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Author Topic: Support Group...seeking advice  (Read 2092 times)

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Offline livingpositively

  • Member
  • Posts: 369
Support Group...seeking advice
« on: July 23, 2006, 02:41:44 PM »
I went to the clinic where I was tested/diagnosed yesterday and talked with the director about a "newly diagnosed" support group.  You see, when I received my diagnosis, I asked about such a thing and was told it didn't really exist here in Milwaukee.  He was going to try to put me in touch with someone who was fairly new, but that never came to fruition.  Luckily I had a couple of other people here, and then all of you guys to get support from.

I want this to be an ALL-INCLUSIVE group, than as people see their needs changing, they can move on to something different.

That said, the clinic director kind of put the skids on my idea.  He said he would rather see a support network than a group.  So, when he gets a new diagnosis, he can put them in touch with someone that they can talk to about "stuff".  I don't see that this is a bad idea at all, but I still like the support group idea as well.

Of course, this topic has been around here recently.  Am I just completely naive or stupid, or something?  I understand that different "groups" have different needs, but at the time of diagnosis are the needs really that different from one person or group of people to the next.  In my mind, the majority of the questions will be the same..."What should I expect next?", "What do the labs mean?", etc, etc.  Or just an ear to listen to the "I'm scareds"  Very much like what happens here only in a face to face format.  Is that so wrong???

So, the seeking advice portion comes now.  If I can't get the support of this clinic director, how can I get this started and is it feasible?  I don't want to slap flyers up on telephone poles...you know what I mean?  Of course different states an municipalities have their own rules, but does one typically need any type of licenses or permits to do such a thing.  It's not a business venture, just a "get together"

I just want to do something.

Thanks all.

Shane

Oh, and I'm going to start volunteering at this clinic as well.  I have a medical background, so they want to put me through the state training to do STD testing, run labs, blah, blah, blah.  I'm going this Wednesday night for an outreach testing "thingy".  It's a start.
4/6/07   CD4 450, % 23, No VL
2/19/07 CD4 487, % 26, VL 47,500
1/4/07   CD4 357, % 27, No VL
10/3/06 CD4 500, % 26, VL 18,000
7/6/06   CD4 530, % 29, VL 83,800
4/6/06   CD4 555, % 28, VL 13,000

Offline purplerain

  • Member
  • Posts: 100
  • finally figured out the pic thing
Re: Support Group...seeking advice
« Reply #1 on: July 23, 2006, 03:02:49 PM »
I think its a great idea... Being newly diagnosed myself (6-20-06) there are lots of questions I have that only someone who has been dealing with this 4 a while can answer but at the same time I think it would be refreshing 2 talk 2 someone who is going Thur what I am at the same time. It's like AA.  When going 2 meetings u learn from those who have gone before u but have a tendency 2 bond with and understand most people who have the same time of sobriety as U.  I hope that makes sense. 
Good Topic Shane
Jason

Offline cflas

  • Member
  • Posts: 40
Re: Support Group...seeking advice
« Reply #2 on: July 23, 2006, 04:37:47 PM »
I think it's a great idea (and I also the clinic director is a jerk)!  While I understand the concept of "support network" I know that I would never call one person to discuss new labs, fears, anxiety, symptom concerns, etc.  I just hate the idea of intruding into some else's fragile existence to deal with "my" problems.  However, knowing that there was a group with whom I could meet every week or two would be ideal in that I could address these issues with a wider group of people and then get differing opinions.

Hey,slap those flyers on the sides of  buildings.  What the hell...!  Would the clinic director give you space to hold the meetings? chris

Offline DCGuy511

  • Member
  • Posts: 61
Re: Support Group...seeking advice
« Reply #3 on: July 23, 2006, 07:05:17 PM »
I attended a support group for newly diagnosed. I was involved for about 18 months or so.  I found it very helpful. When I was first diagnosed I tried to reach out to two poz friends. I was ridiculed by both of them. I no longer speak to them. I had a "support network," friends, a great doctor, therapist,etc., but I felt that I needed to talk to people like me, people who had contracted this thing recently. Not only was it an informative experience, it was also a safe place where I could say anything. I met some really great guys, still in contact with a few.  I highly recommend it.
Steve
Infected/Diagnosed Fall 2003
"No Man Is An Island" - J Donne

Offline Cliff

  • Member
  • Posts: 2,645
Re: Support Group...seeking advice
« Reply #4 on: July 23, 2006, 07:15:39 PM »
Did he nix the idea outright, or perhaps is it a matter of putting together a proposal of sorts to help sell the idea to him?  Support groups are really common, so I'm suprised he would be against it.  Did he have reasons why he doesn't support a support group?  Plus why would it be a concern of his anyway?  He's not the one using the service, his patients are, perhaps they should have some say in the type of support they receive? 

It would be helpful to have the clinic's backing so that newly diagnosed (or transfers) would be referred to the support group.  Alternatively, you could seek out another HIV organization and see if they will help you.

