Rant # 98374987392

In February while meeting with my Nurse Practitioner (NP) –we’ll call her L- I asked if I could step down on the amount of Morphine I was taking. Prior to seeing my NP I was with another provider at the clinic who had started me on Morphine twice a day with medication for breakthrough in between doses.  After about six weeks I was feeling cranky and unmotivated and at times just plain cooked on medication.  So, I asked L if I could step down one tablet of Morphine a day.  She, of course, loved this idea because less medication is always better.

After a month on this dosage, and dealing with the increase in pain due to the lump in my joint I was feeling like the new lower dosage wasn’t quite enough so I asked L if I could adjust for the next 30 days until after I had the lump taken care of.  I was a little surprised at her response.

She told me that she was hesitant to increase my dosage at all based on the fact that I am so young, and that she didn’t want the pain clinic to be my “home” for the rest of my life. She then said that she would prefer me to “tough it out” and “be a little uncomfortable” for the next month or so while I had the surgery (which at the time wasn’t a for sure option) and we could talk about it again at my next appointment.

Now, if you’ll remember, these are two of the things you never say to a person who is dealing with illness or pain. I am not so sure what my age has to do with any of this. Honestly. Am I to understand that if I was in my 40’s that this would be a normal experience? My 50’s? At what age does being chronically in pain or ill become as normal as wearing underwear?

It doesn’t.

 

Ever.

 

Let me help you out here: Age has absolutely nothing to do with pain. Nothing. Zilch. Nada. (If you’ve ever watched Veggie Tales you want to yell “noodle!” right about now….) It would not matter if I was 16 or 60, being in pain is awful and lonely and it sucks.

What also has no business in this conversation is the idea that I would need to be “a little uncomfortable” for a few weeks. A little uncomfortable is what it feels like to have a sore muscle after you work out.  I am in pain.  Everyday.  All day. 24/7. My “comfortable” is a 4/5 on my pain scale. Zero pain? That doesn’t happen here. I am already a little uncomfortable every day. What makes you think I should tolerate more “uncomfortable”.

Here’s my biggest issue when it comes to this stuff; it’s my body.  My body. Not yours, not my husband’s, not anyone else’s. Mine. If I were a woman contemplating terminating a pregnancy and a doctor came in trying to tell me what I could and could not do there would be protesters at the door. Why? Because it is my body therefore I am in control of it. All of it. I’m not so sure how this is any different?  Present me all of the information for each treatment option and then get out of my way. This is my life, my body, my cross to bear regardless of what I choose or don’t choose to put in it, on it or take out of it.

Now of course there are limits to this considering what these medications are. I’m not foolish enough to believe that I’m not physiologically addicted to the medications. The reality is anyone on an antidepressant, anti-anxiety medication or a handful of other meds is also physiologically addicted.  (For those of you who don’t understand the difference between an addict and being dependent I demand you educate yourself promptly.) But so long as I am following the rules of the clinic and coming in with the proper amount of medication at each visit I don’t see a huge reason for you to dictate how much pain I can tolerate and still be happy.

I know I’ve said before that unless you’ve lived it you can’t possibly understand it. As I’ve traveled down this path I’ve discovered that even though I’ve lived it, I still can’t fully understand it. Pain is subjective and there is no real way to measure how much pain one person feels verses another. The only real way to know is to be told by the person suffering.

I have a friend who is living with Fibromyalgia along with a few other diseases that make her whole body hurt and do mean things to her. While I can say that I too have chronic pain, I cannot fathom what it is like for her. While I do hurt, I have pain in a smaller area of my body. From waist to knees on most days. I can empathize with her because I understand what living in pain is like, but I will never truly know what she is experiencing because I am not in her skin. We call it “Same, but different.”

Which brings me back to this idea that someone –even a person who specializes in pain management- would feel capable of knowing what I’m feeling and not feeling. Textbook wise she understands how pain travels from the brain, what kind of pain is nerve or vascular and she understands how medications would work to alleviate this pain. That’s where her understanding ends. Without ever crawling into my body and experiencing life with me, she will never know how I hurt and how I feel.

Which brings me back to the beginning. Somehow I need to be able to talk with her about how I’m doing, what my pain levels are, and how we can adjust to make it work. It’s terrifying; the idea that this may or may not work out in my favor.  It is so very hard to not be in control of my life when it comes to something like this.  But that’s another post….

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