Multiple Sclerosis and Standing Up for Myself

 

I hope you enjoy my rant below, but just remember that I’m describing my experience and what I believe is right for me.  In no way am I making a recommendation regarding treatment or medication for anyone else.  You do you, I’ll do me.  

 

MS and Standing Up

 

I am a firm believer that having a big brother makes you tough.  I have a big brother and when we were younger, he took this responsibility very, very seriously.  After figuring out that his role was to toughen me up, I realized mine was to teach him how to deal with other people pushing back (we were very astute 5 and 6 year olds).  

At first I would get back on him by simply telling on him.  But then I found that it was far more effective to just fight back- I was able to inflict my own brand of justice without being called a tattle-tale.  I think it was this experience that shaped the way I approached bullies the rest of my life.  I rarely tell on anyone, I usually try to deal with them on my own.  The problem with this approach is that the bully usually doesn’t get caught hitting first.

I remember one year my brother and I went with some family on a lake trip.  We were still fairly young- probably 9 and 10.  We had docked at a beach and my brother and I were playing in the sand.  He instigated an attack on me (I’m sure by splashing me or throwing sand).  And I fought back, probably with more sand or a more violent water splash.  Nothing out of the normal for us, except one of the adults turned just as I was retaliating.  And I vividly remember being removed from the water and punished for fighting.  Despite my protests that my brother started it, the adult said, “No he didn’t, I saw what you did.”  I was furious.  How could this adult chastise me like this when I was just sticking up for myself?  I learned the hard, embarrassing, and swim-free way that those who throw the second punch are usually the ones that get caught.

I had a similar experience this morning when I was sitting in the office of my new neurologist.  Just so I don’t worry anyone, I wasn’t visiting the doctor because anything is wrong, but because I keep getting denied for life insurance because I’m not working with a neurologist to manage my MS.  Which, in my opinion, is total BS, but it’s not illegal.

For those who don’t know, I made the decision almost five years ago to manage my Multiple Sclerosis through diet and lifestyle.  No pharmaceuticals involved.  I weighed my options and made what I feel was the right choice for me.  That’s the beauty of living in the good ol’ U.S. of A.  I can make the best choice for me and you can make the best choice for you.  Right?…

______________________________________________________________________

I went to this neurologist hopeful.  I was really looking for someone who, even though they may not agree with me, could help me blend the innate intelligence of my own body with the best modern medicine has to offer.  That’s all I really want out of any physician.  But boy do I have egg on my face.  

We went though my medical history and my decision to not take disease modifying drugs.  And at that point, he sure expressed his own opinion on my choices.  The conversation went something like this (to the best of my recollection):

Doctor: “I know you feel ok right now, but eventually there will be one lesion and that one is the straw that breaks the camel’s back.  And when that happens, there is no reversing the damage.  There is nothing we can do.”
 
Me: “I understand that.  I weighed out the good with the bad, but to me, the potential side effects of the medication are not worth the potential benefits.  Half dozen of one, six of the other, ya know?”  (Background: to my knowledge, no drug that is used for the treatment of MS will cure or reverse anything.  At best, it will slow the progress.)
 
Doctor: “You are looking too much into the side effects.  Those almost never happen.  It’s like driving your car.  You could die, but you still drive it anyway.”
 
And there it was: the scare tactic.  Never once did he ask me anything about my protocols and what made me feel so great.  He never made me feel anything but shameful for not buying into what he was selling.  What I did get was a lecture on how MS makes you feel.  Ok, dude, I know how MS makes me feel.  I’ve been living with it for 7 years.  
 
Could he not see that I am doing my best to fight back against the biggest bully I’ve ever encountered?  Suddenly I was that little girl, sitting on the pontoon boat on a lake in Kentucky.  Wondering why I was in trouble for sticking up for myself, fighting back tears, and desperate to make him see that what he saw was not the whole story.
 
You guys, I’m feeling just plain angry and hurt.  This was not how my day was supposed to go.  It’s not what I wanted from this visit.
 
Here is what I want: I want the freedom to make choices without being berated, embarrassed, or put down by my consulting physicians.  Because in my experience, patient choice is an illusion.  Patient choice means you get to pick your appointment time and between three different pharmaceutical drugs.  I’ve never encountered any physician where opting out is an option. “Against Medical Advice” is seen as the same thing as diving headfirst into a three foot pool.
 
Listen.  I know there are great doctors out there.  I know there are doctors who are doing their best in a system that seems to be stacked against patients, doctors, nurses, administrators and almost everyone except drug companies, insurance companies, and administrating government agencies.  I know that one misstep and doctors could lose their entire practice due to one lawsuit.  I know it must suck some days.
 
But my empathy for the situation does not mean I’m willing to shrug my shoulders and tolerate it.  For now, I’m going to go back to this doctor so we can do an MRI to check in on my lesions.  Because if something is going wrong, I want to know.  I’ve said from the beginning that I recognize that I could be allowing the situation to get worse and I accept that reality.  I do recognize that modern medicine has some pretty awesome procedures.  But short of an impending catastrophe, I don’t know that my position will change. 
 
___________________________________________________________________
 
Tattling on my MS to the doctors and drug companies didn’t do anything for me.  Fighting back using my body’s innate systems and the wisdom of functional movement and nutrition did.  If I get punished for hitting back, that’s a risk I’m willing to take. 
 
What’s that quote?
 

“I’d rather die standing than live on my knees.”

 
Kelsey Albers

One thought on “Multiple Sclerosis and Standing Up for Myself

  1. “Yeah, well, that’s just, like, your opinion, man.” – The Dude (The Big Lebowski)

    Be quick to listen and slow to speak. Continue to work through the facts and make an informed decision that’s best for you and yours.

Leave a Reply

Your email address will not be published. Required fields are marked *