Day 12 of the WEGO Health Blog Challenge: Stream of Consciousness-my horrible experience with an NP at a pain center near Boston

Posted: April 14, 2012 in Do Doctors Care?, Medical Conditions, Pain, Uncategorized
Tags: , , , , ,

We are just supposed to write, and not edit. Not grammar, spelling, punctuation. Yikes. Just write whatever comes to mind.
Here goes.

I look Into the mirror,and quickly look away. I see what the last several years have done to me. They aged me. Thinned my hair. Made me fat (fat for me- when you are small 25lbs shows.).
Not sure if I want to post this. It may turn out too mean or controversial.
I thought i’d recently found a good pain place. a group of docs that claim “we don’t treat pain. We treat people with pain.” Well, no, no you don’t, not really. The docs I’ve met, 3 of them, are pretty cool, and do not come across as typical MDs. Until this last appt. My choice to have the surgery that changed things more for the better than anything else ever has, the neuroplasty by dr. Filler, was criticized in a passive-aggressive manner by one of the docs. Then a NP, who was so unreceptive I cried after she left the room(and I don’t cry easily), was reading the note from my initial eval, and the note led with: “patient has a history of autoimmune hepatitis.” Why lead with that? A one time occurrence? That happened in 1996? Really? I am at the pain clinic for chronic neuropathy! In my SI area and leg. The definition of autoimmune hepatitis is: “Autoimmune hepatitis is inflammation of the liver that occurs when immune cells mistake the liver’s normal cells for harmful invaders and attack them.” WHAT THE HELL DOES THIS HAVE TO DO WITH MY CHRONIC PAIN? After that 1 occurrence, I haven’t had it since. Oh wait, hepatitis=hallmark of an IV drug user. WHICH I AM NOT NOR HAVE I EVER BEEN. Nice. How nice to be labeled. By people that don’t know me at all.
So, the initial eval doc obviously wrote this, and this info was deemed by him to be of some major importance. This info was on page 3 of my history of medical issues. It wasn’t at the top of the page b/c it started with A.

(Let me add that at this time, I was experiencing a new pain in the L side of my back that would twinge when I moved – sent hot searing pain into my back and a weird pressure and numb feeling down my calf. I had been at the place since 12noon. It was now 245pm. I had no food, and only water since 1030, when I left the house. I was sooooo uncomfortable. I wanted to go home.)

Second problem with note from my initial eval: “patient complains of back and leg pain, STARTING IN THE MID-BACK… stop right there. MID-BACK. Not once, not ever, not since the beginning of this problem(1997), have I EVER stated my pain was in the MID-BACK! I have always stated, and pointed to the exact area, that my pain started over the RIGHT sacroiliac joint. HUGE difference. Those that know back issues know what I mean. I was probably lied to by the first docs I had seen in 1997 so I could fit into their test group for the spinal implant device. “Referred pain” is what you have…blah blah blah. I bought it, at first, b/c their explanation made sense, but then, it stopped making sense when I started reading medical texts (real books, not the Internet versions back in the late 90’s) about what patients should feel if they in fact had “referred pain” from compressed nerve roots. I didn’t have these symptoms. Nope. My symptoms lined up with entrapped NERVES – peripheral nerves – often reported in athletes (I was a powerlifter from 1991-1994, and a serious weightlifter/trainer after that), that started having symptoms that included pain down the leg after a trauma (I was rear-ended by a car going 50mph, I was at a dead stop with my foot on the brake). And that was from a textbook written well before the publicity of piriformis involvement (and the subsequent bad rep it got from orthopedic surgeons that publicly called anyone complaining of symptoms of piriformis involvement “liars and malingerers.” Why-because they lose business most likely. No one with piriformis issues needs orthopedic/spine surgery!!!
Why do doctors cling to this belief, and claim that piriformis involvement is unproven, when it has been clearly shown by numerous studies, to be a key factor? They can’t prove nerve root compression either, if you use their standards of judgment.
Dammit, I have lived with this pain, getting worse and worse, for 15 years, and I have found only three doctors that support my description of the constant pain i experience with the diagnosis of peripheral neuropathy caused by nerve entrapment. I AM SO F!?@$& angry that I am not believed!!!
Now, the NP eval – for “acceptance” into their medication management program – got off badly when I started telling her the incorrect statements in the report she was reading. I kept asking, over and over -Where were my history sheets that I brought in – all four of them – that detail my history? I write this stuff down for a reason-I can’t remember the name if each and every doctor, chiropractor, and health practitioner I have seen for this problem! I can’t remember every medication I took that I tried, and that failed after 2 weeks, 4 months or 3 years! She never looked for my papers. She got more and more “short” with me, cutting me off mid-sentence, not allowing me to completely answer ANY question of hers, especially when she got to medications. And then, the accusatory tone – “why did you QUIT going to the other pain management centers?” did she write down the answers when I told her my experience with the nasty doc at Arnold Pain Mgt that told me, with a smirk on her face, that, “you just looking to get narcotic. You can manage your pain with 800mg Motrin.” How’s that for bedside manner? Or the doc that told me I had 2 choices – a morphine pump implant or a spinal stimulator implant. No medications, no nothing else. If I didn’t accept those choices, then he “didn’t have anything else to offer me.” this NP never got to hear that b/c she cut me off. Nor did she get a complete list of meds, which she expected me to rattle off like the alphabet. I tried to look in the records I had brought with me (2″ thick folder), but she stopped me, because “she didn’t have much time.” she asked me “what is your goal-why do you want join our med management program? (What IS this-the Army? I thought. I’m not joining anything – I am switching prescribers…) ” b/c my PCP doesn’t want to mange my pain meds anymore.” WHY IS THAT she snaps back? “I guess getting tired of it-he has been doing it for 7-8 years!” I knew that wasn’t the right thing to say – but i didn’t know what the right thing was. I tried to add to that, i said i wanted to go vpback to work, to get my life back, that i had no life as it was now. But, I was on the verge of tears, I was SO angry, as I knew my fate was resting on this interview. I KNEW she was pissed and I’m sure she knew I was when she told me a lock box was req’d to be in their med program to prevent theft(laughing, I couldn’t help myself-WHAT?? I blert out). To prevent theft! Right. A 20 dollar lock box that a 10 yr old can open with a hammer and screwdriver-that’s their solution to preventing medication theft!? Seriously? I still can’t help but to laugh at that idea. She shows me the pain scale – suggests I read it and learn it as EACH TIME I come in I have to tell her my pain level. Really? F&’@!& DUH. Never saw one before – NOT. 15 years-remember?? 15years of ever-increasing pain! Pain that TOOK AWAY MY LIFE!!!!
I really HATE it when these heath care people assume everyone is so stupid that comes into their god-like presence. How about treating everyone as a functional adult and peer instead??
She asks me if I have any questions-I am looking over the 2 pages of requirements-their “contract” and several of their requirements are insulting. To a person with 1 yr if pain, maybe not, but to someone with 15 yrs of pain? Condescending. Yea, I should have just smiled and nodded my head. I start to say, I don’t understand…she CUTS ME OFF AGAIN, I suggest you read this over, CAREFULLY. Before you come back. She left the room, I stood up because my back was KILLING me. I cried. And cried some more. I thought I was quiet. Some MA comes in and asks me if I’m ok – NO! Quite mad right now. He stares at me – deer in headlights – leads me to another room to see the next person who will take part in deciding my fate. At least this next guy was nice – or at least seemed nice. I tried to explain that I was hurt and upset. I didn’t want to come across as a wuss. So I turned on Officer Lori. Humorous answers to all questions, followed by a laugh from one side of my mouth. My back is screaming in pain. I tell the guy casually that I know I probably won’t get into the program, based on how nasty the NP was and how I didn’t get to completely answer any of her questions, because she wouldn’t let me.

