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Posted 12/9/2013 10:59 PM (GMT 0)
I'd like to start by telling her family that Connie and this forum has been very important to me since I first posted in October of 2010. My partner was going through a difficult time with Hep C and Alcoholic Cirrhosis. His symptoms were out of control and he seemed doomed. Now here he is over 3 years later doing pretty well post transplant. Connie and this gang got us through...taught us what we were up against and coached us every step of the way...I would not have had the stamina to help my guy if it were not for Connie and this forum.

I told her sister several times that Connie was a gem...who helped so many many people. Thanks, Connie.

Hugs,

Carol
Posted 12/9/2013 11:16 PM (GMT 0)
Our Thoughts and prayers are with Connie's family at this time. Connie was there when we felt the world was coming down all around us. Connie gave us advice, comfort, compassion and blunt honesty when we needed it most. She was dedicated to this forum and the people in it. She was on here when she wasn't feeling well herself that is how important this forum was to her. She was loved and she will truly be missed!!
Rest in Peace Connie

Dennis and Kathy
Posted 12/10/2013 12:44 AM (GMT 0)
Connie was a friend. I will miss her terribly. We spoke about death on occasion and Connie was realistic about what might happen. I feel the same way. Neither of us was afraid of death, we just didn't want it to be painful. Connie didn't suffer at the end and for that, I'm thankful.
Posted 12/10/2013 12:45 AM (GMT 0)
To Connie's family: I can only express to you how I feel by sharing Mike and I's journey... Connie was with us long before these specific posts but... I have posted the beginning and the end of the walk on the Other Side of No Treatment....

Connie lives with us in each moment as this forum grows and gives to each other the precious gift that was given to use and that being ... caring to help one another through some of the toughest moments of our lives..
and so this is our story:

March 15, 2010 On the Other Side of No Treatment..

There are those of us who walk on the other side of the words "no treatment"... for Mike and I it has been 2 1/2 months... while his physical well being has not changed... our mental well being has suffered greatly... out here in no man's land... the dr wants no return visits... and is surprised when Mike does return... almost as if to ask "Why are you still here?"... with Hep C, Advanced cirhrosis, liver cancer, tumor too large to remove.... we wait.. no detioration of physical well being...he is independent in all things.. cooking etc.. no ammonia build up... every month does have fluid removed.. that is the only treatment at this point... with all this we are thankful for this time and for his general wellbeing... the emotional and psychological part have taken their toll.... we have withdrawn from each other... afraid to speak of the unspeakable... finally we did... but the specter of death hangs over our heads... Mike does not wish to have hospice come in until the very end... which could be a short or long time from now.. who knows...

Today, Mike's bedroom door was open... and a familiar love song was blasting from his room... there he sat... little yellow man with his big fluid filled belly.. sitting on the edge of his bed... head in hands... I said nothing... sat behind him and held him as he cried... and I cried... as though for hours and each moment will be etched forever in my memory... and that song opened a night of talking about the unspeakable... and tomorrow... we go forward into the dark future... loving each other... holding on... to the time we have as it slips away ever so slowly and yet so very quickly... into the unknown...

Sandi


Connie's response:

Arneeb, I heard on the news about the flooding. Hope you guys won't have to evacuate.

You have a real gift for expressing your feelings. Have you written any poems for Mike?

My thoughts and prayers are with you both.

Hugs,

Connie


Mike's Death... April 22, 2010

My post

April 22, 2013 4:12 am Thanks for ur thoughts.... I was wrong b/p was 42/32... his potassium level is 6.2 his bp has recovered... but he was in renal failure.. he has urine output right now... I think what started this was he was on high blood pressure medicatioin... and I told him... he needed to not take it ... dr had mentioned this six months ago.. at some stage that the pressure would be lower... and with as finely tuned as Mike's system has been that put him over with the bp... but he has pneumonia... heart is stressing... and will fail if they can't get the potassium level down... he has confusion.. ammonia level 208... don'tknow how hi that is... but for now some levels have improved.. he is on a ventilator... but it's a mask type that assists... they were seconds from intubating him but didn't have to... so prayers for the day folks please... I'm sure I'm missing something... thanks... for now Mike hanging on.. Sandi hanging on...


Connie's response
April 22, 2010 2:30 pm Sandi, that's a high ammonia level. Thanks so much for taking the time to keep us updated on Mike's condition. Have you gotten any sleep since he was admitted? Remember to take care of yourself during this crisis.

Hugs,

Connie


later that day...
April 22, 2010 7:30 pm Mike died to day at 3 p.m. His kidneys failed... blood pressure crashed... along with the liver... and the ammonia level was high...and he wanted DNR.. so that's what we put in place... thanks for all the support here... I will write more details later... Funeral will be on Tuesday... Sandi


Connie's response
April 22, 2010 8:10 pm Sandi, words cannot express how sorry I am to hear of Mike's passing. At the same time, I'm glad that he didn't linger and suffer. I think he did very well for so long, and so did you in being there for him. My thoughts will be with you in the rough days ahead.

