Long term survivor and isolation !

[monin73]

Greeting everyone ,
This past winter was one of the most difficult periods in my HIV life ,
constant research , advocating , and persistence to find out what was going on witH my health . An Aortic aneurysm, pulmonary aneurysm , Staph and bacterial infection in the lower lobes of my lungs . Additionally Candida D. , causing outbreak of Thrush ,
skin infection ...
Anyway things have somewhat been managed but with Health care being the way it is today it's difficult to keep different specialists onboard with various issues .
My problem seems that I'm so full of taking care of myself , advocating , pharmacies , doctors , financial insufficiency that I have no time to socialize . Also explaining any of this to any friend is complicated and I find that the attention starts to wain .
I live her in Provincetown, while we have a Long term survivors group I found it dealt with the facade of being a survivor .
Long story short , I hope I'm wondering if there any retreats out there , anywhere for people like us . A period of time to get through to the issues and stop feeling so alone .
My oldest brother died of PCP at St.Vincents in 1985 , my youngest brother died of Aids complications at home in 1997 . Along with the 100's of friends , acquaintances etc since then .
Diagnosed 1990 , treatment Intellence , Prezista , Isentress and Norvir

[leatherman]

hello to you! 

I live her in Provincetown, while we have a Long term survivors group I found it dealt with the facade of being a survivor .
Long story short , I hope I'm wondering if there any retreats out there , anywhere for people like us . A period of time to get through to the issues and stop feeling so alone .

unfortunately I don't have a lot of help for you; but I definitely understand part of your predicament and empathize with you.

There was a report (posted in Poz a couple yrs ago called "older and wiser" page 28
http://www.poz.com/articles/older_and_wiser_2791_24349.shtml) where they estimate that there's only about 50k hiv+ people left from the "old days". That's not too many of us when you consider that number is spread across all the states.

I live in a very rural state with a small population (<5million people live in all of SC), so support of any sort (newbie or LTS) is few and far between because the 15k of us, .3% of the state's population, are very scattered. You are kinda "lucky" to be in an area which might actually have services for, much less a population of some size of LTSes. I do have to say though that I have been very amazed at the amount of people I've met in SC who are also LTSes. Of course, I have to go to advocacy events down in Columbia (the infamous state capital sans the Rebel battle flag now) to meet the couple dozen LTSes scattered around the state; but that's better than when I lived in OH back in the 90s, and nearly everyone died leaving me alone without any peers at all.

now there are those "Let's Kick ass (AIDS Survivor Syndrome)" people over in San Fran (and a couple of other places I think) (http://letskickass.org/hiv/) but, of course, as one of the first focal points of the epidemic, it's only natural for areas like that to have more LTSes and the advocacy for their issues. I would think NY, and even your area, will also have resources for LTSes probably long before SC gives a crap about the couple dozen of us pozzies left over from the 90s.

ugh! here's an article (from the first of this yr) talking about this same predicament, even talking about your retreat idea
http://www.thebody.com/content/75416/the-cost-of-long-term-survival.html?ap=835

if I had any advice to offer it would be the advice I gave myself after my late partner passed away and I had to move back to SC. I took (as in I forced myself to take) every opportunity to get out and meet more people. I used my advocacy network to meet up with other LTSes. It has helped some to know these other people; but since we all live so many miles apart, unless we're doing some sort of advocacy work together we don't get the chance to meet with each other much short of the phone and internet. (thank god for the internet - a shut-in's or LTS's best friend!)

[rondrond]

Welcome monin...

Winters are getting harder to weather....sorry to hear of the problems it has been causing your health.

It seems that I find a regime that relieves my symptoms, and then...something new has to pop up.....

At least you got your Dr synced....I had to do the same and it has been wonderful knowing we are all on the same page as for years it appeared it was.. 'every Dr for himself.'

The loneliness is overwhelming at times, and I am surrounded by family....but they really don't know what I've really lost....though they do try.

Hang in there...change is inevitable and you seem to be taking steps to get through today and make it better for your future.

Ron

[Wade]

Hi Monin,
You have indeed had some bad problems.
Sounds like your on the mend, your a tough one !
The older we get the more obstacles pop up.
You in P Town Ma ? If you are I'm on Cape also, as is one other member
I know of .
Hope things start getting better for you, Wade

[flashdance]

1990...East Central Illinois....and I would not use "isolation" as the issue. I never put any effort in the act of isolating myself. If you ask me....I feel more like I am being left in the dust.

And it is not the community of LTS that is leaving me in the dust....I feel as if the state and local advocates are just getting to the point of "getting tired" in providing the same services with less money and concern from the general public and strangely even being mistreated by newly diagnosed HIV positive people.

I think the biggest problem that has protected our privacy for so many years has now turned the tide and the privacy protection is now becoming another source of destroying our desire to continue to live life to the fullest.

Family? I am ashamed that my attempts to continue to be open with family members...has even gotten to the level that our experiences have molded us into great strong individuals......and that last word....INDIVIDUALS will be death of us.

Obamacare initiatives....the laws were passed...and after a couple of years...I hoped that some of the health care issues that I have luckily been protected from.....is now just smacking me across the face over and over day in day out.

Every LTS individual needs ONE GREAT PHYSICIAN....and then when that great physician cannot figure out a new medical issue then allowed to seek out specialists.

