Author Topic: My 25th Year With Hiv And It Sucks !!!!!!!!!! Seeking Friends And Support ! (Read 11962 times)

marc1236 · « **on:** October 06, 2009, 01:30:07 pm »

I've had a hard time of it lately,emotionally and physically. I became detectable 9 months ago after being undectable for over a decade.I was laid off from my job 9 months ago which I had for many years and i lost my health insurance when I lost my job. Survivor mode kicked in and I got free healthcare from a medical clinic that gets donations from private individuals which is on the west side and they have doctors in a department there who only treat hiv and AIDS.They are great ! They are better doctors than the health insurance doctors I use to have.Also I have been getting free hiv meds for many years through ADAP and i still do. The downside is my virus has mutated,which i found out a week ago.The Atriplah I was taking for 3 years does not work in me anymore.They did a geno-type blood test on me and found out about the specific mutation/strain of virus I have now.My doctor put me on some new drugs last week and I feel more energetic.I take 5 pills a day now /twice a day of various hiv drugs on an empty stomach.He said it will be a month before I'll be able to know whether the drugs are working.

The thing is I've isolated myself and have not socialized with anyone in a long time. I'm attempting to get out more.There is a support group I plan to join soon that meets once a week.Though I need a group or friends I can see more than once a week ! I use to go to a variety of support groups for hiv...but the people i grew close to in those groups died. The doctors tell me I could live many more years with hiv and said its a chronic conditionYet my recent blood test results remind me I am still not safe or out of the woods.And that its far from chronic !!! This is my 25th year with hiv and memories of its darker days.
The stress causes such tightness in my neck and skull. Doc gave me some medicine to relax. I try not to take that medicine since it makes me so tired and limp all over my body.I work out at the gym every day and watch my weight. I'm just not sure what will become of me. As for work I look all the time.I do get unemployment money and am on my first extension. I'M REACHING OUT to you and would love to have friends to do things with and LIVE and also I want to join a group for hiv support.I live on the westside by santa Monica And Brentwood and there are NO groups over here.There use to be.

Miss Philicia · « **Reply #1 on:** October 06, 2009, 01:46:04 pm »

I was on treatment for 13 years before they got my viral load suppressed, and it's been suppressed now for the past 3 years -- the newer generation of medication is much better. I also, like you, transitioned from private insurance doctors to a public clinic and have found my doctor to be as good as if not better than what I had previously. Because of the patient demographic he deals with he's very experienced with resistance issues, etc. So it's a great fit for me.

Isolating yourself is never good, so I do encourage you to be proactive in searching a support group you are comfortable with. I was able to locate a small group targeted for long term survivors where I live, and have gone to it monthly now for three years. Also, though I have not done it myself, I know some other group members have found the Strength in Numbers social group to be helpful -- they have chapters in most major cities and run their meet ups through yahoo groups. You just sign up and get on their email list -- they meet up at bars, or go rafting, etc. More stuff like that.

You're going through a lot right now obviously, with the compounded effect of having been laid off. That happened to me in 2001 and it was a most unpleasant period. I don't have much advice other than try and keep your head level, which is easier said than done. Best of luck.

marc1236 · « **Reply #2 on:** October 06, 2009, 05:59:53 pm »

I appreciate the kind response someone just gave me to my posting.But what puzzles me is that alot of people have read my posting and I only got one response.WHY is that?

Miss Philicia · « **Reply #3 on:** October 06, 2009, 06:28:41 pm »

Hey Marc, it's probably because there are a lot of people who read posts in Long-term survivors but aren't LTS'ers themselves, so they're not supposed to post in here. If you had wished for more responses you should have placed this post in the "Living With HIV" forum which is our most traveled forum here. If you so wish, a simple PM to one of our moderators requesting that they move this thread there will do the job.

AndyArrow · « **Reply #4 on:** October 08, 2009, 01:40:00 am »

Marc,

I just wanted to reiterate what Philly said about not isolating yourself. I know when things start falling apart we tend to fall back on yourselves but really that is the time when we need to look to others for support. If you kind find a support group right away maybe one of the doctors at the clinic can point you towards a therapist you can talk with.

