What happens when Husband and Wife becomes Caregiver and Patient? "During a simple medical procedure, a surgeon damaged a nerve, and our lives as we knew it would disappear. It went undetected, undiagnosed, and under-treated for over a year, and it progressed into an incurable nerve disorder called Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy (CRPS/RSD.) About a year ago, Shannon's joints began self-dislocating. A connective tissue disorder called Ehler Danlos Syndrome introduced itself. Shannon needs a lot of help sometimes. These are my experiences as her well spouse and caregiver." "A Well Spouse Love Story" is a true story about a woman's life taken over by rare chronic illnesses, as told by her husband and caregiver for life."In the first year we saw easily dozens of doctors. Nobody knew what this was, so there was no clear consensus on what to do. You can't fix what you can't identify. Or, if this is some kind of rare illness, it needs to be treated by a specialist, not in the ER. See your primary care physician and get a referral. We did. Many times.
Some were more compassionate than others, acknowledging there was something there, but beyond their scope. On several occasions, such a doctor would admit her so a specialist or two could have a look. This would lead to a few days or more in the hospital, spinning the prize wheel for new tests of varying invasiveness and discomfort, ultimately turning up nothing. “What do you do when doctors can't find the problem? What do you do when things get worse? What do you tell the kids?
This is the true story of a 13-year journey that may still be somewhere around the beginning...
