Joe's Health Saga (Short Version)
For over a decade now, I have been dealing with a very unusual neurological condition. The doctors believe that it is something genetic, that has been with me since birth, but was effectively dormant for the first 33 years of my life. I could have easily lived a long, full life without ever experiencing a symptom or it could have started up years ago in my youth. The overall experience amounts to constant, intense pain that I feel in my chest that worsens whenever I swallow anything—solid or liquid. Although I’ve never actually experienced this, in my brain’s effort to make sense of the pain signals it receives from my malfunctioning nerves, I imagine this is like being impaled by something like a railroad spike or pick axe. When I swallow, for an instant, it feels like razor blades or fire.
Still, I believe that I am fortunate. The vast majority of those with Complex Regional Pain Syndrome (CRPS) are unable to work at all. The similarities between CRPS and my condition are the symptoms of both allodynia (touch sensation registering as pain), and hyperalgesia (exaggerated pain well beyond normal for the associated stimulus). The main differences between CRPS and my condition is the location (mine in my chest versus in a hand or foot) and duration (mine is constant and has never eased up versus occasional remission and asymptomatic periods). I am fortunate to have worked with some of the top doctors in the nation, and tried a variety of treatments leading to a particular combination of treatments that not only reduce my pain by more than 50%, but allows me to serve as I do, teaching students and helping them to prepare for life beyond high school. Although my treatment does not work for everyone with my condition, I am grateful for the benefit I get from both an implanted neurostimulator partially interrupting the transmission of pain signals to my brain and a specialized pain medication.
Throughout my health saga, there were times when I thought I would have to give up my career, but I have been able to make it through despite the physical difficulties and the exorbitant expense of the medication I now take. This medication, called Buprenorphine, and is a bit of a wonder drug. This is a very simplified explanation, but most medications in the family of pain relievers work in two ways: the block the nerve receptors that respond to pain, and they stimulate the nerve receptors that respond to pleasure. The consequences of using medication like that over long periods of time is that you can build up a tolerance that makes the medication less and less effective, and as the pain signals subside, the stimulation of the pleasure receptors can lead to addiction, impaired judgment, and even altered personalities. Buprenorphine, although thirty times more powerful than morphine, only works by blocking the pain receptors and does not affect the pleasure receptors; it dulls my pain without compromising my ability to solve physics and chemistry problems with my students.
Despite these health issues, I am grateful for the opportunity to continue serving as I do. To be honest, there is something therapeutic about continually putting the needs of others—in this case, my students—ahead of my own. Although it is taxing, I dread even more the prospect of some doctor or policy maker in government arbitrarily deciding they are not willing to continue my treatment, and then having to someday live that life in bed and face the relentless agony that I am always feeling. Thank you for taking the time to learn about me and understand a bit of the intrigue.
The “long version” of my story includes the detailed account of how it all started and progressed to this point. Also, if you are interested or curious, subscribe to my Facebook group “Rise Above Relentless Agony” (using the link at the top of this page) where all future updates will be posted.