adult Medicine with a Congenital Condition

Oh We’re Not Gonna Take It Anymore…

Raising a Twin with Sacral Agenesis – A New State of Normal

Eureka! A Surgeon is Found – (aka Julie’s Happy Blog)

Happy Birthday Jules! 38th Birthday, 48th Surgery

The Flood

 

19 COMMENTS

  1. I totally understand what you are going through concerning the pain clinics. As of a couple of months ago my doctor forced me to begin going to a pain clinic for treatment of my back problems. He said it was because of new laws in Tennessee. I have a herniated disk, bulging disks, spinal stenosis, arthritis, and disk degenerative disease. I have dealt with the herniated and bulging disks for about 17 years. It is an ever present condition that prevents me from having any kind of normal life.

    I have only had 2 appointments so far and by the time I leave the appointment, my blood pressure is so high that it takes the rest of the day for me to calm down. I get so angry at being treated like an addict before they know if I am one or not.

    Upon my first visit, I had no real idea of what to expect as I had never been to a pain clinic before. Well, the first thing I had to do was fill out pages and pages of questions with questions like “do you share or sell your pain medicine”. Really? How stupid is that?? LIke an addict or dealer is going to answer yes to that. Then, when they seat you, they give you a number to be called by, instead of your name. For some reason this really, really bothers me and irritates me. I am a person, not a number! I feel like the guy on that insurance commercial where he is waiting for his cold cuts in the grocery store. They call his number and he yells “44 ladies that’s me! Whoo! Gonna get some pain meds today!” As he slaps his number on the floor and dances! I swear I am gonna do that next visit!!!

    Anyway, so my first visit, they call my number even though I was the only one in the waiting room, which was totally ridiculous in my opinion and so I go back where they tell me to sit down so they can take my blood pressure. As I am sitting there they chatter amongst themselves about their everyday lives never paying me any mind. Never looking directly at me, never asking how I am. Then they weigh me. Then after that, I am standing there waiting for them to finish their conversation before I am lead back to a room where I stand and wait for them to type a few things into a computer before I am suddenly asked if I have anything in my pockets. I must’ve looked confused, which, I was, to then find out I am going to have to pee in a cup where I am told not to wash my hands or flush the toilet. I was infuriated to say the least. It took me days to get over that.

    Then I am taken to another room where a nurse asks me all sorts of questions. Then the doctor comes in. Once he discovers I have fibromyalgia, he then tells me a lot of my pain could be caused by this. Last I checked, fibro has nothing to do with herniated disk pain. So then, he tells me it has been a few years since I had an mri and that I need a new one so that he will know if my back is better or worse. Better? Please. Well, between my first and second appointment I start having a lot of pain and limitation in my upper back. I was unable to do housework of any kind, etc. So, on my second appointment I tell the doctor about this. I tell him that years ago when my lower back would do this, my doctor would give me a prescription of prednisone and that it would clear it up. He said he doesn’t like to do this for various reasons, that he likes to do injections. I don’t do injections, because several years ago I got a series of 3 injections in my lower back that just about did me in. I was in twice the amount of pain than before and was able to do less activities than before. Then he tells me it is probably just my fibro causing this pain. It was all I could do to not act a fool when he said this. I think I know the difference since I have suffered with this type of pain for over 17 years!! So this past month I have spent a lot of time flat of back with my house falling down around me. Oh I forgot to mention I also had to pee in a cup on my 2nd visit and I asked if this was something I was going to have to do every visit and the nurse said “yes, until we see consistent results, then maybe we will only do it every other month”. In my opinion, this is being treated like an addict. I don’t like it one bit and I hate being treated this way. It is wrong!!!

    I hope you see this post and respond. And I hope I will know if you do. I am not used to posting on blogs and don’t know if I will be alerted when and if I get a response.

    I wish there was something we could do about being treated like this because of stupid new laws. Over about the last 6 years, there have been so many new stupid laws, it’s like living in communist China, and it makes me so mad!

    • Hi! I appreciate your response but if you knew the staggering amount of people under served I wonder if you’d feel differently. As my blog stated it is how I’m treated and trust me w a system automatically assuming everyone to be an addict it’d be darn tough to be one. It’s because I don’t have a problem that I’m willing to endure a two phase operation for a spinal cord stimulator I’m trying to be the voice for others who fear further judgement like your comment implies. Ask yourself would an addict have two painful procedures to naturally reduce pain? So many, like you judge and assume if you even legitametly need help you are going to become addicted. Did you know that even a drug addicted treated w medication for a medical issue will not become an addict. It’s when a person takes drugs recreationally they become addicts. If you can’t read the physical pain I endure and empathize then it’s like all the others who assume a person is automatically an addict even they endure unbearable pain. So thanks for your concern I’d become an addict but am surprised bc the blog was about the mis treatment of a patient in pain. I don’t need anyone’s approval I just wonder what part of this entry resonated with you? Clearly not the empathetic or human compassion part which was the point. My intention was to show that my specific md, I’m switching as stated, treats each patient not as a human but as an addict. Thanks for the dialogue. I appreciate your input but wanted to clarify my perspective. I hope you never know pain that takes away your quality of life and then be treated poorly by the medical community.

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