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Author Topic: Does anyone do support groups anymore??  (Read 5012 times)

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Offline BubbaPat

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Does anyone do support groups anymore??
« on: August 23, 2023, 08:51:57 pm »
Just something I was wondering.
I looked around DFW some time back and couldn't find any.
I know there is a Resource Center but I didn't find anything of that nature.
Does anyone feel the need for it anymore?

Patrick
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Offline numbersguy82

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Re: Does anyone do support groups anymore??
« Reply #1 on: August 24, 2023, 06:41:43 am »
Interestingly enough BubbaPat, we are about to have regular support group meetings here. I am not a moderator but we are def in the final stages of putting together the logistics and structure for them.

I agree with you, in person or even virtual support groups are hard to find. Also they are poorly attended and tend to not be regularly scheduled. I believe that is a huge focus as the team here hopes to fill that much needed gap.

Would you attend if this forum offers a regular virtual support focused group??? In addition, we meet for a less formal virtual gathering regularly which tends to lean more towards socializing and fellowship, but still discusses medical and health topics.
JOIN US FOR PEER-ish SUPPORT Every other Friday @ 7pm EST, PM me your email address for meeting link/information

Strive for “One Day When” by collecting “One Day Wins”

Offline Tonny2

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Re: Does anyone do support groups anymore??
« Reply #2 on: August 24, 2023, 07:02:11 am »






            ojo.          Hi dear bubbapat…bear hug to you from your sunshine buddy…hang on n there that life is still beautiful, take it from someone who lives with pain 24/7 and losing his eyesight but still fighting…I do have my bad moments but my mantra is “ there’s someone else who has it worse than me”…love

Offline leatherman

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Re: Does anyone do support groups anymore??
« Reply #3 on: August 25, 2023, 07:05:47 pm »
HIV support groups have always been a problem. First, you had to be in an area with enough population to have enough PLWH to even begin to think about having support much less in groups. Then as time went by and transmissions were reduced, the amount of PLWH, even in urban areas, began to stabilize and decrease. Not to mention funding for support services. Treatment funding is always chosen over mental health services. How about HIPAA rules for privacy preventing patients from knowing and talking to other patients. Doctors, even general practitioners, tend to farm out many issues; so your HIV doctor is never going to consider you mental health too much but would expect you to see a counselor, therapist, etc for that kind of health issue.

Every year I've volunteered with Ryan White, and at budgeting time I've voted to distribute more funds to mental health and peer support services. Every year I'm outvoted to fund treatment and meds. Heck! Everybody else tries to vote more funds to dental but that always falls pretty flat too.

Of course, I should point out that these very forums were formed in part because of a need of peer support. Way back in 1995, the internet was just starting to get some users. In 1996, ARVs were finally started to hit and PLWA/H quit dying. In 1999, aidsmeds.com started. PLWH started coming to this site to find out how to keep living, how to live with side effects, when the next meds were going to come to market, techniques or temporary solutions to not dying before better meds came along, and quite frankly how to deal with the deaths of our loved ones. PLWH scattered around the world needed some peer support but, like most of us, lived in areas where peer support was nothing more than a dream. Needless to say in those days of evolving meds and dealing with side effects, there were a lot more people here and a lot more posting.

Here we are nearly a quarter of a century later and even though most of the original gang have moved along (through death, or simply living past an AIDS diagnosis and going back to having a life), the forums are still going on.

Does anyone feel the need for it anymore?
the easy answer? yes

Newbies always need support to realize that it's 2023 HIV not 1994 HIV, and that they're not going to die. After that, they need to be pushed to realize that 2023 HIV is just a chronic manageable issue, not even a problem, for most. Then there are the people needing advice about dating, meds, adherence, insurance-y stuff, etc. Later on there's dating issues (still), trying to decide if your health issues are HIV or that you're just getting older. LOL But isn't that the whole point about taking meds? To get old enough to hurt, age, and then die in your 90s instead of dying in your 30s?

Interestingly enough BubbaPat, we are about to have regular support group meetings here. 
And what do you know? This site is evolving and trying to find new ways to give the peer support people need.  :D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: Does anyone do support groups anymore??
« Reply #4 on: August 25, 2023, 07:13:51 pm »
Quote
Does anyone feel the need for it anymore?