Cliff

Offline livingpositively

  • Member
  • Posts: 369
Re: Support Group...seeking advice
« Reply #5 on: July 23, 2006, 07:25:32 PM »
Thanks guys.

Cliff:  No, he didn't completely nix it.  He said they did it before and it didn't "work out" for whatever reason.  He didn't really go into that.  But he also made reference to the "different needs" issue, which for newly diagnosed I'm still at somewhat of a loss to understand.  I could get in touch with one of the ASOs in the area.  I think there's 2 here.

Jason:  That's kind of what my vision is - to have the group, but also have a couple of "veterans" there that can answer some questions about things as well.  And while people have their docs, etc to talk to, I thought it would be nice to be in a "non-clinical" setting.

DCGuy:  That's a shame that your "friends" weren't there for you.  Glad you found what you needed elsewhere.
« Last Edit: July 23, 2006, 07:29:38 PM by livingpositively »
4/6/07   CD4 450, % 23, No VL
2/19/07 CD4 487, % 26, VL 47,500
1/4/07   CD4 357, % 27, No VL
10/3/06 CD4 500, % 26, VL 18,000
7/6/06   CD4 530, % 29, VL 83,800
4/6/06   CD4 555, % 28, VL 13,000

Offline Eldon

  • Member
  • Posts: 2,664
Re: Support Group...seeking advice
« Reply #6 on: July 23, 2006, 07:38:49 PM »
Hi Shane it's Eldon. You are not alone when it comes to the "vision" of having a face-to-face support group. If you are interested, I have a copy that Tim (Moffie65) sent me a few months ago. It has all of the in's and outs of starting a support group.

When I was in Miami, FL, the clinic I was going to told me the same thing your clinic told you. I was shocked to hear that they didn't have a support goup in Miami? established. To no avail, I proceeded to do the smae thing that you did, I went to the director and started asking questions. While all of this was going on I got on the internet to seek answers.

To my surprise, I stumbled upon AM and I'm glad I did. However the face-to-face issue was at hand. I finally convinced the case workers that we need a support group where people can come and share and exchange their views and get support from other people who are going through the same thing as we are. I was told it was in the making and it would be a month or so before they would start anything.

A month went by and they still didn't do anything and I began to wonder. Actually I never hsared this on the forum until now. Then my parents decided to relocate and move to North Florida to a small town called Lake Placid. It is a bout an hour South of Orlando and it's not even an EMA (Elgible Metropolitian Area) for Ryan White Title I funding.

The case worker here says the same thing that there is no available support group either. So I plan to get together with the director here to talk about getting a space for the meetings. if not I'm going to look for a community center that we can hold weekly meetings there. It's more than one way to skin a cat.

Shane, you are on the right path to get things done. You want to be more involved with making things happen and to reach out to others and give them the support as well. All of this starts with making that first step just as the couple who moved to NC seeking the right kind of treatment because both of the girls (I forget their names) are positive also, and they are looking for treatment and support.

Don't be afraid to make some noise and to get things going on your end. I'm sure working on that now down here. It is a good thing that you are volunteering there and that way you can become more involved and make things happen on the inside instead of the outside.

If you need any questions asked, I or someone else will be available to assist you with this. Thanks for Listening.

PS = If I was there where you are, I would be your first group member to join the support group.

Offline otherplaces

  • Member
  • Posts: 398
  • Mutant Super Hero
Re: Support Group...seeking advice
« Reply #7 on: July 24, 2006, 01:55:26 AM »

Shane,

I'm a bit shocked that Milwaukee doesn't have a newly diagnosed support group.  In a city of 1 million (I think that's the number)??

I participated in a newly diagnosed support group and detractions aside (another thread) it was good for me.
Not only that but we had a doctor visit the group and also a rep. from the Chicago AIDS legal council to speak and answer questions. There was also supposed to be a nutritionist but that didn't seem to work out. 

It seems obvious that there's a need for something like this. Rock it!!!!

take care,

brian

Offline pozniceguy

  • Member
  • Posts: 1,176
  • Niceguy Dallas
Re: Support Group...seeking advice
« Reply #8 on: July 24, 2006, 07:27:16 PM »
Shane... I am also surprised that a city that size has no "organized" group...here in Dallas there are several support type organizations  some have funding from Govt agencies and some are privately funded...the one I found most helpful and least intrusive was organized by the AIDS clinic...It was a "workout" session designed for infected persons..they emphasized all the basic issues...diet..meds...and a proper session of exercise that allowed even the most affected persons to do something....Most of the group quickly bonded and started "swapping "info about effects of meds..how to handle friends and work associates...even found out about travel restrictions to certain countries.  These are many of the issues (except work outs) you will find here in the forum  but it is really nice to have a live person to talk to and relate with.   Ask clinic to sponsor such a "session" and you set the agenda for the meetings to address whatever topics are most in the minds of the attendees.     We used questionnaires to find out what were the prevalent questions and then tried to assign someone to go find answers/expert advice to share with the group....also learned some workout techniques that supplemented the treatments for"wasting"  which most of us Had experienced

good luck and hang in there
Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

 


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