When I started this particular blog, it was with the intention that I would write with a primary goal of entertaining my readers, either through humorous anecdotes or scathing political or social commentary or what have you. And that, philosophically, remains my intention. However, content has been a bit haphazard of late, certainly not particularly thoughtful, and that’s because I’ve been hurting, and it’s taking up more of my mental and physical energy than it should. I find myself exhausted most evenings, just wanting to veg in front of the TV after the necessities of being an employed married homeowner and mother of three dogs have been tended to. That just doesn’t make for someone who’s prepared to write interesting or entertaining stuff. So I’m just going to get real here, because THIS is what’s on my mind, most all of the time, lately.
It will not be news to most of you that I have been suffering with chronic back and hip pain for years now. In fact, I cannot recall a single pain-free day in the last five years, at least, and I had more than a few bad days before that, too. My days vary between “debilitating” and “tolerable” pain, at best. Lately, there have been fewer tolerable days, and enough debilitating days that I have been forced to try to get medical help again.
I say “forced” because it took a lot, mentally, for me to pick up the phone and start again because my experiences with conventional medicine, especially since I moved to Arizona, have been uniformly useless in terms of addressing my pain. Mostly all I’ve gotten out of it is a lot of medical bills, a lot of early mornings, and a lot of sick and vacation time I don’t have wasted on treatments that don’t work, administered by medical professionals who refuse to listen to me, or give credence to my own lived experience in my own body as I describe it.
The only places I’ve gotten even partial assistance is from weekly massage given by a loving, generous, and skilled friend, and my chiropractor (the only one of 3 I’ve used that actually listens to me), but even those have proven only to be tools to keep me in the “tolerable pain” range, at best. People suggest things to me all the time, things that worked for them, hardly believing me when I say I’ve tried everything, to no avail. I really have tried everything short of faith healing and Reiki, and I haven’t entirely dismissed the latter as a possibility. My chiropractor says his instructors at school always reminded them to “Look for horses,” that simple causes are the most common causes, but sometimes you do get a zebra, and I seem to be one of them. But everyone still keeps trying to treat me as a horse.
As miserable as I’ve been, and as much as this pain is fucking up my ability to actually live my life, on multiple levels and in various areas, I didn’t want to get on the medical merry-go-round again only to have to explain myself to a bunch of people who wouldn’t listen, just like the ones in the past didn’t, or dare to hope even for a second, only to end up no better in the end. I just wasn’t prepared to set myself up for that kind of disappointment again. And yet, the pain has taken over my life to a great extent; it puts the kibosh on all kinds of plans, and is consistently random enough that I never know when the worst is going to strike. So there’s a emotional component as well that compounds the physical.
Chronic pain leads to depression, and a certain kind of thinking that is dangerous and scary to people who live around the person who has the chronic pain (and don’t have it themselves, and therefore don’t get it), if you dare to express it. Mostly you don’t, because you don’t want to scare people. But when your body is your constant and unyielding enemy, taking up far too much of your thoughts and preventing you from doing the things in life that you need to do, or the ones that give you pleasure, it is but a short step to fantasize about being without one. And then you have to reassure your loved ones that you’re not going to do anything rash, even as you realize that you might be looking at a life sentence: 50 years or more of misery, without possibility of parole. Scott feels bad for me. My parents feel bad for me. My friends feel bad for me. I feel bad for me. I plain just feel bad. And nobody wants a solution to this more than I do, but so far, it’s been entirely elusive, and my faith in its existence is nigh on nonexistent at this point.
However, as giving up is not an option, I had no choice but to pick up the phone, and the bullshit I feared started almost immediately. I had decided, based on some self-tracking of my pain I’d been doing, to skip right over the primary care physician I consulted 2 years ago for this exact same crap, and go right to a specialist. So I got a recommendation, and called, only to be told they couldn’t take me without a referral from my PCP. When I explained that my insurance didn’t require this, that I could go straight to a specialist, the gal on the phone explained that it was the doctor’s policy. Not only did they want a referral, they wanted labs already done and a diagnosis. My protestation that that’s what I wanted the specialist to give me was shot down immediately.
