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Reply to "Primary sclerosing cholangitis"

T, thank you so much for checking in.  Everyone here and n the PSC form have been wonderful.  I can't thank you enough.  Jeff's getting very depressed.  He is bing eating again and has gain 30 lbs in the last 6 weeks.  I found a therapist for me, but I may have jeff go, but he is getting very stubborn and nasty again, so it's hard to talk to him.  I'm trying to keep him a little bit busy, but like I said, his mouth is getting out of control.   And when that happens, I look for places to hide.  I'm not doing well at all.  I'm truly a glass is half full type, but this is a real challenge.  I keep think who is going to die first, me or him.  As much as I say, I can't watch him die, I don't want him to die alone without me.  But he is not dying, yet, so I don't know why I'm perseveratimg on that.  I'm too Much of a realist!  I'm having difficulty learning how to navigate the NY doctors.  I'm used to just getting what I want, when I want it!  At RWJ, I knew the powers that be, so I just had to make a phone call, and it happens!  I spoke to the doctors directly, the secretaries, etc.  at Cornell, not so much!!  But I'll learn the landscape soon enough!  

And yes, I'm trying to take care of me.  I went back to the gym for the first time in six months this week, but my back is killing me now.  I've been to yoga a few times this week too, but my poor back.  So that makes it hard to me to keep active.  I'm going to Get a massage this afternoon, so hopefully that will help my back.  

I have to say, this has been the most difficult time of my life.  I've had more than my own personal challenges, but I'd take them back in a heartbeat to make this go away.  I'd have 6 more open heart surgeries if it would make Jeffrey better.  But unfortunately, nothing is going to make him better, not even a transplant.  The PSC seems to return and attack the new liver.  But I'm way ahead of myself and I need to focus on the here and now rather than the what if's.  Hard to do!  But for today, we are ok.  Jeff is tired often but getting out of the house, so I should say, all things are good!  All things are good, today is a good day!  now if the sun would come out, it would be perfect!

 

ok, I'm doing better!  Thanks for allowing me to vent a little bit!  Love to you, and hope you are well.

dianne

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