Yesterday morning was the third and final session in this series of prolotherapy treatments for my neck (cervical facet joints). Due to Ehlers-Danlos Syndrome (Type III), the joints in and between vertebrae in my neck – and probably along all of my spinal column – are hypermobile, which can result in muscle spasms anywhere from the back of my skull, along the sides of my neck, down to my shoulders, and across my upper back. The idea behind prolotherapy is that the irritants injected into the joints will stimulate the body’s own healing process, which makes the ligaments tighter, so that the joints are less mobile… hopefully to the point where they are merely mobile rather than hypermobile.
I have to admit, though, that this first series of prolo doesn’t seem to have changed a whole lot yet. If I miss a dose of my muscle relaxants (skelaxin during the day and flexeril at night), then I pay for it for the rest of the day and all of the next. The prolo treatments seem to give me a couple days of increased stiffness around my neck and shoulders, followed by a couple of pretty good days… and then I return to the same old spasms and pain. We’re hoping that this final treatment will result in some relief from the pain, because my body needs a break from being held in a state of constant inflammation for the last seven weeks. In the meantime, we’ll have to decide which joints to go after next, and I’ll have to think about having to shell out $550 per treatment. Right now, I’ll admit that the $1,650 I’ve spent this summer for the privilege of having all those needles stuck into the back of my neck isn’t seeming to be worth it, but I’m trying to keep my mind and heart open.
There are some aspects of chronic pain that I’d found myself unprepared for. It is hard to describe the toll that it takes on you to never find relief, to not remember what it felt like to be free of pain, to wonder what it would be like to have a single day of respite and fun without having to worry about paying the price for it later. Everything I undertake has a price, and that cost comes in pain, in enforced rest, in having to take additional, stronger meds for the breakthrough pain, in losing work, in losing sleep. If I watch a movie at night and go to bed late, I hurt more the next morning. If I mow the lawn, I hurt more the next day. If I take a plane trip to a week of meetings with my coworkers, I hurt more while I’m there, and I’m miserable when I get home. There have been several times in the last few days when I’ve just wanted to cry, not so much from the pain itself, but from the frustration and drain of its persistency and constancy.
Back ten years ago, when I was struggling with severe depression, I asked over and over, God, why me? A therapist turned the question around on me, in a way that was powerful even though I resented it: Why not you? He had a point. Everyone has a struggle, everyone has some form of pain or suffering. One person’s may be rheumatoid arthritis; another may struggle with alcoholism; another lost her legs in a car accident; mine, at the time, was depression. Today, mine is EDS, which is invisible just like depression is, but still has measurable effects on me. I guess it is a measure of my growth in the last ten years, but I have not found myself asking why me? this time. I have asked God simply why?, but I don’t know whether any human can really know or understand the answer to this question.
Right now, I’m experiencing pain in every part of my body. Did you know that your toes have knuckles, too? Or that the knuckle joints at the base of your fingers could hurt? How on earth do you rest your hip and sacro-iliac joints, so that they are completely neutral? It amazes me, sometimes, how many different places I can feel the pain. I know that both of my elbows have subluxed, as well as both wrists, both shoulders, and something in the hip/SI region on both sides as well. My ankles and knees are aching, and may be out of place as well. Thankfully, my doctor wrote an order yesterday for me to see my physical therapist again, a couple times a month, so that he can put all my joints back into place on a regular basis. We are both hoping that this will keep the worst of the pain down and help us avoid complications and aggravations from a joint being subluxed for a long time.
In addition to icing my neck and back, I’m wearing my wrist splints again and thinking about ordering ring splints for my fingers. I wish I had more of the long-lasting cold packs – I have two that the surgical center gave me after my rotator cuff repair last summer, and they stay cold for about eight hours each. Of course, the sleeve for them is designed for the shoulder, and doesn’t work quite as well for other body parts, in terms of being able to attach the ice pack and leave it alone for a couple hours without having to adjust it. But I’ll look for some other solutions, and see what I can find.
In the meantime, I would like to find someone to help me with some of the cognitive and emotional aspects of the chronic pain, to help me find techniques to settle my thoughts and feelings when I become frustrated or even despondent. I have a therapist I’ve worked with before, and I’ll probably call him first, but I don’t know how much he knows about the cognitive and emotional and spiritual aspects of pain. Of course, this is just one more time commitment, one more thing to take me away from work and home… and one more monetary cost from this disorder, along with the prescriptions, the copayments, the prolotherapy that is not covered by insurance, the ice packs, the splints and wraps, the ergonomic devices.
Ah well. I’m sore, and I’m sleepy now from my meds, so I need to take a nap. Yes, a nap, barely two and a half hours after getting up. But that’s how this goes sometimes.
Today, I am grateful for ice packs and pain relievers, and the support of those who care for me. Be at peace, my friends.