AA

weasel · « **Reply #5 on:** October 08, 2009, 03:31:50 pm »

Hey Marc ,
I know how you feel ...........

It is good you are reaching out .

Often I only pop in here once in awhile or everyday !

As I live in the Ozark Mountains of Missouri , All I can say is I wish you

good health and hope you find the companionship you crave !

I am unable to find it in a town of 57 people

here's to finding new friends for you !

Carl

rabit64 · « **Reply #6 on:** October 09, 2009, 02:07:29 am »

Marc,

I know that as a newly diagnosed I'm not supposed to post here, but your comments moved me. I know that when that old demon depression takes over, you wonder if it is worth it, but it really is mate. Its people like you that give us newbies hope. We think that after diagnosis its all over, but folks like you and the others on here proove it is not. Thanks for being here and keep your chin up, we all need you.

"stay strong, live long and prosper"

Rob

aztecan · « **Reply #7 on:** October 09, 2009, 10:22:59 am »

Hey Marc,

I would like to welcome you. I have 24 years of being positive under my belt and I know just what you mean about those "darker days."

Your mention of going to groups, etc., and getting to know people, only to have them die off, really struck a cord with me. I think I can count on one hand the number of people still around from my early clinic days.

I also, coincidentally, used to live in LA and on the west side. I lived in Santa Monica, although that was a number of years ago.

I agree with the others. Isolating yourself isn't healthy. Continue to reach out here and in the other forums and do attend that support group you mentioned.

I look forward to hearing more from you.

HUGS,

Mark

Sebastian1969 · « **Reply #8 on:** October 09, 2009, 04:34:20 pm »

Marc,
I am probably the last person that is "suppose" to post in here. I am negative, my boyfriend has been positive for 15 years, in which I also feel like a survivor for that time. I would like to let you, and all the people who have lived with this for so long--thank you, thank you for your open dialog, support of eachother and of the communities we live in. Thank you for being a survivor and not giving up, thank you for giving other people hope, especially those that are newly diagonosed, or those friends and families of people with HIV.
Sorry to hear about your job, the economy sucks right now.
My advice on finding people to hang out with, talk to is to start by finding people that are interested in the same things you are, rather that be sports, movies, theater, whatever and go from there. I think it can be helpful to have a support group of people who are also HIV positive, but remember to also have a group of people you care about and that care about you with HIV just being something that come along with being your friend--hope that makes sense.
I hope things turn around for you quickly.

PRMike · « **Reply #9 on:** October 09, 2009, 04:35:59 pm »

Quote from: marc1236 on October 06, 2009, 01:30:07 pm

I've had a hard time of it lately,emotionally and physically. I became detectable 9 months ago after being undectable for over a decade.I was laid off from my job 9 months ago which I had for many years and i lost my health insurance when I lost my job. Survivor mode kicked in and I got free healthcare from a medical clinic that gets donations from private individuals which is on the west side and they have doctors in a department there who only treat hiv and AIDS.They are great ! They are better doctors than the health insurance doctors I use to have.Also I have been getting free hiv meds for many years through ADAP and i still do. The downside is my virus has mutated,which i found out a week ago.The Atriplah I was taking for 3 years does not work in me anymore.They did a geno-type blood test on me and found out about the specific mutation/strain of virus I have now.My doctor put me on some new drugs last week and I feel more energetic.I take 5 pills a day now /twice a day of various hiv drugs on an empty stomach.He said it will be a month before I'll be able to know whether the drugs are working.

The thing is I've isolated myself and have not socialized with anyone in a long time. I'm attempting to get out more.There is a support group I plan to join soon that meets once a week.Though I need a group or friends I can see more than once a week ! I use to go to a variety of support groups for hiv...but the people i grew close to in those groups died. The doctors tell me I could live many more years with hiv and said its a chronic conditionYet my recent blood test results remind me I am still not safe or out of the woods.And that its far from chronic !!! This is my 25th year with hiv and memories of its darker days.
The stress causes such tightness in my neck and skull. Doc gave me some medicine to relax. I try not to take that medicine since it makes me so tired and limp all over my body.I work out at the gym every day and watch my weight. I'm just not sure what will become of me. As for work I look all the time.I do get unemployment money and am on my first extension. I'M REACHING OUT to you and would love to have friends to do things with and LIVE and also I want to join a group for hiv support.I live on the westside by santa Monica And Brentwood and there are NO groups over here.There use to be.

