Failed evaluation

This is a really nice post, Deb...so heartfelt...thanks.

I've had some hard times dealing with Mike's various stages of illness and though I am not a liver patient myself, all this stress and HE and anxiety has sent me to counseling. 

Hugs,

Mama Lama aka Carol

hey deb,
i appreciate your understanding words so very much.
i really do not feel singled out. there would be no reason for that, but i think it is confusing for them to change the rules.
the pain pill thing was 4 yrs ago. haven't even thought of them since. it is no longer a part of me. that, to me, was a short term coping mechanism, and it did help.

**David** my biggest stressor is concern i will get very sick, not be hooked up at a center, and UNC has already told me they will not TP me no matter how sick i become. but, after that statement, regardless how strongly i felt it was stated, he gave an example of a guy that came back a yr later, was reevaluated, and accepted. (Maybe that was u ziff:) but i can't read the small print. if that was what he was saying, he could have just said do this, do that, come back to us, and we will take it from there.
they did NOT like my x husband being my primary care person. he can still cause some emotional reactions from me, but i swear it gets better and better each week. in fact seeing him for the evaluation was great for me as i caught myself, many times, saying, "I am so glad i am not married to him anymore". I do have a thing about rejection, and that is what the emotion is ,more than me missing him, or us. we both readily admit that we should not be married. we r both much nicer people not being married! so i said i can change that. my sister did offer, but again out of state. michelle the nurse coordinator told me i am not allowed to have an out of state care person. this was said friday on the phone. they all knew b4 this that joseph was out of state. she made me feel as if she was grasping at straws to collaborate their position. i was very calm during that phone call. no tears, no sarcasm of course, and no quibbling. i was so caught up in the moment, that i did not think of all the questions i wanted to ask. one came up a couple of hrs later and when i emailed the head doc and asked if they continued to treat me like he said, and i became ill would they TP me, and he said no.
so...i can spend 6 mos, a yr, to please them, and hope they change their minds, and hope i do not become too sick in the interim. or i can start the process from the beginning again with another center and hope i can keep the emotion out of it. u nailed it Ziff. i was nervous there. i was very uncomfortable. the worst interview was with the psychologist. i had no idea she would b so probing. the first thing she said to me was "i hear u were in a MVA in the early 60's, do u have PTS because of that?" i have no idea if i have PTS from that. i barely remember it. i don't want to get in a wreck any more than the next person but i am not phobic about it. in fact i love driving.
ok guys, enough is enough.
thank u all for ur help, input, ideas, and concerns. u r the only place i can go that i feel is on my side.
warmly,
zoarie

Post Edited By Moderator (hep93) : 11/3/2013 10:54:59 PM (GMT-7)

Zo, If they aren't working for you by all means get into Duke and start fresh. We are fortunate that we have two options in our state, Many have none. I'm puzzled at the response you are getting from UNC but something appears to be amiss. I could be "that guy" but hard to say. So many people pass through those doors. Oh well, You just focus on the next move. You know what to expect this time and you go in loaded for bear not rabbit. Jot down that list of questions and prepare yourself as if you're going into a job interview. Work on removing your stress as best you see fit even if it means walking out in the woods and screaming your head off every few days.

Ziff

Post Edited By Moderator (hep93) : 11/6/2013 11:32:05 PM (GMT-7)

Just for clarity - I benefited from live in treatment far more than AA although AA was a great practical follow up.  ANYTHING that helps is best!!  Zoarie you mentioned Buddhism, that's awesome, too. Also ... for someone who has had addiction troubles, using the narcotics is red flag behaviour no matter how long ago it was.  It's just not considered acceptable coping behaviour and they're probably concerned you might return to it especially in a life and death struggle.  Connie asked an important questions about coping.  Zoarie, be brutally honest with yourself and take action if you think you would benefit.

Ziff in your last post _{....."I heard things my wife didn't when attending my appointments, Much imagined. HE and the stress of feeling like every word I said was being analyzed made me paranoid ....I heard only negative when others heard positives and would argue to kingdom come insisting I was right."}

You just explained what happened to me for about 3 years!  Obviously it's not uncommon behaviour for any of us.

Zoarie I don't even want to know what's on record in terms of my mental or emotional stability ... try and let it go and prove to them that you're on your way to de-stressing, etc.  It took me a very long time to realize losing my mind from time to time because of HE is my new normal.  So is anxiety and confusion.  A person CAN live with it though.  I would never have made it without this forum.

Thank goodness you're following your instincts and finding a care plan that works for you.  Perhaps you'll never have to have a transplant!  My health has improved greatly and my meld score improved ... it can happen.

 

Ziffle ... it will be my mission to help my doctors understand the paranoia aspect.  I'm not afraid of them thinking I'm unstable, because I am.  There comes a point when you just let it go.  Nobody can take your dignity unless you allow them to.

I confused this post with another where someone was saying their higher power was Buddha.  My mistake as I realized later.  Thanks for the chuckle, tho'.

Have had two overpowering "episodes" lately (one last night) but I'm getting better at dealing with them - my sister and I have worked out a care plan that is comfortable for both of us.  I don't know what song it is ..."my head is like a football - I think I'm gonna die" ... comes to mind.  Am resting and recovering at the moment.

I recently drove 3 hours when I clearly shouldn't have been on the road ... I tuned in to a gospel station and it's the only thing that got me home.  When the paranoia sets in when my fogginess is peaking ... the gospel station somehow soothes my mind.  I don't question it - I just do it.   THAT'S why I say whatever helps, just do it.

Sorry if I hijacked this post - didn't mean to.

 

Happy to do it!