Showing posts with label insensitive. Show all posts
Showing posts with label insensitive. Show all posts

Friday, January 29, 2010

The Brush Off

When Dr. Wonderful recommended a pain management doctor, I was eager to take advantage of another specialist, a part of a team. I felt hopeful, especially after I researched the different modalities used to treat pain caused by the kind of spinal cord damage that I have.

It is time consuming and exhausting to get to multiple doctor appointments. It is stressful going to someone new. But Dr. W. had said this guy was the best and ‘a good listener’, so I envisioned a consult where I would tell him my history, we would discuss all my options and he would be a guide for my best choices.

The office is sumptuous in a tacky way and very smoothly operated. A tech, who spoke so quickly I didn’t understand a word she said, took my vitals. A Physicians’ Assistant came in and asked where my pain usually was. She did a half-baked neuro assessment and looked at the MRI films I brought with me. She examined them with a furrowed brow and I suspected she had no idea what she was looking at. I pulled up another film. “Do you want the sagittal or the medial view?” heh heh I was proud of that.

She said what she put up, a side view of my cervical spine, was plenty. Then she said the doctor would be right in.

He did appear after a few minutes. I was sitting on the examining table, as I had been told to. He stood on the other side of the room leaning against a cabinet, reading some notes. He asked where my pain was. He frowned and said, “This problem is neurological, there is nothing I can do for it. I will give you Lyrica and you come back in 4 weeks.” He made for the door. I thought of my research and said “But don’t you treat people with pain from Transverse Myelitis?” “No” he said, “call your neurologist, that is who should take care of that. The Lyrica will help.”

And he was gone.

He never examined me, never even came near me, didn’t ask my history, barely even asked me a question, never mind was a good listener. He literally was in the room for less than three minutes.

I sat there for a second, simply stunned. I had thought I would be leaving full of hope at the possibility of a reduction of my constant pain in the future. Instead, I got the bum’s rush. I was so upset I was literally breathless. By the time I got to the car I was crying. What the heck just happened? Where was the ‘team approach’? This doctor could not have been less interested in me. The visit was a complete waste of time.

I guess there are other pain specialists out there. But when you are sick, chasing down good care, finding someone who is not like Dr. You’re Boring Me, is utterly demoralizing. You get labeled as demanding or difficult when you hold someone to high standards, even though everyone should.

Some people think I am brave, but really I’m not. I’m a miserable coward. The likelihood of having intractable pain for the rest of my life leaves me reeling. The idea that a physician who treats pain would be so indifferent and dismissive is infuriating, beyond frustrating. The prospect of having to fight to get what I need is overwhelming.

I don’t know how he is going to bill my insurance company when he never did anything. I don’t know how I am going to handle this, if I will bother letting him know how upset I am. I do know I am furious that I was dismissed the way I was, especially after the research I did. I know there is treatment out there and I am going to find it.

But first I need a lie down. And then maybe an entire peanut butter cream pie from Wegman’s. Washed down with vodka. Lyrica-schmyrica.

I feel better already.





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Monday, February 25, 2008

Being There

As I have said before, I hate having Multiple Sclerosis. It does not make me a better person. It does not make me grateful for what I have or more appreciative of life or cause me to stop and smell the roses. It just makes me cranky, resentful and self-pitying. And sick. Anyone with MS is very sick and probably in constant pain, but we look pretty darn good, so people tend to forget just how darn sick we really are. As I have also said before, there is no justice in this world.

I do believe that most people are basically well intentioned. But they can be incredible knuckleheads. In attempts to be “helpful”, they say the most mind-bogglingly insensitive things. For instance, I might point out it is less than helpful to tell me about the 61 year old woman who has died of MS. I figure at that rate I have about 8 more years. Someone actually told me this. And read me the obituary. And asked me if I knew her, as though I know everyone in the world who has MS.

Guess what? It may be greedy, but I would really, really like to have more than another 8 years. So that is information that I find depressing to the point of paralysis. Telling me about people who died of the same disease I have is probably at the top of my list of things I don’t want to hear.

Some other things to consider not saying, after polling people with chronic conditions:

* My cousin had that and he was cured after eating nothing but bean sprouts (or applying crystals or drinking oxygenated water or meditating) for a year.
* I heard that medicine [that you are taking] causes death, insanity, blindness, extra limbs, take your choice.
* This is God’s will.
* God never gives you more than you can handle, or its obnoxious cousin, this will make you a stronger person.
* Oh, you go to that doctor?
* I believe people who really want to do get well.

Some things to consider saying to anyone who is sick or in any kind of distress:

* I am thinking about you.
* I am praying for you.
* Here is my number if you want to talk.
* I am sorry you are going through this.
* I don’t know what to say, but I care about you.
* Can you tell me if there is anything you need?

People who are struggling, for whatever reason, physical illness, temporary setbacks or something else really big (even if it is only really big to THEM), mostly need support and presence, love and genuineness. None of us are perfect. You don’t have to find perfect words.

Maybe don’t remind them they are going to die. But be there.