Hi Norma,

I'm trying! Fortunately for me, I don't have any experience of ESRD, dialysis, transplant etc, which understandably are frequent reasons for concern here. This means that I tend to leave these subjects to others who are more knowledgeable. I do try to be supportive, however, and will contribute where I can. We all miss Ruth, and I try to chip in when it comes to liver issues with which I have too much personal experience. Quite often I feel pretty horrible because of this disease, and looking after a family takes all my energies. I apologise if I don't always contribute, but it's most likely because I'm struggling myself.

I don't resent others when I don't receive many responses to posts, but it can be a little disappointing. What is good to know is that there are others out there who understand our problems and care. Perhaps we should be more generous with our hugs, even if we can't offer actual advice. I know I need as many (gentle) hugs as I can get! I'll try to at least offer understanding, and look forward to receiving hugs!

Love to all,

Chewitt

sometimes just hearing that someone cares is all that is needed for support. a support group is not just a place to get support but to give it back.
nobody dare suggest you don't do your part Chewitt.

Helen and chewitt are right and I too understand about not being familiar with particular issues. Just letting someone know that you are here and do care. Gosh I wish Ruth was here, but she's not so guess you are going to have to do your massive liver advise! Remember the old saying chew it! It's so big, it's taking over my body, one organ at a time!

It's certainly squashing all my organs. There's just no space for two massive kidneys and a huge liver. Even some maternity clothes can't accomodate it all! How are you these days?

Chewitt

Hi there, I am doing well other than getting old! Labs are all good, keep your fingers crossed, oh and I've just been told I have cataracts!! Guess I really am getting up there. The reason I went is because I am having such a hard time seeing on this iPad... Sigh ..for now, new glasses have helped. Jim is doing well too and we are thinking of getting into some trouble, just to keep things lively! If you do nothing else in your life, take this advise and do NOT get old! Lol. Thanks for asking Chewitt

Hi Norma,

Glad things are going well, but sorry about the eyes. My mother has three eye diseases, so I know what the problems are. My MIL had surgery for cataracts and was delighted with the results. Be careful about wishing for excitement. Every time I do that something I could do without happens!

Keep well.

Chewitt

and btw, where does it say this is a support group where only women give back?
you guys ask for support but when's the last time one of you offered support back?

Hello!

To be quite honest, I have found that there are great PKD community pages on Facebook which have many more people who are active.

Time marches on, and Facebook is more useful to menow!

Peace!
Coach Richie

Hey Coach Richie, good to hear from you. I have to admit, I have been wondering about so many of those who were here in the beginning and how they are doing.

Yes, I spend SO MUCH time on the internet, and just get so scattered and let time suck the life out of me. It is NOT that I don't care, I think that it is because I DO care. I went from here, to a dialysis forum to a transplant forum, and then there are a TON of other issues I am involved with besides PKD.... I am overwhelmed. But, I will continue to stop in here as often as possible, and when I can, I will be of help when I feel that I can.

II am not sure where to start but I do know this is not anything new! Maybe we have to expect this, for people to come here for help and advise, they get what they need and leave! Is this what we are here for? It's not what I thought, but maybe we have to except it and move on? Gosh, I have been here for a really long time, I sort of feel an obligation to help others that have helped me in the past. Obviously not what a lot of people feel. Just thinking out loud ...

I think I've been a member even longer than you have Norma! Wow! I don't mind people coming and going, but I think it's great when those who have gained from the group and are now doing well stay around to offer support and hope to others. I don't think anyone should feel an obligation, though. There are too many demands in life to add to them in that way. We don't still have all of our friends from years gone by, so it's not realsitic to expect that here. Having said that, as has been said, it is a support group. We should feel able to seek support when we need it, and try to offer help when we can in return. It won't work if active members take but don't give. We must also remember the "behind the scenes" activity with private messages. It's all support.

Chewitt

Hi there. I know there are a few factors that influence my involvement in the board. One is the normal everyday busy life of a family. The second, for me, is that this illness has caused me a lot of emotional and physical pain. I have found that the more I read,participate, etc. that I start to let the emotions and physical pain consume me in a negative way. It's not denial, just a way to avoid insanity. Just wanted to give my two cents

Blessings Jenny.... I understand... and do hope that you will take good care of yourself. Yes, we can't always be "ON" all the time... and we do have our seasons, giftings and energy levels.

I think that sometimes people think we are paid, and are expected to be available 24/7. There are givers and takers. Used to be a manager of an MSN group (remember Helen?) and people got downright nasty sometimes when they needed help, and would even berate managers for not giving them the "right" answers. People forget or don't take the time to know that we are all patients!