Hi Marc 1236, my name is Mike and i too have been infected for 29 yrs this month, i understand what your going through and i would like you to know that you have a friend in me, I know that it might not help since i live in Florida but i think we still can become friends and e-mail each other. now i must tell you that i'm Hetrosexual but like I said i too am a long term survivor so if you want to be friends it's cool with me..
I do hope that things will be alright for you.. ok take care always mike

iPOZ · « **Reply #10 on:** October 11, 2009, 06:36:39 pm »

Hi Marc,
I'm glad you posted on here! I just want you to know that I'm thinking about you. I wish I was in the Santa Monica area so I could stop by and cheer you up and be there for you. I am in the Chicago area and have been positive for nearly 22 years. I do know how you feel. Whenever I go for my lab-work I am so nervous about what the results will be. I have had low CD4 counts for the last year (under 200) and it really has me scared to death. I just did some lab-work last week and I will find out the results on Wednesday (10/14). I sure hope my CD4 count has gone up!

I just wanted you to know that I'm thinking about you. Please feel free to contact me via email anytime you need someone to talk to. My email address is in my profile. Take care.

Jim

unclespongebob · « **Reply #11 on:** October 12, 2009, 07:34:59 am »

hi marc

marc i have been poz for 5 months now ,but i have been looking for friends to talk to also. i live in ohio and u can email me or u can call me i will let u know that later ,drop me a line

peace and love bobby

lforsyth · « **Reply #12 on:** October 12, 2009, 03:15:53 pm »

I know what your going through to some extent. I was diagnosed in 1986. I used to have a group of friends from work who were positive also but their all gone, so are my friends back in L.A. (I know live in Mesa, AZ). No gay places here as its the second seat of LDS church. My partner and I were only together 2 1/2 years when he died of heart failure suddenly in 01/00, he was only 40 at the time.

My main problem with getting to support groups is that I live 1/2+ hour from Phoenix and have double vision that makes night driving difficult (both eyes surgically straightened but not aligned). Plus getting up early for work means I'm in bed pretty early. I'm going to a counselor near by every other week to keep my spirits up. He's having me read a book called 'Feeling Good' to learn how to control the little voice from the brain.

Still, it would be nice to have a group or someone to do things with on the weekends. Email me anytime and hang in there.

Larry

Dachshund · « **Reply #13 on:** October 12, 2009, 06:56:20 pm »

Quote from: unclespongebob on October 12, 2009, 07:34:59 am

hi marc

marc i have been poz for 5 months now ,but i have been looking for friends to talk to also. i live in ohio and u can email me or u can call me i will let u know that later ,drop me a line

peace and love bobby

Hey bobby, I know you mean well but this forum is for the Long-Term Survivors. Thanks for your cooperation.

Theyer · « **Reply #14 on:** October 15, 2009, 08:46:50 am »

Hello Marc and welcome,
I agree the ups and downs off LT living suck and isolation has certainly been part off my storey. I find this site stimulating and very usefull to my situation.Will post more latter just wanted to make sure I said welcome. Theyer

marc1236 · « **Reply #15 on:** November 06, 2009, 03:32:32 pm »

A month ago my doctor did a geno type blood test on me and found out my hiv virus had mutated.The good news is he instantly put me on new meds,because the Atriplah I was on became resistant in me.So doctor put me on 5 new drugs,to take twice a day. Today o November 6th,2009 I got my newest blood test results that were drawn a week ago.I am now undetectable after Months of being detectable.My new meds are working !

I want to thank all of you for being there for me and supporting my feelings and showing compassion and understanding.I am deeply touched. I realize there will come a time ,possibly,when I will need you,if and when things turn for the worse.But for now I'm doing well.
Marc

Miss Philicia · « **Reply #16 on:** November 06, 2009, 03:41:12 pm »

That's good news -- glad to hear it, Marc.

