Monday, July 15, 2013

Things can always change quickly for anyone, but I choose to ignore that.

I have gotten worse and it has been quicker than I thought possible or have ever experienced.  I am the sickest I have ever been with sarcoidosis.  Last week the pain had gotten extreme and I was unable to get enough oxygen even when I was just sitting in a chair.  Your oxygen saturation should at least 88% or you should be on supplemental oxygen.  When sitting mine was 84% and would go down to 71% on just a trip from my chair in the living room to the bathroom.  Having to have oxygen on 24/7 just to survive sucks, I will probably end up there at some point but I will admit it was alarming how quickly I went from being somewhat on the road to recovery and then unable to walk without great difficulty and unable to breath without assistance.  We have added back in my favorite drug prednisone in large doses.  The large doses of prednisone has helped with the pain and the breathing but unfortunately it has not been completely helpful.  I do not wish to alarm anyone or get up on my cross so to speak but unfortunately my condition seems to have become unstable and potentially able to quickly decline.

The point of all of this is twofold.  One I would like to keep my Internet family in the loop and two I may die more suddenly than even I thought possible.  If I do die suddenly I would like all my amigos out there with sarcoidosis to remember that 19 out of every 20 people with sarcoidosis will die from something else.  Just because I shuffle off this mortal coil, that's right I went there, does not mean that you should give up and more importantly you should get as much joy from each day and the people that are presented to you in that day as you can.