Sunday, October 27, 2013

Refractory: stubbornly disobedient

Refractory defined as:

adjective
1.
hard or impossible to manage; stubbornly disobedient: a refractory child.
2.
resisting ordinary methods of treatment.
3.
difficult to fuse, reduce, or work, as an ore or metal.
noun
4.
a material having the ability to retain its physical shape and chemical identity when subjected to high temperatures.

I have refractory sarcoidosis.  During the past three years I have tried many things to bend the stubbornly disobedient child called sarcoidosis to my will.  First thing I tried was simply my will in the form of denial.  The first two months after I was diagnosed I spent limping around and wheezing.  At the end of the two months I literally could not walk and getting out of chair would cause me to be out of breath.  Denial had failed, the disobedient child sarcoidosis had won the battle of wills.

Miracles, I believe in them.  I believe in big miracles like those in the bible, I am talking the old testament ones like the Red Sea being parted, burning bushes the whole nine yards.  I also believe in the small miracles that happen every day that push me along, the smile my wife has despite everything and lets not forget funeral potatoes.  There are miracles all around and I work hard to find one everyday.  To that end I have asked and I wait for a miracle.  Many have asked on my behalf as well.  I have had candles lit,  many voices have lifted many prayers to heaven to ask for a miracle on my behalf, and many have blessed me with power of their faith.  As of today I still wait for the Father to send me an answer. In His infinite wisdom, beauty and goodness he has chosen to leave the stubborn disobedient child sarcoidosis to run its course whatever that may be.  I have no doubt that everything happens for the greater good.

Last is the science of men.  I have always loved science.  For the majority of my life the scientific method served as my ten commandments.  I take that back, I am not sure if that metaphor works.  Maybe the universal constants were my ten commandments, I think I am digressing at this point but you get the idea.  Science has failed as well.  I have come to find out that science fails most rare diseases.  Sarcoidosis was first recognized over one hundred years ago and the cause is still unknown and there have been no drugs developed to treat it.  All the drugs I take are for other diseases that they have tried in the hope that they might work for sarcoidosis as well.  In my case all of the drugs currently used to try and treat sarcoidosis have failed.  Science has failed to find the secrets of the disobedient child sarcoidosis keeps, admittedly the full force of science has not been brought to bear.

As I sit here this Sunday night finishing this blog post it has been a rough week and I have learned what the word refractory means.  It means my body continues to be less and less my own.  The revolution continues and I just wish I knew what the demands of the refractory child sarcoidosis were.  If I knew maybe we could come to an accommodation.  In the end I still battle,the odds don't look good but I still battle.