Wednesday, May 29, 2013

Decline and Death (Sorry for the delay will try to post on the Monday schedule from now on)

It has been three years and three months since I was diagnosed with sarcoidosis.  During that time there have been ups and downs but unfortunately the overall trend has been one of decline.

If anyone is honest with themselves things start to decline when you turn thirty whether you are ill with a rare disease or not.  My father passed away suddenly two days after my fortieth birthday.  He had certainly declined since he was thirty but he was still independent and able to take care of himself for the most part.  In fact he was on a road trip with a girlfriend when he died in a Best Western Bathtub.  Drowning certainly is a rough way to go but I am glad he never had to rely heavily on anyone for his daily needs.

I have two sisters and they have both have taken the death of my father hard.  I certainly was upset to hear of my fathers death but it did not destroy me in the way it has my sisters.  I was in the emergency room when I received the call from the girlfriend that was with my father when he died.  I will post another time about the specifics of why I was in the ER.

Something that I do wonder about is why I was not necessarily able to handle my fathers death better than my sisters but that I was able to keep up with the day to day of life.  I think that when someone close to you dies there is a shock that they will no longer be around and all the emotions that come with that but also you are forced to face your own mortality.

Before my father died I had already been forced to face my own mortality.  There are lots of way you can die from sarcoidosis but they are all maybe's.  It can effect this and it can effect that, blah blah blah. About 2 years ago I found out that I had pulmonary hypertension caused by sarcoidosis and all the sudden one of the maybe's became a reality.  Pulmonary hypertension is always fatal but initially I was able to avoid facing my own mortality.

Pulmonary hypertension when caused by sarcoidosis generally moves with the disease and although it is fatal I thought we could control the sarcoidosis to the point where I would live long enough to die from something else.  Last September when I was finally unable to work anymore I was no longer able to deny that despite the ups and downs that I was overall on the decline at least as far as my health goes.  Now it is plain to see all things being equal I will probably die from sarcoidosis and if things continue on at the present rate it will not be some abstract distant future but sooner than later.

We are all born to die and I am no longer ignoring that fact.  In the coming weeks I will begin Remicade which will literally be the last ditch effort to restore some quality and length to my life.  Regardless of how well or poorly the drugs work I will be aware that my new friend the end is never  far away.