Gentle hugs,
Connie



Thanks for listening...

RIP Sweet Sweet Connie. You are loved by many... Sandi
Posted 12/10/2013 12:48 AM (GMT 0)
Connie didn't just give us words of encouragement. She knew everyone of us and followed us through our journeys. I wanted you to see just one little picture of how that is for us. What a blessing it was to have her there in those moments.

Sandi
Posted 12/10/2013 12:53 AM (GMT 0)
I met Connie here in 2008 when I was diagnosed with ESLD. I wasn't internet savvy and never did a group or forum thing. A friend showed me the site and asked me to participate as it might make me feel less alone in the diagnosis. The friend (unannounced to me) had been conversing back and forth with Connie about me for weeks on the forum. She was waiting for me to pop up on here, Armed to the teeth in a effort to save me.

She cared about me when I had pretty much given up hope. She listened when I was scared out of my mind. She calmed me down when Encephalopathy was raging. Not just on the forum but through personal email also. Sometimes all we need is that one person that identifies with us. Connie was that person, and not just for me but hundreds more just like me. We both had similar past and a streak for rebellion. She had something I didn't at the time. A capacity to care for others deeply. Deeply enough to reach out to a hard headed difficult guy like myself who she carried no obligations to. She could have just been a moderator but she was far more and didn't have to be either. None of the mods get paid here nor do they ask. This wasn't busy work for her, it was her life.

Connie and I had a ongoing grammar issue. Issue was she cared and I didn't. I eventually had to concede a bit in order for her not to go insane or her drive me there. Anal didn't even begin to scratch the surface as a definition. She's probably giggling somewhere as I write this but during one of my rants I used the word flew when referring to "the flu". She had a ball with that and used to subtly bring it up during post when I started going off kilter through the years. That really got my goat and she knew it. She could be a devilish little thing when she wanted to and I liked that about her. The woman had guts and smart as a whip. Geez I'm gonna miss my buddy, aggravating corrections and all. To her sister and family I wish you all the best and thank you for letting us the HealingWell family into your life during this sad moment. We loved her and she wont be forgotten.

Ziff
Posted 12/10/2013 4:11 AM (GMT 0)
Even though I never met Connie in person, she has been a daily presence in my life since I found this forum in October, 2010. My husband had been diagnosed with alcoholic cirrhosis. I was ignorant about liver disease and scared out of my mind.

Connie reached out over the forum and held my hand through the hardest time of my life. She shared her knowledge and experience. She was encouraging. She told truths.

She could be fun and fun loving, but serious as was needed so many times with this serious disease.

Connie was so giving of herself, answering posts at all hours, letting folks know when she would be away and wouldn't be able to answer promptly.

Connie was a true teacher. Teaching about liver disease. Teaching about sobriety. So many of the things she taught me, no one else has ever mentioned before or since. Connie helped me and lifted me up so many times, she has certainly helped to make me a stronger woman. She helped me to see my personal growth, even when it wasn't apparent to myself.

At a time when my husband slipped (and he has had a few), she helped me to see that this was not my fault...because I had expressed shame and feelings of failure about his inability to keep with his sobriety. Connie was very vocal about her belief in AA. This belief led me to Al-Anon. I have been attending for 18 months, and this has helped me a great deal. I will always be thankful to Connie for this. My husband now attends AA. And while there may be struggles with his sobriety in the future, I am okay with this uncertainty because Connie helped me to learn how to sift through a mixed multitude of feelings to be able to identify what is most important to me, and how to define and protect my boundaries.

Connie shared so much of herself. Reaching out and helping the members and lurkers on this forum. And all the while suffering from this horrible disease and other ailments herself.

She was one of the strongest individuals I have ever "met".

Connie was always here. Even though she has passed, she will continue to always be here. She was so much the heart of the forum. Her words of love and encouragement, words of knowledge and advice, words of consolation and hope, are still here for all to read and learn from. We can all still see her signature, "But that was yesterday, and I was a different person then." Lewis Carroll, Alice in Wonderland. And receive her written "Hugs" sign off.

RIP dear Connie. My heart is heavy with sadness and I will miss you greatly.

On brave wings she flies. A new angel in Heaven. A new star in the sky. May her journey of light continue.

Love,
Emma

Post Edited (healthynow) : 12/10/2013 1:55:27 PM (GMT-7)

Posted 12/10/2013 4:25 AM (GMT 0)
First I need you to know My thoughts and prayers are with you. I would just like you to know connie helped me take care of my husband. if I was scared and didn't know what to do all I had to do was post on our forum and Connie and a lot of others would help me do what was right for him. I will miss her very much. She was an Awesome, Selfless lady.
Dorothy
Posted 12/10/2013 5:07 AM (GMT 0)
Please accept my sincere condolences. Connie was an inspiration to all of us at Healingwell. When new
members would come on Connie would be one of the first to welcome them and give them expert advice. Everyone knew that she knew probably more than any doctor. She lived it. And she lived to share her knowledge with so many. I know all the members of this forum will miss her terribly. But I also know that she taught them well. This forum will continue to be the best because of her. In short we loved her.... again. I am so sorry for your loss. Pink Grandma
Posted 12/10/2013 4:22 PM (GMT 0)
When I met Connie, my husband was already dying. I was torturing myself thinking that there was something I could do. He wasn't even really dying of liver disease, though no doubt his liver was involved. Rather esophageal and then bone cancer.

