It’s Sheer Madness…

I am mad and I am not going to take it anymore. Let me explain further.

Earlier this week I had an appointment with my pain management doctor. This is the second pain management doctor whom I’ve seen since moving to Virginia. The first one, a woman, was kind and friendly and did her residency at Johns Hopkins. In fact, she thought she remembered me from when I went to Johns Hopkins to find out what happened during Dr. Liar’s surgery. How ironic. After my third office visit, she told me that she was relocating and I would need to find another doctor. I was disappointed since there isn’t a huge pool of pain specialists in the area where I live. However, I found one and have been seeing him for many months.

This week when I was scheduled to see the pain management doctor; however, I saw the nurse practitioner instead.  I told her that I could no longer get epidurals or any type of steroid injections due to my newly diagnosed autoimmune disease. I explained that because of this, I had been taking pain medication when my pain was severe.

What occurred next was such a surprise.  Instead of talking through the situation, her demeanor changed and she treated my husband and me as if we were there just to get a prescription for pain medication. While I explained that I only take pain medication as a last resort — that I only take it when walking and sitting become painful or when I am unable to manage the most basic skills in my life.  I went on to explain that most of the pain medication I had were out of date or expired and I showed her the bottles.  It didn’t matter to her if the bottles were full or empty or if they were expired or were brand new…with a look of meanness — all she cared about was that I was asking for something that was forbidden.

As she jumped off the exam table (yes, I guess she wanted to be the patient), she told me that if I wanted pain medication I had to sign a contract and could only get pain medicine from their office — and only after I passed a urine drug test.  I also couldn’t get pain medication from any other doctor and if I did I would no longer be their patient. She also mentioned that I would have to submit to random urine drug testing.

When she left the room, my husband and I sat in disbelief and couldn’t believe what had just happened. What did we do to deserve this type of treatment?  I am the person who waits until the last-minute to take pain medicine and it’s usually when I have exhausted all other resources.  Most of the time it’s my husband who tells me that I might want to think about taking something since he can see the pain in my face and usually my blood pressure is unusually high. I have a documented spinal cord injury, Cervical Dystonia, lower back disc problems, carpal tunnel in my right wrist, Restless Leg Syndrome, edema, numbness on the entire right side of my body, problems walking without assistance, migraines, A-fib and flutter, Cervical Myelopathy, Essential Tremor, just to name a few.  All of these problems and I can’t get medication to help manage my daily chronic pain. I am in some sort of pain each and every day and I am made to feel guilty for asking for medication to help me live my life more comfortably.

It seems that those who abuse pain medications have made it difficult for those of us who need some type of assistance. And, I can understand why so many people seek alternative ways of finding medication since the medical community isn’t there when you need help. When your doctor won’t listen to you, a doctor who specializes in pain management, won’t help, who is going to assist with what you need? Living with pain can get so bad and make you feel so out of control that there are times when suicide has even crossed my mind. How do you explain this to your doctor without him admitting you to a mental institution?  I know what I need — another pain doctor, but the thought of being treated so poorly by another doctor makes me feel sick. I think the only thing that will help is if the pain doctors had to live with chronic pain for a day so they could understand how it feels. The doctor as a patient is quite possibly the only way they will know and experience firsthand what it is like to deal with pain that is so powerful it takes over every aspect of your life.

On our way out of the office, the nurse did hand me a prescription for pain medication — one that I told her I had taken before and didn’t help ease my pain, but she insisted that I try it again. Did she not hear me or did she not listen? Or, did she not care? Did she have some sort of protocol that she has to follow and it doesn’t matter what I need? I am scheduled to see her again in a month to report how I am doing and if this medication is helping. I could save both of us some time and money and tell her that taking this particular medication is like eating a Pez. Nothing. No relief. I am in the same amount of pain I was in at the beginning of the week. Maybe more since I am now mad and in pain. So the search begins for a new pain management doctor.

