Meeting other hepper friends

[DjTurtle]

I don't get over here that often, but had to share this photo of a get together of heppers on Cape Cod.

Bill and Lyn(Sparklegirl) Djturtle, Susie(momxfive), and Viper!!

[19Dragon52]

{{{Dj!}}}

Nice Pic Gal!  I just now saw this!  Miss You & Viper...wish you would check in more often.  Anyways, it's nice to see the gang.    You folks take care, okay?  Tell Wayne I said, "Hi!"

Much Love Always.....

[willy]

DJ, Nice to see you guys.  I'm glad you had a get together.....  ain't it fun?

Willy

[sharasmile]

NICE PIC..FROM OUR CAPE COD GROUP ..HOPE TO SEE YOU ALL IN N.C. BETTY AND I ARE GOING TO MAKE SOME PLANS..

SHARON

[Betty W.]

I really am slipping !!! I do not know how I missed this post. you are a good lookng group.
Really would like to formally invite you to our NC get- to- bond Good- Hugging -Time !!
I am so very excited wish it was next week. I do think Susie (Mom) is going to come, Hope all of you will join us.
We are going to try holding down expenses we just want to have fun, see some places and just be together.
Let me hear from you and keep up with the thread.....Love and prayers.....Betty

[DESERTROSE]

HELLO, I AM A NEWBIE, MY NAME IS DESERTROSE AND I AM A IA FAILED TX BUT MAY BE ON NEW ONE IN THE FALL. HAVING SOME PROBLEMS COPING.I AM HOPING TO START A SUPPORT GROUP IN MY AREA IN OR AROUND AUGUST, I NEED THE SUPPORT AND I KNOW OTHER'S ARE OUT THERE AND WE NEED EACH OTHER, SO PLEASE KEEP YOUR FINGERS AND TOES CROSSED ALL GOES WELL. SEE YA.

[Hank's mom]

Dear Desert Rose -
I started a local support group a couple of years ago by posting a shout out here in the forum. I was really fortunate to meet Dj and Viper (shown in the picture below) who had been trying to join a support group that never had any people. For over a year we were the only 3 members and of course, when one of us had to cancel, there was no meeting. Dj and Viper have done a lot more networking getting some more members, yet it has been sloooow going because all kinds of issues come into play - 1) We're all sick, which means we can't always make it to meetings, 2) Some heppers and especially txers can't or don't drive, 3) Many people don't want anyone to know, often including family members, 4) Many think they can handle it alone and/or don't really get the concept i.e tho we meet for encouragement, info swapping and sometimes whining, we also laugh and don't have to hide or don't have to explain the various issues we have to non heppers. Basically, it is a lot like the forum, we feel at ease with each other.

You can look up on the internet a few national groups such as the American Liver Foundation which will give a listing in your area. I actually did this today www.liverfoundation.org and then found my region, New England. There is also a toll free number for your area.

My mom belongs to a support group for people with serious chronic illnesses. Illnesses include cancer, heart disease, diabetes, HIV and yes, HCV and HBV. She tells me that many of the issues we deal with are common threads among all the members. For example, what we call riba brain, brain fog, hepper head, etc, cancer victims on chemo call chemo brain of chemo head.

The main thing is to not get discouraged in starting or finding a support group. In the meanwhile, we are here 24/7, have chat room Wed. p.m. and Sunday p.m., and can also be reached via personal message (PM).

I'm sorry you went through an unsuccessful tx, I'm a non-responder so at this point there is no tx I can use. It STINKS! Many of our members are on their 2nd, 3rd, and more tx.

