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support group

hello everyone.

Has anyone out there attended a Hep C support group? I have tried to locate one in my area, POrt Angeles, 2 hours west of Seattle but no luck. I have since traveled to Cleveland for a week and tried to find one there with no luck. So, I am starting one and you are all invited!!! June 30th will be the first one and i will run it once a month. I have posted fliers all over and contacted all drs. offices. The ALF has sent inf. along with Hepatitis Magazine sending lots of free back issues for people who attend. Wish me luck, I am not sure what I am doing but for those who don't go online need a place to go. Hep C touches so many lives. Even though I live in a small town I must hear at least once a week of someone finding out they have this virus and don't know what to do. I will let you know how it goes.  Any suggestions would be helpfull.
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Avatar universal
Still got the support group going in Port Angeles? I live there and am looking for one.
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Avatar universal
Way To Go..... It Sounds Like You Really Have It Together!!!

Also, all that experiance from the 12 step meetings ought to come in handy... Many folks struggle with current, or past addictions, & it's hard for people to get over the intial "Shock" after discovering their diagnosis... much less struggle to make sudden "Life Style" changes after the REALITY of it all sinks in...

The Value Of Support Is PRICELESS!!!

:)
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Avatar universal
Thank you, I needed that comment. You sound nice and postive. I am doing this for the folks who can;t get online and there are lots who are not comfortable with a support group on line. My doctor sure poo-poo it. So, I poo poo him!! I am also aware of to many folks showing up who have had a bad experience with tx so will do my best to get some people there who cleared. I belong to a 12 step group and have been attending meetings for 26 years and it is there that I meet people with hep C. I have contacted American LIver Fondation along with a few others who have sent lots of information, vidios, you name it but I will call your suggested organiztion and see what they can do, Thank you, I will keep you all posted.
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Avatar universal
I think its great..Giddy and I go to a support group at our local hospital. It meets the second Tuesday of the month. We get more information here online in this fabulous support group, but there is something nice about being face to face with people going through similar situations. The nurse that originally ran it when we started going a couple of years ago no longer facilates and now is run through the ALF. One good thing about a local group is sharing information about local doctors (we can be quite catty) primary as well as GIs and hepatologists, local labs and even the hospital. There usually is a small turnout, but thats ok, everyone gets a chance to talk. Keep us posted on how it goes!
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Avatar universal
That is definitely admirable, & noble...

You can order Brochures, Flyers & Posters from the CDC... they are Free & they even pay the shipping..
I always order the MAX of everything, & generally go thru a couple of cases a month!

I did the same thing... but when I did it... it was an accident... (it sure wasn't planned)... I started off dropping flyers in grocery carts simply to spread the word..... however due to some legal, & emotional problems that my youngest was having at the time, I had the opportunity to get some local agencies involved... & it just GREW on it's own!

I personally do not run the thing (but very involved... I like to attend & speak on occasion) ... I am just pleased that at least our community has one now!

Heads Up.... people are leery of "non-profit" organizations that pop up left & right (as anybody without valid credentials can do that as a "scam" to line their own little greedy pockets... these type of people see HCV as more of an opportunity).... Our Local Sheriffs Dept. told me all about that, & how it works..... so you do not want to associate yourself with that breed of mentality.....  Keep it simple, local, & for "support"... Good Luck, & I wish you great success!
:)
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Avatar universal
I agree, this is my support group, too.  It's so much easier for me to get support, here, than to have to go out somewhere.  The only group in my area is a 1/2 hr away from here, at night, at a hospital setting.  I'd much rather, put a post up on here, laying around in my lazy boy or couch and then, come back every now and then and check it.  Because lot's of times I'm just too fatigued, weary, etc. to move, much less have to get all presentable and drive that far.  So, that's my take on it all.

Susan
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Avatar universal
good luck with the project!
I gave up on offline support groups, when no one answered my phone messages on how to join them.
This forum is my support group, and it was all that I needed.
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Avatar universal
Hey that's admirable-you've always got us though 24/7. frank
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Avatar universal
"This is my support group"

today I have belly aches even though I am taking previcid. My shoulder  is hurting as it has for the last 2 weeks .
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Avatar universal
Good luck with your support group.  Before I found this sight I had talked to several people with hepc who were very suportive, but they were spread out over the country.  I had one girl in florida who e-mailed regular and was a great help.  I have found this sight to be one of the most positive and informative places I have been.  Not all the people have good outcomes but I have never seen such fighters before.  Knock them down and they keep getting up.  