If I were to stay with this practice, imagine how the next conversation will go? I will tell her the medicine wasn’t strong enough and didn’t have any effect and wait for her reaction. She will look at me with disgust and the process will begin again with her giving me a weak prescription for another lightweight medicine I know will not work.

I guess this situation came as a surprise to my husband and me since my previous doctors had no problem dispensing pain medication. Was it because they knew me and there was a trust factor? Did they better understand my injury and what I was going through? Where they more caring and compassionate doctors? All I say is that I have never been treated so poorly by a nurse practitioner — especially one who had never met me before or didn’t know the extent of my physical limitations and pain. I wouldn’t let my doctors in Pennsylvania have treated me this way and I certainly won’t allow my current Virginia health care providers treat me poorly either. After all, there are alternatives. All of my doctor’s tell me that I have a high pain tolerance and that I don’t have to live with pain. I guess the pain management staff I see studied under a different way of teaching or either they have dispensed prescriptions to those who didn’t truly need them and have gotten caught.

In addition to seeing my pain management doctor, I worked with my internal medicine doctor to try to get a compression machine to help the pain in my legs when I sleep. While it should have been an easy process between the distributer and my insurance company, it ended up being four weeks of endless telephone calls, paperwork and approvals, In fact, I still don’t have the machine. Could it be that the insurance company wants to make us so frustrated so that we throw up our hands and give up? I guess they don’t know me very well. If I could get the compression machine, I could possibly stop taking three medications that I take nightly for Restless Legs. Medications that are most likely damaging my liver.

One exciting thing that occurred this week that the blog surpassed its 20,000 hit. That means that more than 20,000 hits or readers have clicked on the blog and read a post or maybe more than one. Never did I think that a small, simple blog about my life would be of interest to friends, family members and complete strangers. And, the comments that people write — those are what keep me going. And, many readers tell me how much I have helped them. To me, that is what makes this all worthwhile.

Now that I have vented and despite my frustrations with the medical community and the constant pain I have been in, since writing this post I was reminded of one of my favorite Helen Keller quotes:  “Although the world is full of suffering, it is also full of the overcoming of it.” I believe what I need to do now is just move on and put the past behind me. No doctor or insurance company is worth getting upset over. If I let them get to me, then they are the one with all the power. I am moving on and I thank you for letting me share both my ups and downs.

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About mswd

I am an individual living with a spinal cord injury. How the injury occurred, how I found out how severe my injury was and how my planned life suddenly became 'unplanned' is included in this blog. Also included is how the injury has tested my family and me. I believe you will discover it has been both a mentally and physically challenging ordeal and I learned a few lessons along the way. While I am still defining my life’s purpose since the injury, I have uncovered those who are injured, live with pain or have other obstacles to navigate are never able to escape. However, come with me as I explore ways to improve my life, learn to live with multiple neurological conditions, educate others and look for the silver lining. I believe with a little willpower, my caring family and God's guidance I will learn to forgive, hopefully forget how I was treated and dismissed by a doctor and uncover life's new purpose. I pray for painfree days and answers to questions that keep swirling through my mind. I also pray for a cure for neurological conditions and for the doctors to treat their patients with respect. Welcome to my journey. I would love to hear about yours!
This entry was posted in Atrial Fibrillation and Flutter, Dr. Liar, Faith, Medical Malpractice, No regrets, Pain, Pain Management, Pain Medication, Self Discovery, Spinal Cord Injury, Writing and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