I wouldn't be here if there wasn't a need for it and I've needed it to still be here 😉
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Offline Dogman

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Re: Does anyone do support groups anymore??
« Reply #5 on: September 01, 2023, 05:43:45 pm »

Newbies always need support to realize that it's 2023 HIV not 1994 HIV, and that they're not going to die. After that, they need to be pushed to realize that 2023 HIV is just a chronic manageable issue, not even a problem, for most. Then there are the people needing advice about dating, meds, adherence, insurance-y stuff, etc. Later on there's dating issues (still), trying to decide if your health issues are HIV or that you're just getting older. LOL But isn't that the whole point about taking meds? To get old enough to hurt, age, and then die in your 90s instead of dying in your 30s?
And what do you know? This site is evolving and trying to find new ways to give the peer support people need.  :D

This is why I admire you (and others) who put up with us "newbies" and our tirade of the same questions over and over. We do need support. My day of diagnosis was the darkest day of my life.  I acknowledge we have it "good" compared to the long-termers and of course the ones who didn't make it, but getting my brain to accept that is difficult and it's a very real struggle. Thank you for recognizing this and always being this beacon of positivity, for lack of a better expression.   

Offline numbersguy82

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Re: Does anyone do support groups anymore??
« Reply #6 on: October 07, 2023, 06:41:26 am »
Hello! I just wanted to remind everyone here on this thread that we are about to have our 4th peer support meeting this coming Friday the 13th. Spooky date aside, we will be discussing mental health and navigating a positive outlook while coping with our diagnosis. I encourage everyone to participate as I myself have gotten a lot from attending these sessions. We feel more like family than merely attendees.

Please send me or @leatherman a PM with your email address to be added to the meeting invite.

Take care- Alan
JOIN US FOR PEER-ish SUPPORT Every other Friday @ 7pm EST, PM me your email address for meeting link/information

Strive for “One Day When” by collecting “One Day Wins”

Offline BubbaPat

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Re: Does anyone do support groups anymore??
« Reply #7 on: November 14, 2023, 03:13:52 pm »
Would you attend if this forum offers a regular virtual support focused group??? In addition, we meet for a less formal virtual gathering regularly which tends to lean more towards socializing and fellowship, but still discusses medical and health topics.

Yes... I would attend.  I'm not on the verge of anything crazy... it's just some days...it's a lot.
In the past, I just stop taking meds figuring, why bother?  They're expensive, sometimes I just forget, and sometimes, I just don't care.
I've never thought of HIV as some horrible monster yet, it just feels like a weight dragging me down somedays when other things are piling up too and the HIV is the one that I can easily blame.
I just want to feel like I'm not alone in theses ups and downs of feelings.
In the mast, I sometimes will focus on other things to help distract and I've gotten attacked.
I realize I'm ADHD and have been for years, I talk to much to mask my nervesnous, and I'm not super bright but because I'm energetic (thanks ADHD) and talk too much, people call me a know it all.  I'm not.  I just have opinions and I used to have friends where we discussed them, not attack each other for having them.  We talked and made each other better.
I've been a member here for years and sometimes have gotten a mixed bag.
If there is a group that we can do a chat online or organise and in person meet... I'd be game.

Sorry to ramble.. ADHD kicked in and it's been an emotional day.. and it's only 2pm here.

Bubba hugs y'all.
Bubba hugs!

Offline Jim Allen

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Re: Does anyone do support groups anymore??
« Reply #8 on: November 14, 2023, 03:31:34 pm »
Hiya.

I am sorry to hear that you are struggling and had a bad day. I hope things are better for you soon.

Quote
Yes... I would attend.

So there are two support calls: the bi-weekly support call: https://forums.poz.com/index.php?topic=77329.0 and the monthly gathering https://forums.poz.com/index.php?topic=77368.0

Best Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

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Offline BubbaPat

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Re: Does anyone do support groups anymore??
« Reply #9 on: November 14, 2023, 04:10:14 pm »
I am sorry to hear that you are struggling and had a bad day. I hope things are better for you soon.

Thanks Jim.
I know things aren't horrible.. just ups and downs.
Started new ADHD meds and laughed when the pharmacist said I might have vivid dreams.  Didn't have the heart to tell her I already have been having them.
Don't ya love those dreams when you wake up remembering only bits and pieces but still thing WTF?

Bubba hugs! Patrick
Bubba hugs!

Offline Jim Allen

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Re: Does anyone do support groups anymore??
« Reply #10 on: November 14, 2023, 04:18:07 pm »
Thanks Jim.
I know things aren't horrible.. just ups and downs.
Started new ADHD meds and laughed when the pharmacist said I might have vivid dreams.  Didn't have the heart to tell her I already have been having them.
Don't ya love those dreams when you wake up remembering only bits and pieces but still thing WTF?

Bubba hugs! Patrick

Same, my entire life I've had vivid dreams, to me that's "normal"
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

My Instagram
Threads

 


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