Connie helped me to find a place of acceptance to do what I could, and forget about what I couldn't. In the end, Craig left this earth at peace and on his own terms. I know that it was the way he wanted it.

I can see Connie in my minds eye, in a perfect body, with no pain, in the company of all who have gone before her. It is a marvelous sight.
Posted 12/10/2013 8:55 PM (GMT 0)
Bump.
Posted 12/11/2013 6:42 PM (GMT 0)
I just wanted to say I'm sorry for your loss.

Best thoughts,

Hugh
Posted 12/11/2013 6:42 PM (GMT 0)
Connie was and is my mentor in caring.
Posted 12/13/2013 1:55 PM (GMT 0)
Connie will be missed. Her information was so very helpful for me and my husband. May you find comfort and peace.
themiz and themister
Posted 12/14/2013 8:28 PM (GMT 0)
bumping to top of list
Posted 12/15/2013 2:56 AM (GMT 0)
Whenever there was a member in need, Connie was there for them. she either calmed their fears, gave sage advice, or just listened to them vent.

She always ended her posts with hugs!

I know the angels in heaven are embracing her now.....
Posted 12/17/2013 9:52 PM (GMT 0)
Wow, now that Connie is gone, her absence is glaringly obvious. Seems we not only lost a forum moderator, we lost a friend, a mentor, a great listener and a persnickety grammar teacher. (The forum just isn’t as grammatically “neat” without her.) nono
Just kidding.

One of the strongest women I have ever met, Connie has experienced it all. She was a knowledgeable supporter on so many levels, whether it was drug addiction, alcoholism, hepatitis, and/or transplants to name a few. She either experienced it herself, or witnessed it in others. Her transplant blog is a prime example. She worked on that blog religiously, and now so many folks can benefit by walking down that transplant road she walked…quite a legacy.

Connie lived by “no strangers here, only friends we haven’t met yet”. I was one of the lucky ones who got a chance to meet her in person. She was a lovely hostess and a great conversationalist. I only wish I had met her sooner. Connie got so much satisfaction from helping folks. I’ll bet she received many late-night calls or frantic emails over the years, and would drop everything to help a friend in need. And just when you thought you learned all you needed….she gave you more.

This is really a team effort here at HW though, Connie just happened to be team leader. Connie herself learned so much here, but she gave back tenfold. She set the tone for the forum and did a fine job of it. Her compassion was so evident even when she needed to use harsher language with certain members. But she still closed her posts with hugs.

If Connie was going to be gone for a bit, or tied up for a procedure, she would email a bunch of us to please take over in the forum until she returned. Talk about a mother hen....she didn’t want anyone to post in the forum and not get a prompt welcome and/or words of support.

That’s just how she rolled.

(((((((((Connie)))))))))))

Mae

Post Edited (Mae be here) : 12/17/2013 3:18:01 PM (GMT-7)

Posted 12/17/2013 10:57 PM (GMT 0)
We are all better for having known Connie...
Posted 12/18/2013 1:18 AM (GMT 0)
I have found myself in recent days looking down through a post in order to reply to someone and see Hep93, I catch myself for a second thinking Connie just replied.


Ziff
Posted 12/18/2013 4:38 AM (GMT 0)
I'm so sorry to hear of Connie's passing.I didn't post often but when I did she was always here to share in her wise wisdom.Connie will be truly missed by all. RIP sweet Connie
Posted 12/18/2013 11:54 AM (GMT 0)
Ziff,

I was half-way through an email to you and the usual suspects, to ask WTH?? I was wondering who was posting under hep93 as an "elite member". But when I went to look again, they were posts from mid-November, lol.

Glad I rechecked before I hit "send" on that email :)
Posted 12/19/2013 2:57 PM (GMT 0)
All,

I am really sad about Connie's passing again today. And glad that all our members are here supporting each other in so many ways.

December's holidays can be hard for a lot of families, including (or maybe especially in this group's experience) those affected by Liver Disease. It can be complicated with his physical AND emotional manifestations. And losing our fearless leader has not been easy either.

My family should have great joy this year on our personal journey, but still we worry every day...what's next, will his treatment work, will he be okay? But we have to remember the one day at a time thing...today he is good...sober, alive, active, few symptoms, mentally well...excellent. Tomorrow will have to take care of itself.

Hugs,
Posted 1/26/2014 5:34 PM (GMT 0)
bump...in Memory of Connie
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