Instead of being much better protected and cared for....I continue to wonder if the new medical insurance environment is killing me faster than the virus has ever played havoc with my body.

Should I move back to Chicago and be among a larger population of LTS folk....or should I just continue to stay happy in my heart and safely away from others?

[weasel]

   Hi  Monin73 ,
                     Nice to meet you 

    Not sure if you know ?   POZ Forums has a gathering once a year .
   We just got back from Memphis for 5 days of friendships , site seeing and general conversation of what has happened since we last met .
  It is a retreat of sorts . It's where I get to be HIV without having to worry what other think . It's a great feeling .

  On another note I will be on and off the Cape for the next 5 weeks , Maybe we could meet up for a drink or lunch ?  I have met a few from your group over the years , always enjoy talking with 
   I envy guys like yo uthat live in P-Town , Living in a small town of 57 people makes me feel very lonely at times .
  My husband of 30 some odd years loves to be isolated     , But tells me to go home to CT. knowing I will be going all over New England having a ball .

                                             Be well , Carl

[leatherman]

If you ask me....I feel more like I am being left in the dust.

And it is not the community of LTS that is leaving me in the dust....I feel as if the state and local advocates are just getting to the point of "getting tired" in providing the same services with less money and concern from the general public and strangely even being mistreated by newly diagnosed HIV positive people.

I think the biggest problem that has protected our privacy for so many years has now turned the tide and the privacy protection is now becoming another source of destroying our desire to continue to live life to the fullest.

I  think you hit the nail on the head. That is certainly part of the issues here for LTSes in SC.

[timmm55]

How about the POZ cruise? Nov 8 2015

http://cruisedesignstravel.com/about-poz-cruise/

[guitargal]

Hi Monin,
I know how it is and with winter coming I wonder if you are feeling better and finding ways to not be so alone with it all..
The Vt PWA has a retreat every year, July?  and people really look forward to it as it is sometimes the only time they get to be /talk with people in the same boat. There are  Dr.s and workshops and groups and just fun time too..I have not been in years and I think a few people from other NE states go, but look into it for next year, it really is great.

does your local PWA or ASO organize anything , weekend workshops / retreat at B& B ;s or anything.. 
i used to go to some of those here and they were great to connect to others. they only have a few each year, but those and the PWA retreat and the woman retreat really helped during the first 6 -8 years that i learned i was pos.

My lady at my ASO, hardly does her job..she had kids over the years and is part time and not really helping much..maybe she helps others but there are probably 30 people that use that regional office for services.. 2 people at the office.
she  is only one trained person at that office,the other is great and kind but runs the food bank.. is not doing her job much, hardly calls me, did;t care much when i was laying in bed for 3 years..in the past 5 years she has been to my house 3 times and hardly ever offers to bring me stuff from the food bank..she could mail me the gas cards that they have to reimburse people for doctor travel...but she doesn't ..what i have to call and beg for services..for charity!  she is burnt out now and i feel no one cares in the ASO's

i am tired of people that don't do their jobs. they get in and do well for a few years then get all cushy and let things slide.

I am going to move to a bigger place where there are more people and services.

I am leaving soon to go south. my town  population <1000.  15 minute drive to grocery and pharmacy in rain and snow while feeling really low and fragile and in pain  is not the way i want to spend the last years of my life.

Going to Florida.. I hear St.Pete is nice. anyone on  here that I can visit on my way down 95? I got 20$ and a credit card..

[floridartist]

Hi there, I'm going to ramble on with a little story because I'm isolated, I like the topic, and I have just enough energy to share,   I'm one, yep, I,v become isolated, I have also become an outsider,  I guess am a hermit that lives alone in a wood loft house in the woods of North Central Florida, a little river town, I like it out here a lot but its getting a bit lonely since the ex got a huge inheritance and then suddenly abandoned me along with 10 fixed outside pet cats 3 years ago that hang out with all the deer, owls, hawks, and the rest of the critters in the woods, I basically just feed them and fix them when they get sick. Yep, when the ex left me the depression became so bad that I spilled the beans and told my small town folks I am HIV, along with all my other secretes, I don't know what that has done to my reputation, but the word is out, and know one has seemed to reject me.
 Its been said I'm one of the best river artists around here that oil paints scenes of the rivers and springs, even with that I'v become an outsider, I don't follow artist way of gallery's, art co-ops and with my HIV I cant handle doing art shows anymore, yep, I'm an outsider, I'm doing it to myself, I kind of like being an outsider, it makes me different, I'm like an activist that activists the activists, Does that make any sense ? I guess I'm different, Now that all the other artists are trying to capture my style it seems to push my style to stay one step ahead of the other artists style and its wearing me out, I think I am wasting away. HIV sure doesn't help. Now that I wrote this much, I need to lay down, I'll be back with part two of my story.
 

[floridartist]

Part Two, Ok, the little exercise of writing in this topic seemed to have helped me being I finally got out of the house and faced the world, I also came up with a simple quote for my  isolation,
 "Tomorrow is always here"

[BT65]

Hi Florida, glad to hear you're doing better.

Betty

[Wade]

Hey florida,
I lived in central Florida back in the 70s before moving to Key West.
Sounds like your near Ocala ?  An artist paradise 
Glad to hear your doing better also .

Best, Wade