Pain by the numbers

I used to love paint by number kits when I was a little girl. Large black and white detailed pictures with teeny tiny numbers in each space. Those little plastic pots of paint and a tiny brush. Filling in the little spaces and creating a picture of a horse, or a kitten or puppy. By High School, I had graduated to those really big posters that come in a big tube, like blueprints. No more little numbers, and they came with a big set of markers. You got to choose your own colors. I remember getting a big one of a jungle scene. Tigers and toucans, it took me forever to finish it.

When you realize that you've tumbled down the rabbit hole of chronic pain, numbers take on a whole new meaning. Pain has it's own language. Pain management people use a pain scale in which you're asked to rate your pain on a scale from 0-10. There is no way to even began to add up how many times I've been asked to do this. The first time I was asked that question, I didn't really know how to answer. Choose a number between one and ten that would tell the doctor just how bad I felt. It seemed like this was a really important answer I was being asked to give. Rank it too low, then I'm hiding how bad it really is, but give a number too high, maybe no one will believe I'm in that much pain. Irrational thinking? Maybe, but that is what goes through the mind of a chronic pain patient. For some silly reason, I always want to say, "somewhere between 6 and 7, or between 7 & 8. 6.5?, 7.5?" Those aren't the choices, but for some reason, I want to answer that way. Some nurses don't like it when you do that. They peer over their charts and say, "Well, which is it?" They don't want my fractions messing up their chart or something. Even after nearly 7 years of the dreaded chart, I still struggle with it. After all, it changes from minute to minute. It can be all over the number chart in a one hour period.
Sometimes the numbers have little faces above them.Happy face over the 0, then a progressively distressed face as the numbers go higher. I've gotten to the point that I sometimes hate those little faces. I'm tired of trying to put a number to what I feel. It's hard to communicate pain, and I know that this is just a tool to help health care folks understand what is going on with you. The numbers paint a picture of the pain. But still. Sometimes I just hate those charts.
Eleven. Eleven was the number that finally gave me a name for my pain. On the website, www.rsdhope.org , I found out that most people with RSD go to 6 doctors before they are diagnosed. My magic number was 11. Over six years, I saw 11 doctors of all kinds before my pain was named by a neurosurgeon. Reflex Sympathetic Dystrophy. It's also know as Chronic Regional Pain Syndrome. A very old term for the condition is causalgia.
I saw every kind of doctor imaginable in my journey to find some kind of diagnosis and relief for the burning pain in my legs and the stabbing pain I often felt in my back and legs. I saw surgeons, neurologists, physical medicine doctors called physiatrists, several different pain management doctors, acupuncturists, chiropractors, internists, all initally convinced they could help, then months later telling me they did not know what else to do for me. I had several tell me they felt that I was wasting my time and money by coming to back to them, sometimes suggesting yet another doctor, sometimes they told me not to come back and had no further direction to give me. Just keep taking drugs to try and control the pain. I saw some "out there" types of medical and naturalist people too. But that is another blog entry for another day.
But how good it was to see Dr. 11, who finally said, "this is RSD, sometimes called causalgia." A name, something to research, something to maybe find help for. But at least there is a name for it.
11 is a lot of doctors, but better than 20! I was also able to find online support groups, I can communicate with people who have it and truly understand. I found testimonials of others that I could show my family and say-"this is it exactly. This is how I feel." Other people with RSD really get it. they don't judge, or feel like they have to find something "positive" to say, like "it could be worse, you could have what so and so has." That's really never helpful. At all.
Numbers and a name for my pain. At times in the past 7 years, it has consumed me, depressed me, made me miserable, angry, frustrated.
But, it's also been the fire that has molded me into who I am now. God doesn't waste anything.

The journey I did not expect

6 years, 10 months, 26 days. That is how long it's been since I began my journey as a person living a life with chronic pain as my companion. It started humorously enough. A quick slip and a fall on the kitchen floor. I felt pretty stupid and embarrassed and was very glad to have been alone when it happened. No witnesses. Good.
Earlier in the day, I had been cleaning and used furniture polish on my kitchen table. As I sprayed & polished, some of it must have wafted down to the linoleum floor. Just enough that when my sock-feet hit it that evening, I did a arm waving windmill dance as I tried to keep from going down. It was like slipping on ice. I sat down hard, but felt unhurt except for my dignity.

I didn't give it another thought, really. Until a couple of weeks later. Three days after the slip on the floor, I started having this throbbing pain in my right hip. I'd never felt it before and was not sure what was going on, but thought it would go away quickly. It didn't. After about a week of dealing with the pain unsuccessfully, I finally went to my doctor. I didn't even connect the pain with the fall until after a couple of doctor visits, my doc asked me if I had fallen recently. I had totally forgotten about my kitchen slip and slide experience. As I said "No...", the image of my windmill dance replayed in my mind, changing the answer to "oh yeah...." After drugs, tests, therapy, injections, etc, etc, etc, .....I had back surgery on May 13, 2003 to fuse two of my vertebrae. All the bad stuff you've heard about back surgery- all true. When the core of your physical being gets assaulted, you are never the same again. I was always a active, love-the-outdoors kind of person. Back surgery left me weak and depressed. As I recovered, I got some strength back and the pain I had been having was gone. I was really hoping to put the whole bad time behind me and get on with life. It seemed like that would be the case. For awhile. About two months in, I was standing on my front porch one day and suddenly my legs felt like they were badly sunburned and ants were stinging them, at the same time. It was the strangest feeling. I couldn't shake it off, walk away from it, or otherwise escape it. I had no idea what was attacking my body or why it came on like that. I still remember that exact moment. It's a surreal experience. It was the moment I began the journey I did not expect.

6 years, 10 months and 26 days later, I'm still on the journey.