Topic: An observation, and a little unloading

After reading a post from a member about their feelings on other members' "assistance" I feel the urge to write this.
I became a moderator not because I wanted to, but because I was asked to. I try to help others based on my experience, and things I have read. I WANT to help. Most of us have received our minor in the medical field (haha) because of our journeys, or those of of our loved ones. I know that I would be happier not knowing most of what I've learned in the past 3 years. Portal vein, hepatic lobe, embolization, adenopathy, and the real stinker: CHOLANGIOCARCINOMA are words I would much rather not know.
I cry every day. I cry when I read the story of the woman who had a pain and had to get a stent. I cry when I read about the man who only lasted 14 months from diagnosis. I cry when I read about successful resections and transplants. I cry when I read of the 17 year survivor. I cry. For me, for you, for all of us.
And then I keep going. I read many posts through a river of tears, and if I can, I respond, in order to help someone else who is scared, nervous, looking for answers.
Most of us do not have medical backgrounds. We are here to help. Many of us have lost loved ones, but are still here. Wanting to help. I apologize that I can't help everyone. But I just can't. Sometimes it's because I have no knowledge about their question. Other times it's because I just don't know what to say.
God bless each and every one of us. I pray for a cure for us all.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: An observation, and a little unloading

Hey, Hey, Hey, Cookie, since when do you use all swear words? (Portal vein, hepatic lobe, embolization, adenopathy, and the real stinker: CHOLANGIOCARCINOMA ? Joking. I know some might not like the way we joke but humor is such a great release. When you came to the Lake this summer we laughed so much....between our tears.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: An observation, and a little unloading

Well said, dear Kris.  We can't thank you enough for taking on the role of moderator.  It is a huge commitment and requires a steady and cohesive presence on this site.  From the bottom of my heart:  Thanks, it is very much appreciated, respected and deserves great praise.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: An observation, and a little unloading

Kris so spot on.  Thank you for being there for so many.  It is hard reading through the tears and so great when a little hint of humor brings a smile to the lips.

Wishing all God's blessings!

Re: An observation, and a little unloading

I think many of us have a dark humorous side now. It helps to cope with the stress, the unknown, and the known issues of our new normal. I KNOW my humor has gotten very dark sometimes! lol
And Lainy, you know I swear! I just have picked up a few more swear words along the way!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: An observation, and a little unloading

Hi Kris,

Well said!!!  This site has helped me immensely.  But there are some times that I am overwhelmed by this beast of a disease, and my symptoms, that I have to stay away for awhile.  As you said, it's hard to read some of the posts.  Especially the very sad ones, when I'm going through such a difficult time so I need to protect myself.  That may seem selfish but it's the only way I know to handle my emotions and try to stay positive when things look so dismal. 

I have received so much knowledge from this website that I can't thank the moderators, patients and caregivers, who share their stories, enough.  I think we all need to keep things in perspective.  I know, for me, I have doubts as to my treatment sometimes - especially when things are not going well.  I think that's normal.  Whenever I have looked for advice and comfort on this website, I've always gotten it.

Thank you all.

Peace & Love,
Mary

Re: An observation, and a little unloading

Kris,
I cry happy and sad tears like you after reading posts. I feel such a connection and bond with this wonderful group of people I have never met which is so amazing and I love it! This group has pulled me through my darkest days. So many supportive members...so much great advice and research..links to articles and clinical trials.....I feel at home with all of you.
Peace and hugs
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: An observation, and a little unloading

Kris,   Just saw this and all I can add is AMEN!  You have stated it well and I totally agree.  All we can do is the best we can, when we can.  I have so much respect for those of you fighting this disease who are also caring enough to be there for others.

Lots of love & hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: An observation, and a little unloading

Kris, I hope that you and the other moderators realize how much help you provide to others.  I try to help the Foundation by reporting on Webinars and providing occasional review of documents but I know I don't have the sensitivity or emotional strength to answer posts the way you do.  I think the person who criticized the members of the discussion board for not being helpful enough was probably feeling frustrated and overwhelmed.  I lost my temper at the grocery the other day and later realized I was really feeling angry about my husband's illness but I directed the anger toward the poor grocery clerk instead. (I'll be banned from the store if I keep this up!)  Overall, I think this is a remarkably civil and friendly discussion board and I don't know how I would have survived the last year without it.

Re: An observation, and a little unloading

All you moderators do a selfless, amazing job here and I'm not surprised that you all feel a bit deflated at the moment.  There were times in the last year that I only managed to hold it together and get through the next day because of the support here.  I don't want to go over old ground but tomorrow is another day and wake up knowing that whatever you all do, you do good and I am grateful to know you all.
x

Clare

In the stars now . . . .

Re: An observation, and a little unloading

This is a joint effort from EVERYONE who wants to participate. New members, old members, moderators, Marion, Lainy, Percy, Gavin, Pam, who am I missing? All the rest of the almost 3,000 members. When I joined in April 2011 there were, I believe, 1700 members. Unfortunately we are growing more and more quickly.
There are a few members I can rely on to answer my questions, or just try to make me laugh on a bad day. Many of you know who you are. Many of you don't. When I'm feeling down I love to visit Lainys visits from Teddy posts. It makes me smile and feel better. Percy and Gavin are wonderful sources of new developments or research information. Without them I would know about half of what I know. So I guess being me I should say I hate you for that!! Just kidding! Marion has donated many more hours than you could guess (and her own resources) attending conferences, etc., to find research, medical and financial support toward a cure. I'm not meaning to forget anyone: just mentioning a top few on my list of resources and support. Some of these people could have left when their family member passed, leaving us to find our own way. But they didn't.
The support of this forum has gotten me through almost 3 years of being scared, looking for answers, venting, needing support, or just looking for a giggle. Oh, and a great place to share any of my good news!
And I have met some wonderful people. I have met Kim, who left us 2 years ago, Marion, Karen, Tiffany, Lainy, Pam and Lauren, Lisa, Eric, Chris, Renee, Mary, Vince (who is not on this site), and a couple more who's names are escaping my muddled brain. I hope to meet Sandy in NYC along with anyone else who wants to get together. I want to see the tree so Jan. 4-5 are the best days I guess. Yes, I want to be the CC Ambassador! Not really.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.