4 Responses to It’s Sheer Madness…

  1. Reba Nelson says:

    Thank you for this blog. Victims of mainstream medicine need to know that they are not alone. Whatever you do, do NOT attempt suicide. I’m in the process of writing letters about my July Temporary Detention Order ordeal following a suicide attempt. The all powerful Community Services Board needs an evaluation. I sincerely hope that BonSecours – Richmond Community Hospital rots off the face of the earth. The State of VA can lock you up for up to 30 days (with cursing and ranting psychotics, with no way to escape from blaring televisions, with no physical exercise, with hateful technicians who chart and evaluate your activities, where you are at the mercy of a smartass psychiatrist who overmedicates you, without reading glasses, without a change of clothes, etc.) I would not wish this experience on the worst person in the world, and certainly not on you. I can only work on my letters for a short time each day before I’m too blinded by pure rage to continue. I hope you find a new pain medication team quickly. But whatever you do, don’t mention the “S” word. The Community Services Board has the support of the law. You can be locked up. Like the wise man said, “Even the tender mercies of the widcked are cruel.” Don’t let them get you!
    Keep up the good work. Looking forward to your next entry.
    Reba

    • mswd says:

      I honestly know and believe that life isn’t fair. I guess I just want all of us to be treated equally and with respect. I was used to being treated horribly by Dr. Liar and the others in PA, but was shocked when it happened here and to me with all the injuries I live with on a daily basis. Do I want sympathy…no? Do I want compassion…no? All I want is help managing the pain that the medical community put me in to begin with. However, when I read about your ordeal, it does make me feel like the entire health care does need an overhaul. When you are hurting…either emotionally or physically there should be an organization to listen and then respond appropriately (certainly not with treatment like you received — how does that help anyone?). I believe that at times having someone to talk to is the best medicine. In my case for the increase in pain, I should have just walked out of the exam room. I would have at least felt better about myself and maybe she would have thought about her actions as well. If doctors don’t listen to their patients…then who will? Maybe we need patient advocates, but then that opens up another can of worms. I think what you are doing is terrific…writing the letters, but don’t make yourself upset. Use the writing as a way to help heal and to educate others (like you did for me). They are at fault and point out where they went wrong and how things can get better. Thank you so much for your messages and for taking the time to write. I love hearing from you and hope that all of us will continue to grow in love and in life. Blessings to you always! XO

  2. Brenda Jennings says:

    Having managed a pain managment doctor as well as being a patient of one, I understand how frustrating they can be. Many people do abuse the system but the state of Virginia has a web site that is free for doctors to use that shows each and every perscription, who wrote it, where it was filled and how many pills were dispensed. So there is no reason for any physician to treat you this way. Most have you sign a pain agreement because that is a stipulation of using the website, and some require a urine drug screen which is a waste of time and money for people with documented pain conditions. I have found that alot of pain docs are in it for the money because epidurals and other injections or surgery pay more than just writting scripts for pain pills. Look on the internet for peoples posts on any physician you are thinking of seeing before you make an appointment and be selective. The only way to get on a good treatment planis to find someone who really listens and cares about helping you and not their bank account. I take Nucyenta and it really helps and doesn’t make me feel druged but it does cause me to itch, which is better than having pain so I deal with it. Every day new medications are approved for chronic pain, its just a matter of finding the right one for you. I will be happy to help you find another doctor or give you information on the current treatments available.

    • mswd says:

      Brenda ~ thank you for your kind message. And, I really do understand that there are a few bad eggs in every bunch who are abusing the system; however, what is the difference between PA and VA? I don’t have a problem with doing random urine samples or only getting pain meds from one doctor, but what I need is to at least be able to see the doctor when I request it and for that doctor to at least listen to me and give me something that works. Ultram does nothing for me since I have spent the last six years in pain. Nucynta works, but it puts me in such a bad mood; Percocet makes me hyper and Vicodin makes me itch — and I am unable to sleep when taking any of them. I do use Flector patches, but they are difficult to stay in place. I would welcome your help in finding a new doctor and exploring what would be the best option. You have always been there for me and I appreciate it. Those of us in pain certainly know what it feels like and can understand better than the doctors who seem to look at the patients as if we are just complaining. I will send you a separate message to see when it’s a good time to call. Thanks so much Brenda — it means so much to know you care! XO

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