Some folks have been kind enough to write in asking about the status of my health. I suppose it’s time for an honest update. Part of me wants to keep this entirely to myself, but if I am given the chance to recover and complete my PhD, I will spend my life as an active advocate/helper for others who face similar challenges. So perhaps it is best that I speak up.
In addition to the emergency abdominal surgery that nearly “closed my peephole” (Kurt Vonnegut’s eloquent euphemism for death), and another serious abdominal surgery looming in the future, I’m stuck with an outrageously severe case of Central Pain Syndrome.
Central Pain Syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types at once: burning, freezing, shocking, aching, crushing, spasticity. It has been characterized as the worst pain known to man. It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord. (Source)
There is often severe, unremitting nausea causing constant vomiting. The pain can bring on hyperventilation. Blood pressure can rise due to the pain…Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes. (Source)
Some people with CPS only have certain limbs affected. Mine is all encompassing, and extends throughout my entire body. Consequently, my hands hurt too much to type (or be of any use, really…even to hold books, which is the worst!), my jaw hurts too much to speak or chew, my tailbone hurts too much to sit, etc., etc., and I spend my days writhing around on heating pads and ice packs looking for some less agonizing position, failing to find one. I have tried well over 100 medications, supplements and nearly every complementary therapy out there.
The pain is comparable to the final stages of metastatic cancer…yet as a condition is far less understood, acknowledged and respected. I cannot blame physicians for being intimidated by a beast of such magnitude! Our search for treatment continues…
If things go as planned I will finally get to check into a hospital for inpatient pain treatment in the near future. Please keep your fingers crossed for that. In the meantime, I will have to keep my commentary at a minimum.
I truly appreciate all of the people who have stuck with this blog, made comments, or sent messages. I am NOT giving up on taming my central nervous system and rejoining the human race. There are truly wondrous stories trapped in my head, waiting for expression! I have immense love and support, for which no words adequately convey my gratitude…and I have incalculable love left to give. I’ve tried very hard to keep this blog alive as it is one of my few tethers to the outside world, and I will do my best to continue.
If you would like to guest blog, please contact me and let me know.
All the best,