“…it demands to be felt.” The Fault in Our Stars, by John Green. Fabulous book. Just don’t read it when you’re sitting in the hospital pharmacy on the floor below where kids are actually dying of cancer. Makes it a tad more depressing.
But I honestly don’t even know where to start when it comes to my own experience with chronic pain, which is any pain lasting more than three months. The intention of this blog is to raise awareness about such things, but I’m going to be honest and say my own experience is so overwhelming I don’t know what to say. I’ve been experiencing chronic pain for two years now, you’d think I’d have some commentary.
I tried turning to my journals, but that’s all there is. My writings are just full of me saying how much I hurt all the time. All. The. Time. I have 12 journals from the last 11 months. And that’s almost all they’re filled with. Pain. Of various kinds. Emotional pain. Mental pain. And, of course, more than enough physical pain to go around.
But this is meant to be about physical pain. So let’s begin with the clichés.
According to the National Institutes of Health’s National Center for Complementary and Integrative Health (NCCIH), nearly 50 million adults have significant chronic pain or severe pain. That’s a lot of pain. So I am glad to know that I am in good company. Ok, that’s boring. Let’s move away from the boring stuff.
My story with chronic pain actually goes back to 2002, when I sustained a medial meniscus tear in my left knee at a dance rehearsal. Let’s just say my brain and my body didn’t communicate, I prepped for a double turn, and my foot stayed planted while my body turned. SNAP. It burned a bit. But aside from a low level of chronic pain, I didn’t really know my knee was that injured until two years later when it started causing problems with my dancing. That injury ended whatever dance career I may have had. But to make a very long story short, I finally had surgery on the blasted thing in 2013 after being airlifted out of the Grand Canyon after hiking nearly 25 miles on a bum knee. Fun story to tell, not to live. Maybe I’ll tell the story someday on the blog. But after that, my knee was pretty much fixed! No more chronic pain!
Until 2014, when I was diagnosed with endometriosis in the spring of that year. Endometriosis is a disease in which tissue similar to, but not identical to, that which grows inside the uterus is found in other parts of the body. It is most commonly found in the pelvic cavity, but can also move into the abdominal cavity and sometimes even further. This growth of tissue can cause anywhere from no pain to extreme pain depending on where it is located in a woman’s body. For my full story on endometriosis, check out You have what in your where, Know Your Enemy, The Gold Standard, and A Sticky Subject.
Spoiler alert if you haven’t read those posts: I had surgery to fix me because the pain was debilitating and was turning me into a bedridden invalid. And it worked, thanks to the great people at the Center for Endometriosis Care. But, as related in A Sticky Subject, a common post-op complication from any kind of pelvic or abdominal surgery is scar tissue, otherwise known as adhesions in medical jargon. I had no problem with adhesions for awhile, but a few months after my excision surgery, a very familiar pain returned.
August 30, 2015: “Scar tissue. Can’t be prevented. Nothing really to do about it. I’ve done a little bit of looking for stretches that may help. My over-flexibility tends to act as a deterrent to those kinds of stretches…But I know this pain. This is an adhesion. It tugs and tears and pulls. It feels like my ovary and tube are being pulled toward my intestines, just like last time. And there’s nothing I can do. Pain meds on bad days (which for this, has become most days).”
December 31, 2015: “I guess the other main “bad thing” from this year is the continuing issue with endo…But even if there is no endo left (which I have faith there is not), I think it’s still just that scar tissue that’s causing me continual pain. My baseline is still a 3. That’s hard to deal with, since I’ve been otherwise healed for just about a year…Being in constant pain, no matter the level, is taxing.”
At the time of those entries in my personal journals, my pain was regularly spiking up to 6-7/10 on what I called my “bad days”. And as I said, that gets to be very taxing on the body after a constant onslaught for months on end. However, what I thought were adhesions actually ended up being something entirely different, and actually much more dangerous. Check it out at The Day Before the Day Of and Always A Zebra.
But my journey down the road of chronic pain was about to take a hard left. Starting in January 2016, I began to have migraines on a horrifically regular basis, with a whopping 20 in January, 12 in February, and 5 in March. Anyone who has ever had a true migraine can tell you they are among the worst assaults of pain your body can ever experience. In fact, the World Health Organization (WHO) has categorized migraines as having the same level of disability as dementia, quadriplegia and acute psychosis. WHO also classified chronic migraine as the seventh most disabling disease in the world, more disabling than blindness, paraplegia angina, or rheumatoid arthritis.
But why why only 5 migraines in March? They stopped? That’s good, right? Well, yes and no. It was in March that the source of my headaches was discovered: a benign brain tumor called a prolactinoma.
As soon as I started on medication to treat the prolactinoma, my headaches changed from migrainous to daily severe, tension-type headaches, which is also a known side effect of the medication. Nothing made the pain go away. Although I was grateful I was no longer having migraines, these headaches were nearly as debilitating and even more constant.
April 14, 2016: “I’m just so sick of this. And I’m getting tired so I’m rambling, but how many doctors do I need to see just to feel better…I’m just frustrated. I want this all to just go away. I don’t want to be sick anymore. I want to be healthy and in control of my life and right now I can’t even manage that. What am I supposed to do?…I just can’t handle my life anymore. I just want it to be over.”
After trying both medications that can be used to treat the prolactinoma and having even more severe side effects, my endocrinologist came to the conclusion that the side effects were severe enough that I should stop the medication. So what does this mean? Brain surgery. Scheduled for September 8th. For more on my brain tumor journey, you can check it out at Zero to Migraine and Hell in my Head.
So what is my point in all of this? If you’ve read any of my other posts, you know all this stuff that I’ve been through. I’m in a lot of pain on a regular basis. It sucks.
My point is that chronic pain is often very hidden. Some individuals with chronic pain require use of assistive devices in order to be mobile, or need to utilize handicapped parking spaces when going out. But for a great number of us with chronic pain, our pain is much more subtle. You wouldn’t know by looking at me that I have chronic pelvic pain and chronic headaches. Or that I require a pretty intense regimen of pain medications just to function.
Those of us with chronic pain have to feel the pain our bodies put us through because that is what our bodies demand of us just to be alive. We haven’t chosen to live this way. For many of us, this is as good as it’s going to get.
But for me, I hope that now that my pelvic pain is (hopefully) solved and I’ll be having brain surgery in a month and a half to take care of the head pain, I’ll soon be able to say I used to have chronic pain. And that is a day I look forward to immensely.