Things you'd like family and friends to know

[Guest guest]

Dear group,

Only a handful of you in this group know this, but I have had a lot of issues with by older brother and the hurt it has caused has been tremendous. His lack of interest in my life, and his "don't bother my wife with caring for you" attitude has taken it's toll on my little heart. I'd rather suffer from liver pain than the pain my heart has felt these past few months! Then again, I have always dealt better with physical pain. A week or so ago we had a conversation in which he made it clear that he felt I owed him an apology for telling his wife he'd hurt my feelings. (He asked that I also go to his two best buddies and tell them he isn't a jerk, he's just misunderstood. Just so you know, that's NEVER going to happen!) He said he wasn't uncaring he just needed to be told specifically what to do. He went on to explain that I shouldn't be hurt that he didn't help with putting together the benefit Trivia Night for me, after all he has one coming up in two weeks, in order to raise $7,000.00 for his Legion baseball team, and he wasn't even done with it, yet. Tell me if I'm wrong here, but it sure sounded to me like he was comparing funds for a potential donor for my life saving liver tx to funds for a baseball team. Death --- season without new uniforms, wow, I'd be torn. He also told me that if my 'husband' (who I've been separated from for 3 years and two months) can't take care of me, THEN I can call them for help -- but, I should remember, he stated, "my job is stressful and I like my down time. I enjoy working crossword puzzles and reading a book." It went on like this for 2 hours. The one good thing that came out of this conversation is that I no longer have any misconceptions about where he's at in all of this, I KNOW I can't count on him now.

I'm happy to report that I am working through the hurt and anger and trying to come to a point of forgiveness for those things that warrant it. However, I have discussed this with my team of "advisors" (that is what I so lovingly call Ali, and ) and discovered that they have gone through something similar in their lives and know what that hurt feels like. Yesterday, though, told me about a thread that was started in the liver families support group and emailed a copy of it to me. That's when I realized that this is a very REAL issue for chronically ill patients and really should be discussed. After all, this group isn't just to address the medical side of things, it's here to help us all cope with ANY problems we address. I think we could stand to discuss more of the mental/emotional side of illness (depression whether do to overwhelming circumstances or as a result of hepatic encephalopathy) AND how to deal family and friends (and the loss of many of those when we get too sick for their comfort).

Please, bear with me another minute...I have the list that emailed me but I only copied and pasted the beginning comment, hoping that some of you will add things you would like your family and friends to know. Even if you choose never to say those things to them, for whatever reason, I think it may help just to express them to someone. I'm sorry if this seems like a goofy idea, it hit home for me. I hope it helps at least one other person in this group. (Thanks for tolerating this long email!) The list begins like this:

"Family & Friends, I would just like you to know..."This thread is to create a list of sorts.Hopefully it will help all of us.If you sat your family and friends down in a room, or if you wrote aletter to themall...make a list of things you would like them to know...get sad, getmad, get happy...whatever you'd like. You may be helping someone rightnow to get ready to talk to their family or friends.I'll go first:"Friends and Family, I would just like you to know:"1. I've lost almost all my old friends. Some of them are too scared tocall because they don't want to "bother" me. Some of them just don'tcare. Some of them don't want to be bothered by "medical" me. Face it,conversation about poop and blood isn't as intriguing as who is havingan affair with who. This is the life I live, and sometimes it's all Ihave to talk about. I don't know if you knew that.

Thanks for indulging me!

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

OK I will induldge!!!!"Family & Friends, I would just like you to know..."This thread is to create a list of sorts.Hopefully it will help all of us.If you sat your family and friends down in a room, or if you wrote aletter to themall...make a list of things you would like them to know...get sad, getmad, get happy...whatever you'd like. You may be helping someone rightnow to get ready to talk to their family or friends.I'll go first:"Friends and Family, I would just like you to know:"1. I've lost almost all my old friends. Some of them are too scared tocall because they don't want to "bother" me. Some of them just don'tcare. Some of them don't want to be bothered by "medical" me. Face it,conversation about poop and blood isn't as

intriguing as who is havingan affair with who. This is the life I live, and sometimes it's all Ihave to talk about. I don't know if you knew that. Thanks for indulging me! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

I'd like family and friends to know that this time for my family has

been so stressful. I feel as if through it I have lost my father. I

know he is aging and that may play a role. He does not like hospitals

and won't admit that his (favorite) grandson has this illness. He

won't listen to updates that might be less than favorable, so now he

just prefers not to listen and tell me that I am freaking out...not

advocating. (But this is the same man who let me suffer with

migraines all through high school...puking my guts out...and possibly

UC b/c I did have diarrhea and my mom thought I had anorexia...I was

93 lbs when I got pregnant with Zoe.)

I'd like my friends to know that it is lonely not be included. I

don't want anything from them. I am so lonely. You just have no

idea. I took care of my neighbor after her hysterectomy for 3 weeks

only to have her totally ditch me...for no reason. I cleaned her

house...I fed her kids...I don't understand. Or maybe I do...people

just don't care!