April 24, 2013


I'm caught between many rocks and hard places.  My health is not good.  It's not going to get better before transplant.  I'm still working, but kind of need to stop.  And yet the idea of going on disability dismays me, not the least of which is because I may be gambling with my health insurance. What I've got now is a good deal and I can rely on it - what if going on Medicare jeapordizes it?  And yet I know there'll be time after transplant where I certainly can't work and will need some income, even if just enough to cover the mortgage. 

I need to refinance.  I need to call Social Security Administration.  I need to make myself do these things before it's too late.  Not that horrible consequences will result, just that I may not have the financial assistance when I need it.  Actually, that could be pretty horrible, huh?

And, no, I don't want to have to depend on my family to be able to pay my bills.  I'm not an invalid for christsake!

Today's appointment with Dr DiMango was not the greatest.  I had a hard time describing how bad I felt all last week while I had both a chest infection and a head cold.  It was as if they multiply each other, not just add together.  I'm over the cold now, but the chest infection lingers and the WORK of coughing to try to move phlegm out is exhausting me.  I'm getting short tempered with the people around me. 

My FEV1 today was 18%.  My weight is up, though it is just fat.  (Although I'm sure my doctor will take any weight gain right now, I'm not satisfied when I know it could be muscle, if I had more discipline.)

And that's the other thing.  I'm losing my discipline.  I feel like I'm getting squashed into inactivity.  I feel like I'm getting lazy. 

I need this transplant to regain my life.  I hear of people being on the list for years and I can't see how I will be able to last even to my first anniversary.  I'm worried I have very little time left.  And then I worry that I'm spending my last good days WORKING instead of...well, going on disability and watching a few more sunsets and chasing a few more pleasures instead of helping everybody else get their stuff done.  FUCK.