Before I go to bed tonight, I’ve got a few new things cropping up. Well, not new exactly. I spent the day with some pretty serious pain in my central and lower back. (It was a notch down from severe pain.) I’ve had a headache on and off all day, coinciding with the pressure in my chest. I was in the car for a while when my right hip and leg started to feel the sharp pain that is familiar from the year when I didn’t know what I had and spent a lot of time in bed.
It got me to thinking about a decision I made in 2007. I refuse to treat (as in mask or otherwise obscure without removing the source of) the symptoms. As you might imagine, that didn’t go over well with the various doctors I was seeing. They desperately wanted me to take pain killers. I did try the usual over-the-counter stuff early on, but it provided no relief. The other pain killers they wrote prescriptions for are all used as psychiatric drugs. I knew my mind was not running at full capacity from the pain and whatever was happening to my body, especially my nervous system, so I was more than reluctant to take anything that might handicap my thinking any further. I also got the impression that almost every doctor I saw that year would have been satisfied to relieve my pain and send me home without figuring out what was causing the partial paralysis in my legs, the unending digestive problems and the intense fatigue (sleeping 12-15 hours a day). For them it would have been enough to mask my leg, hip and back pain and blinding headaches. But it wasn’t enough for me. I had every intention of dancing again.
One doctor, a top neurologist at Colombia Medical Center (who has since relocated to be the director of a medical center elsewhere), told me that if I didn’t try the pain killers, he would refuse to see me again. So I tried one (I was supposed to work my way up to 2 pills 3 times a day) before bed. The next morning, I had double vision and a whole bottle of pills I would never touch again. I talked to one of his interns who told me I shouldn’t take any more of them (no kidding). When I saw the neurologist again, he basically ushered me out the door because he couldn’t figure out what was wrong, but offered to schedule another follow up visit so he could monitor my “progress” or, more accurately, my deterioration.
So I kept looking for people who treat the underlying causes of illness. I focused on treatments that would build my immune system and the rest of my depleted body until I found out that I had an infection, what it was, and how to fight it. I continued to shy away from all the treatments to ameliorate symptoms so that my liver and kidneys wouldn’t have to process anything that wasn’t absolutely necessary to healing.
I made some mistakes because of how strongly I stuck to that decision. I didn’t treat my blood pressure, which runs very low, until summer 2010. My doctor finally convinced me I was straining my heart, and incredible amounts of salt just didn’t do the trick. Let me tell you, I felt like a different person once my blood pressure stabilized at 90/60mmHg.
In all, though, I’m glad I didn’t get addicted to pain killers or sleep medication for two reasons. First, I know I can handle what is going on with my body. I don’t run for a pill to avoid feeling what is happening, even if it is unpleasant and prevents me from doing what I want to with my time. Second, I know what is going on with my body. I knew when symptoms shifted, changed, disappeared, reappeared, or when new ones showed up because I wasn’t numb. I lost a lot of time experiencing excruciating pain, time I’ll never get back. But I still think it beats being woozy, sleepy, unfocused or numb.
I can say this more certainly right now because I had a kidney stone in late December. The pain level was as bad as the worst of the Lyme pain, but it was in my abdomen which made things seem worse. Once I got a diagnosis in the hospital, I was ready to get hooked up to a narcotic (and something to make me stop vomiting). I understood that all I could do was wait. And honestly, the pain was intolerable once I knew what it was and felt no compunction about needing to feel my symptoms to be able to understand what was happening. Still, I hated loosing 3 days to narcotics because my mind couldn’t function, even on minimal doses of heavy pain killers. I quickly learned to hit the Advil as soon as the pain started increasing so I could avoid the heavy stuff.
I couldn’t have lived like that for 10 months while trying to navigate the medical system. So I don’t regret my decision not to treat the symptoms.
Meanwhile, as I deal with this Herx reaction and the ones to come, I’m more than happy to do things that support my detoxification process, which just so happen to reduce the symptoms a lot faster…
Categories: healing process, pharmaceutical treatments
Tags: kidney stones, lyme, pain, symptoms
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Coiling for Lyme 
Meah
Interesting about the low blood pressure taxing the heart. Never would have known that. It seems incredibly brave and grounded to choose excruciating pain over the alternative. I look forward to seeing you dance again when the marathon is over.