You might want to share this sight with your group and if they arn't on the internet you can always share the info.

Good luck,
Freddie
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Avatar universal
Have you been to this web site? http://hepatitis-central.com/hcv/support/main.html

I looked to see if there was a support group in my area.  Just a thought.

I think it is great that you are starting this up. Good luck.
Helpful - 0
Avatar universal
I think it is very admirable to start such a project!  When I was diagnosed with Hep C my gastro doctor told me I should attend a local support group here in north Georgia.  I was surprised to learn there was a support group here and was eager to go. I was scared to death and depressed from my news....although I committed early on that I WOULD do the treatment to try to beat this and wanted to discuss with others their experiences before starting. When I went to the support group there were 4 people there. One man was there who was just diagnosed and knew absolutely nothing about his disease (I'm not judging him but surprised he hadn't done ANY homework at all!) Another person literally was blind in one eye and said while on treatment he went blind in both eyes in the first 4 weeks of the treatment and told us his treatment had to be stopped and he was waiting for a liver transplant. He did regain vision in only one eye.(note: he did also tell us he had eye complications BEFORE treatment but the drugs pushed his eyes over the edge to blindness), and the other person the treatments (tried 2 times) was unsuccessful and aslo waiting for a liver transplant but had reconciled he won't be getting one as he had too many other complications from HepC and was planning for his immanent death. Very sad and frightening to say the least. So MY first experience with getting support turned into a nightmare for me and I left there feeling like I CAN'T DO THIS which was the complete opposite of how I felt BEFORE I went in the room!  I share this story only to say that IF you do start a group to support be SURE there are some SUCCESS stories in the group to actually give those terrified the confidence to start.  Yes, there will always be those unfortunate stories which make you cry your eyes out, or create terrible panic in your soul, but that isn't everyone's story. When I left the meeting I thought everyone had a horrendous time and that treatment won't work but after talking more to many nurses and several doctors I was convinced not all stories are this terrible. Be careful not to scare those like myself so that they keep an open mind to treat their illness instead of running away in complete fear and turning their backs on it.  It took me over 2 months to reconsider actually following through with treatment as that meeting was so frightening.  So glad I did as I am now at 18/48 and feeling confident as I got my undetectable status at week 12! Sides havn't been easy but I'm managing them. In the meantime I discovered THIS great place of support and knowledge and this IS MY SUPPORT group.  I thank you all for that..... In the meantime Moeymitt good luck with your group. It is admirable and I applaud you and truly hope it is what you hope for and gives others the support and listening board they need.
Best to you, Scott
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Avatar universal
I hope it's ok to add in here. I'm wondering if people with thyroid problems could tell me their differences from hyper to hypo? Are they real clear? Which is form what? I was on tx on both and wonder which are tx and which thyroid. I do have an idea but I am now having definate something or other that I beleive has to do with my thyroid. I was hoping people could help me out here and share. I've cut my thyroid meds in half since the sweats got so bad. Thanks for any responses. LL
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Avatar universal
hope so snook 12 to go, i get my labs done wed  have my alt ast back thur hope there down,
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Man, I'm glad to hear it. We both seemed to be going dowhill, but looks like we caught our footing.. Well, for now anyways!
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Avatar universal
ok all my sx are gone today thank god, ive been working in a boiler room very hot could have been dehydrated i  think,
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Avatar universal
This is my support group.  but i hear you - if you don't go on line.... anyway good luck to you!  if i didn't live in phila pa., i would come to yours.  (you know i always wanted to see seattle...)  You are definitely doing a positive thing; i am a big supporter of support groups (?) We went to one when our infant son died; and now this on line site for hepc - no matter what it is your dealing with, NO-ONE can understand unless their in same situation to some degree.
keep up in touch how all goes--
chelle
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