I made a decision – based on this experience and the experience I had recently with my PCP (he got upset b/c he claimed he didn’t tell me to increase my pain med through this period of pain-when he defiantly DID – why would I do it otherwise? And demanded I go back down in my dose. And, based on the fact that no one (docs, pharmacy benefits insurance dopes) that these patches come off when I move about – I save them and show him – Kurt is a witness to what happens to them- based in all of this:
Effective today, April 14, 2012, I am getting off of these things. I will live in pain. I think that everyone thinks I should be punished for something.
Well, here it goes.
The ultimate punishment.
Cold turkey off of my medicine. Just as if i was some dirty street addict.
If I stop posting in a few days, you’ll know why.

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Comments
  1. jody ferlaak says:

    Wow, wow, wow. I am so sorry for your pain, your experiences with people whom you come to looking for help and relief, and I am sorry you have such limited options that giving up seems the best one. I don’t know why I am writing to you, other than to let you know I am sorry, I have “heard” your anguish and disgust and frustration and I actually said a prayer for some comfort and peace in your life. Starting now. I hope it comes to you without medication- only the only way I know that can happen is through healing from something greater. I truly believe in a God who understands pain and suffering, and who is able to heal too. I have lived through trauma and death of my little girl at age four and with a daughter compromised with a closed-head injury. Our lives might not have the same kind of constant pain, but I believe we share pain in common. I don’t know why some of us have to journey through life with hurts that never end, but I can honestly say that believing in the One who can bring purpose out of pain has been a huge factor in my being able to live with such great hurts. I am so sorry that life has brought you to such a dark, hurtful place and that the trusted professionals and caregivers have let you down. I just want you to know that somewhere in the world your cries here were heard…you are cared for at this moment by a total stranger in this world. I hope that my prayers, to a big and mighty God, on your behalf, might be a tiny bit of hope for you. I would invite you to lift your broken heart and spirit and pour out your desperate state to the One who holds this world in His care. He may not heal your pain…but He can and does give comfort and peace that passes all understanding. No medication or dose of anything can do that! May you find that God wants to meet your needs today and in all your days to come. I send my sincere prayers for your relief from pain and hope that you will feel God’s healing hand on you. Thank you for writing. I know that is good for the soul. My best to you. Jody

    • Lori says:

      Jody,
      Thank you ever so much for your comment to my blog. Oddly, about 15 min ago, I felt a peace and calm come over me. My heart palpitation quieted down. I was feeling pretty badly as well – one of those Self-hatred moments of “how come everyone else gets help but me?” I had been reading forums on all the legitimate sites related to chronic pain…
      But now, I feel OK. I can deal with the other pain when my brain is not distressed as well. So yes, your prayers touched my being. Thank you. Thank you for writing such a heartfelt comment and thank you for sharing your story. I am so sad to hear about your loss. If you lived in the Boston area, I would know who to send your way – a friend of mine helps people that have lost children. She is a well known medium, and does some amazing work with hospices, the local children’s hospital and the patents group. I knew her before her gift became active, so I know she us the real deal!
      Thank you again, Jody, or understanding, for your prayers, and your words that warmed my heart.
      May God bless you and reward you for you kindness.
      Lori

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