Over the last three years of having more intense chronic pain than ever before, I have learned that pain comes in waves. I have good days and bad days. And then there are really good days and really bad days.
Not only does the pain come in waves, but my ability to deal with it comes in waves. There are times when I handle my pain with grace and maturity. There are times when I think pain is just plain stupid and I want to be done now.
The one thing that comes in giant ebbs and giant flows is how much I can handle trying to figure out what is wrong with me.
If you haven’t heard my story, the short version is that I’ve had pain in my legs, off and on, my whole life. When I was little it was attributed to growing pains. I topped out at a mighty 5 feet 2 inches, so we realized it wasn’t growing pains. The pain hit me badly once or twice a month and sent us to doctors, who were mystified. It got worse in college, but mostly likely because I wasn’t doing my body any favors by taking a fairly intense music degree that required me to be playing my flute between 4 and 6 hours a day. (If you think that’s not a big deal, try standing with your arms out to your side and see how long it takes for you to start shaking.) It again got worse after I had chemotherapy. Getting poisoned probably doesn’t help very much except the cancer part. Having my son also saw a spike in the pain levels. And for the grand finale, we moved to high altitude (6,500 feet if you are wondering) and my body has finally had it and given up on me being nice to it ever again.
The problem is we don’t know what is wrong with me. After ruling out all kinds of dread diseases, my pain specialist and I, suspecting that this is a neurological disorder of some kind, started to just manage the pain with a neurological drug and narcotics when needed.
Obviously, the better I take care of myself, the better I feel. I run, bike, and do the non-creepy kind of yoga, drink a ton of water, manage my weight very carefully, take a bunch of vitamins, and on, and on.
Going back to the ebb and flow of pain management, after we ruled out a bunch of stuff, but didn’t find the answer, I got tired and discouraged. I really expected a diagnosis and was disappointed in the continuing mystery. I got to the point where I’d just had it for a while. I didn’t want to spend hours every week in doctors appointments and getting needles rammed in increasingly not fun places. I have a life, a home, a son, a husband, two crazy dogs, and a very annoying fish, all of who deserve a woman who is not dumping them to chase after a diagnosis that may never happen.
However, every once in a while, I have the energy to try one more thing. Try one more doctor. Try one more clinic. Try one more fresh perspective on my bizarre and mysterious case.
Two weeks ago, I had one of those energy spikes and the time and ability to spend the hours hanging around doctors offices and wondering what exactly that shade of green wall paint is called. I saw a sports medicine doctor who was referred to me by my highly adored general practitioner. She saw a few holes in my test regimen and, to my amazement, we both realized I’ve never had an MRI done on my lower back. You would think with the nerves being the possible culprits, we would have checked those suckers out before now.
I don’t care about why we got delayed on that particular test, I’m just glad I’m going to get it done. This Tuesday, I get to go to the imaging center at 6:30 in the morning, get a needle rammed up my arm, and get an MRI done, with test results being read and given to me on Wednesday.
You know how most people are terrified that a test is going to find something wrong with them? Right now, I’m the opposite. I am really scared that this test is going to show perfect, happy little nerve endings that are doing exactly what they are supposed to be doing.
I guess I don’t really WANT to see nerves all crumpled up and angry. I just want to find the answer.
For the last year, I’ve been pretty zen and peaceful about not having a diagnosis, but finding a way to manage the pain. For the last week, I’ve been internally shouting, “Screw zen. I want to know why my body is a mess.” I was pretty shocked to discover how badly I want an answer.
I’m equally shocked to realize how badly I’m scared they won’t find the answer.
I think that since I believed an answer wasn’t out there, I had contented myself with pain management, with taking as good care of myself as is possible, with admitting when the pain is starting to mess with my head and taking the appropriate measures for that. I think I learned to live without hope.
Maybe the fear of not having an answer is really just the beginning of a new wave of hope.
Do I have the energy and mental capacity for hope? I have no idea. But, I think I’d like to try it for a while.