Tuesday, May 21, 2019

Sarcoidosis and the Worth of Life

The past couple of weeks have been brutal. I am a couple weeks past due for my infusion because of a paperwork screwup somewhere and my body is in full rebellion. At this point in my life, I sometimes wonder about the value in prolonging the life of someone with a chronic illness. Seriously.

I once got to see a bill for my infusions and it scared the crap out of me. The numbers were just crazy. And I always feel bad about the weight my illness puts on the "system". What is life worth, really? And what is the balance? If you think about what you mean to the world - to society - and try to weight it against what it costs to maintain your life...

In a week, I have two or three great days of health. The rest of the time I am depleted by one of my medicines. Every eight weeks, I get an infusion and feel amazing for about three weeks. Even my weekly med doesn't bring me as far down as normal. Right now I'm feeling worn out from the one thing I managed to do today - walk over to the market for things to make tea and a snack. I had to rest for a couple of hours before I made the tea. All I've done with the rest of my day is lay down and try to fight the heavier-than-usual fatigue and make phone calls about the screwed up paperwork. So I am just questioning a lot of things.

I'm not a mother and I no longer am responsible for children. I'm not a wife or life partner. My contribution to society is fairly limited. So what is the value of life?

Today has just been really tough. I'm sitting on top of all my feelings wearing this crown of self-doubt and trying to talk to God about it all. Sometimes, though, the higher I sit on my mountain of feelings, the further I feel from Him.

What is the value of life? That's what I'm going to be thinking about when I lay back down. And I am going to have to lay back down because just sitting up long enough to post this has worn me out again.

I really hate this fucking sarcoidosis. I hate the way it makes me feel and I hate the way it makes me think - when I can think. I hate how it has come into my life and just bulldozed over everything that makes me sure of my value.