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 I went on to explain that most of the pain medication I had were out of date or expired and I showed her the bottles.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.