CRPS or RDS Part Two

Six weeks into my personal IV treatment and shunt was removed. One week later the crew and I left Newport, RI bound for Seattle, WA via the Arctic. My fingers and some toes were crossed that the toe issue was behind me.

It wasn’t.

During the next five months the levels of pain that I experienced in that toe and now ankle were second to none.  Twenty four hours a day it felt as though someone with a very blunt 1950s style “church key” can-opener was trying to cut down to my bone from the tip of my little toe up to my ankle.  The pain was nonstop, at times worse than others and it was then that I started being unable to sleep on my left side for any contact with my left foot and my sleeping bag was torturous.

On November 6th, after five very long, harrowing and at times almost deadly months, we arrived in Seattle, WA.  We became the first production power boat in history to transit the fabled Norwest Passage.  While the tremendous joy and sense of great accomplishment filled me, the pain from my foot was there at every step to strip me of any comfort or ease which I should have had.  By this time, the searing and burning pain was so intense that it was no longer simple affecting me physically.  It was starting to take a tremendous toll on my mental and emotional outlook.  To date, no doctor had been able to stop the onslaught of crippling pain and my outlook on life was dropping quickly.  Simply put, the pain ruled my life and was now starting to compromise my mental stability.  The only comparison I have for CRPS is to try and imagine living with a person who shrieks brutal assaults in your ear 24/7… and there is simply no getting rid of this person.

That spring I simply couldn’t take the torture anymore; my sleep had been compromised to no end, my personal relationships suffered and I starred a slow slide into isolation.  Pain killers no longer helped.  I stared to get request for presentations and talks on the trip through the Passage and tried to meet these as best I could.  It’s no exaggeration to say I look back at these talks through a murky cloud of pain and discomfort.  By that time, it hurt to smile.

In April, I found myself sitting in front of one of the top neurologist in one of Boston’s leading hospitals.  I’d been a patient here before and the level of care and knowledge I found was as many other from around the world had also received.  I was in front of the best who worked for the best.  After several more tests, this doctor told me that the toe nerve had been “compromised” and it was his opinion that a section of it had to be removed, six inches to be precise.  I agreed.  Anything to stop the pain.  As for seeking a second opinion, I felt that this doctor was in all actuality my third or even forth opinion. The surgery was preformed, and as I was warned, I came out of it with not only the nerve gone (which had excessive amounts of scar tissue on it) but so was the feeling in a third of my foot.  Eight weeks later the pain was back.  In fact, it had never left and now it was off the charts extended up and above my ankle.  I went back to the neurosurgeon.  He strongly recommend that a further section of nerve be removed.  Once again, if it meant a break from the daily and hourly physical hell I was in, I agreed.  By this point, mentally I slid very far down into a dark, dank and oppressive rabbit hole. I had never know the likes of a place like this.  Eight weeks later this invisible monster or pain was back with a vengeance.  Normal daily life was a constant emotional challenge and a good night’s sleep was something of which I had vague memories.  While I never quite got to a level where I felt that ending my life would end the torture, I do have to say, in all honesty, that many times I truly understood why people sought this route of finality.  I couldn’t walk, I couldn’t expose my foot to a bath or shower, the pain was a constant.  Any joy or hope that entered into my life was immediately filtered by the screeching pain.  If I didn’t have a day with at least one good crying jag of total frustration I considered it a good day.  Thirty-three years prior to that summer, I had stopped drinking and using drugs.  At no time during this hell was I tempted to start using again but will not take any credit for that.  I’m a very firm believer in a guiding entity which has served me time and again in my life.  Here too He/She supported me and listened to my entries of “Please, just get me through this day.”

Check back soon for the final installment of this blog…