Stay as positive as you can and be well,
Susie

[DESERTROSE]

MOMXFIVE THANK YOU, YOU ARE RIGHT SO MANY PEOPLE STAY IN HIDING AND THAT IS WHY I NEED SOMEONE. SOME OF MY FAMILY MEMBERS ARE AFRAID OF ME AND MY HUSBAND IS GONE. I AINT SURE HOW TO PM MAY IN THE CHAT ROOM TOMORROW SOMEONE COULD HELP.. THANKS  DESERTROSE

[Mongo]

D. Rose,

Just a reminder:  You've got dozens of people on your side...we're all right here.  If there is anything we can do to help, please know that there are ready, willing people right here...right now.


I, for one, would be more than happy to talk to you about starting a local group for support...


In the mean time, there is a group that meets almost every Sunday, on a conference call that we started earlier this year.  You are most certainly welcome to join us.  Let me know if you want to catch up with us some Sunday.



All my Best,


Kerry



By the way, I like your screen-name;  I have a cactus blooming in my front yard next to a desert pine.  I'll look at those flowers a little different tomorrow.       

[Betty W.]

D Rose, it is good to meet you, I would like to welcome you. I am also 1A and have not started treatment.
Everyone here will be more than happy to assist you on any problems you may be having. We are all like family.
Talk tomorrow night. God Bless you Betty

[pete c]

 HI DerestRose   

 Hey sory i missed this post  , Man i can sure relate to what your saying  ,dealing with miss understanding can be no fun at times, People at work try too understand only they see the outside not the inside of this thing,if you catch my drift.

 Family  trys to understand  yet the same  so it does become a challenge to deal with at times, That why i come here to share with those who do understand  and can relate to what,s going on. Hey hope things get better for you my friend  ,just want to share one of favorite thoughts  i read some place , THE POWER WITH IN YOU IS FAR GREATER THEN THE FEAR IN FRONT OF YOU, so just remember that your neve really alone .
                                                                  pete

[Pancho and Lefty]

Hello Everyone,

I'm a regular here and had posted to a UK before before getting in here. I'm not sure how I could have gotten this far without all of your support.

I'm also been to one face to face meeting in Salt Lake. I made a friend I can call anytime. He's come down to visit and I've visited him in SL. Maybe I'll make a 90 mile round trip to be at the Tuesday meeting unless something unforeseen comes up.

I understood from a distance the comraderie the people from this forum experienced during the get together in the bay area. There seems to be something more essential about meeting in person.

I wonder if some people with hcv allow themselves to accept the stigma others would place on them that might prevent them from seeking the life giving fellowship.

My own family is made up of people with integrity, each at varying degrees of maturity. One thing not all of them understand is that hep tx can be difficult. Hep can be difficult.

When I get face to face with another hepper, introductions can be very simple. . . misunderstandings about hep and tx don't exist. I would love to see a better network of support groups where anyone interested can feel safe and be assured of getting the support they need.

This is a great discussion.  Kerry and Desertrose, If my feeble efforts might further the cause please tell me how to help.

Pancho and Lefty   (Max is no longer adequate to my rapidly changing personality)

Might change later on to Pancho, Lefty and the Indian who's wife has to walk because. . . "she got no horse . . .  depending what feels right.

Peace

   

[Mongo]

Pancho and Lefty   (Max is no longer adequate to my rapidly changing personality)

Might change later on to Pancho, Lefty and the Indian who's wife has to walk because. . . "she got no horse . . .  depending what feels right.

   

Pancho was a bandit boys
His horse was fast as polished steel
Wore his gun outside his pants
For all the honest world to feel
Pancho met his match you know
On the deserts down in Mexico
Nobody heard his dying words
That's the way it goes

From the song, Pancho and Lefty, by Townes Van Zandt



Dear Pancho and Lefty,


My regards to you both,


Mongo

[Hank's mom]

DesertRose -

I hope you have found or will soon find some heppers that you can face-to-face with, even just one other person such as Max finally got to enjoy meeting makes all the difference in the world. I did forget to mention this - can you post a notice or invite to other heppers at you doc's office, the VNA, hospital or clinic. If people feel free to let their hair down they do come and relax.

Hope it's improving for you,
Susie