So I called my PCP, and made an appointment, only to have the clerk call back within 10 minutes to tell me they canceled my appointment because I was an “inactive patient.” Evidently, if you don’t make sure you get in once a year, they relegate your file to some dungeon somewhere, and require the doctor’s express permission to reactivate you. After my squawking several complaints about the ridiculousness of this, he said he’d see what he could do. He called back a few minutes later saying that he did actually find my file (which makes me wonder if he even looked the first time), and I could go ahead with the appointment.
The appointment with the PCP involved me giving him basically the same spiel I did in June 2009, plus two years, and him ordering some blood tests for rheumatoid arthritis, which I’m virtually certain I don’t have, and thyroid, which I requested and he doubted, but added to the order to appease me. His office called back a couple days later, leaving a message saying my labs were “fine.” Whatever that means. No instructions as to what the next step was, or how we would proceed in dealing with my pain. Just “fine,” and I was on my own yet again.
A week later, I received a message from the doctor himself saying that one last lab had come in late, and he wanted me to call him to talk about it. Which instantly made me nervous, since when everything was “fine,” it was the desk staff that called. Now the doc himself needs to talk to me and can’t say why?
So I call him back the next day, and leave a message, because doctors don’t come to the phone when you call. He doesn’t call back. So I call back the next day and explain to the front desk that his original message made me nervous, and the delay wasn’t helping.
He called back within two hours, to inform me that he wanted to refer me to a rheumatologist, a doctor that specializes in musculoskeletal issues and auto-immune diseases. Great, I thought; that sounds just like the doctor for me. I was told his office would call me back the next day to set it up.
I wish I could say I was surprised. I was not. I totally expected it; hence my unwillingness to even go down this road again. At every roadblock, I’ve said to Scott, “See? I told you this is how it would be. Didn’t I tell you?” He didn’t really understand my reluctance to start up with all this again, but now he sympathetically allows that I was absolutely right.
In the meantime, I had gone rogue and contacted the local AZ Pain Center on my own, and got my records sent there. They couldn’t schedule me without talking to my insurance carrier first. I’ve been annoyed for years that no one in a doctor’s office will even talk to you without asking about your insurance first, before your name, before asking what’s wrong with you. If you don’t have insurance, they don’t want to know you. I’m already exhausted by the rigmarole, and I HAVE insurance; dog help folks who don’t, because the medical industry sure won’t.
But to my amazement, they called back within hours and scheduled me for a consultation for their services, which involves injections of low-dose steroids, anti-inflammatory drugs, and pain relief directly into the spine and affected muscles. I saw them Thursday morning, and have an appointment to start treatments on Tuesday.
Meanwhile, back at the PCP, I called them back Monday, since I hadn’t heard from them about my referral. She said she faxed the request to the rheumatologist, and it might take some time for them to get back to me. But when she checked, she found the request in the “to be faxed” pile; it hadn’t even left their office yet. Because they’re not in pain; what’s the rush? She assured me it would happen, though.
Wednesday, I finally heard from the rheumatologist’s office. The clerk cheerfully informed me that the next available appointment was for October 14th. I was incredulous. “You’re kidding me,” I said. “3 months I have to wait?” She said, “Well, it’s actually only two and a half.”
Thank you. Thank you so much for that bit of perspective. I feel so much better about it now. Because you’re not in pain; what’s the rush?
See? I told you.
At this point, I’ve been at it two weeks, and have yet to receive any treatment beyond the chiropractic I was going to have anyway. Amazingly, my back doesn’t feel much better. As a matter of fact, in some ways, it’s worse. I missed work on Friday because I couldn’t tolerate sitting all day, despite the fact that I have no fewer than three chairs in my cubicle at work that I switch between all day long in a futile effort to try to get comfortable. Lying down for any amount of time results in a catastrophic stiffness in my lower back (a newish development) that makes it hard to even get out of bed after watching Jon Stewart and Stephen Colbert in sequence, let alone in the morning. I have to basically work myself up to it, get to a decision point, and then power through it with the help of my (fortunately) strong arms, and wait for a little movement and a hot shower to loosen it up enough to be functional.
There are really no words for how beyond tired I am of this, and so I find myself staring into space in mute frustration at the whole deal. I can’t believe it’s been so recalcitrant. I can’t believe that medical professionals are so unhelpful. I can’t believe the medical system is so broken, and that people have to navigate this morass while they’re already unwell. I can’t believe that there’s any hope, and yet I have to. I have to. But I’m so damn tired and demoralized.