Tuesday 14 October 2014

Postcard from the edge

I gained a little weight finally, enough to be where I need to be. There are no signs of any pulmonary infections.  I am not coughing as much and I don't get into trouble very often.  I am able to manage 30 mins on the treadmill at 2 mph, most of the time without stopping for a rest.  I walked to the stores with Nicole on Sunday and even walked home up the hill.  It was nice but very hard. I guess I am about as on track as I could be.  Still, it gets harder every day.  More SOB faster, even at rest.  Thoughts and emotions count too.  The physical response is rather startling.  Just thinking stressful stuff can do it.  Anything and everything does it, constantly.  It is very boring, really.

Mentally I am not so great.  In terms of being sick and all that icky stuff I am ok still.  We are managing fine with that.  Watching Nicole have to do things because we don't get help is hard and discouraging.  Not having things like a little railing on the steps after a couple of years of asking, not having the money to fix it. Somebody is going to get hurt and there is nothing I can do about it.  

Everything financial is fucked up.  I need counsel but am afraid to go talk to the bank for obvious reasons.  We probably are ok on a balance sheet but nothing works currently.  I feel entirely incapable of dealing with this stuff, it makes me sick.  

Every damn word I write today I have to think of the consequences, of other people's feelings.  This is bloody absurd!  Why must I do this to myself?  I can write about this but I can't write about that. I can tell you about this pain but not that one.  

I have not told the doc about the daily prednisone, I just do it.  I need to call a bunch of people today to keep things working.  I probably wont.   I will exercise.  I will be happy.  I will live.  

Just write, Russell.  




Wednesday 1 October 2014

October my my time races on

It has been a month since I posted so its time.  I have been feeling reasonably ok.  I am short of breath even at rest now, but, my rehab skills are still working reasonably well.  I have had no setbacks, no new infections.  I take 15 mg of prednisone daily and that is keeping both my appetite and my energy up.  I eat more than I have ever eaten in my life.  I cant gain weight though.  At least I am maintaining around 110.  Not quite good enough for transplant but within ten pounds.  I could still force myself to get protein supplements going, but I will hold off a bit.  

Emotionally I am ok.  When I focus on here and now all is well. When I dwell on things I can't control, less so.  

I am at peace with the world.  No ghosts.  No hauntings.  My course is a true one.

Nicole gets stronger, more awesome by the day.  I gave her full power of attorney two weeks ago.  

Lunch today with the boys.  

I miss G+.  I miss you peeps.  I will come out of my cave now.

I go to these places in my mind and stay awhile.

I used to worry and fret about the effects of the of my slightest actions.  I dont anymore. 

Now is for me.

love