J.R.E. · « **Reply #17 on:** November 06, 2009, 05:25:21 pm »

Quote from: marc1236 on November 06, 2009, 03:32:32 pm

Today o November 6th,2009 I got my newest blood test results that were drawn a week ago.I am now undetectable after Months of being detectable.My new meds are working !

Marc

Marc, Sorry I didn't respond earlier in this thread. I just got so much going on myself , things can get overwhelming at times.

But I do want to say hello to you and welcome you. And, Congratulations , on getting back to undetectable !! Great news !!!

Take care of yourself----Ray

J.R.E. · « **Reply #18 on:** November 06, 2009, 05:28:37 pm »

Also don't know why my above post came out in your quote, but I can't seem to correct it.

Computers, can't live with em , can't live without them !!

Ray

Theyer · « **Reply #19 on:** November 06, 2009, 06:11:10 pm »

Bob thats Great I hope you go from strength to strength....theyer

Moffie65 · « **Reply #20 on:** November 06, 2009, 07:04:11 pm »

Hey Marc, you ain't getting off that easy, there are still quite a few of us to come out of the woodwork on this forum.

Wow, what a wonderful thread, it's refreshing and heartwarming.

I'm just finishing up my 26th year, and when I read your post, I was relating also. I had drug failure like you about a year ago, and was able to get on the new drugs then. I so much understand the confusion and the insecurity also, I think many of us experience our own horrors at one time or another. Stick around, and enjoy this website, it can really help us to heal through the words and feelings of our brothers and sisters from all over the globe.

We are here when you need.

mewithu · « **Reply #21 on:** November 06, 2009, 08:00:47 pm »

Not everyone gets noticed right away. be patient and people will start coming out of the woodworkyou could say.
I am not doing very well myself right now I have a lot of things physically and mentally that i don't really care to discuss at this point but i am a survivor and i will get through some of these things i am sure as I am sure you will stand tall and get it all together and somehow meet new people and start enjoying life again.

JR

pos2007 · « **Reply #22 on:** November 06, 2009, 08:48:12 pm »

Hey man, congratulations on making it 25 years and attaining undetectability again!

If I make it 25 years, ( I'd be 76) especially given all my other health problems I will call it a SUCCESS story. I hear you on the lonely. Here in the bible thumping holier than everyone belt it feels like people think you are spraying them with plague germs by being in the same town. I really appreciate the 4 friends we have that didn't abandon us after we got sick and were diagnosed. It still makes it a very small world to live in though.

MWCLTonline · « **Reply #23 on:** November 08, 2009, 03:18:33 pm »

Quote from: marc1236 on October 06, 2009, 01:30:07 pm

The thing is I've isolated myself and have not socialized with anyone in a long time. I'm attempting to get out more.There is a support group I plan to join soon that meets once a week.Though I need a group or friends I can see more than once a week ! I use to go to a variety of support groups for hiv...but the people i grew close to in those groups died. The doctors tell me I could live many more years with hiv and said its a chronic conditionYet my recent blood test results remind me I am still not safe or out of the woods.And that its far from chronic !!! This is my 25th year with hiv and memories of its darker days.
The stress causes such tightness in my neck and skull. Doc gave me some medicine to relax. I try not to take that medicine since it makes me so tired and limp all over my body.I work out at the gym every day and watch my weight. I'm just not sure what will become of me. As for work I look all the time.I do get unemployment money and am on my first extension. I'M REACHING OUT to you and would love to have friends to do things with and LIVE and also I want to join a group for hiv support.I live on the westside by santa Monica And Brentwood and there are NO groups over here.There use to be.

“On Coming Home”

“Home is not a place; it is an attitude. It is an attitude which depends on how much we are able to feel at home with ourselves as well as with others. Home is something which happens to a person; homecoming has less to do with geography than it has to do with a sense of personal integrity or inner wholeness.

The most important of all endeavors in life is to come home. The most terrifying of fears is loneliness. It means that one has become a stranger to himself, and consequently, to others. To be lonely is to feel fear, to be forever unsettled, never at rest, in need of more reassurance than life can give.

Someone truly loves us when he brings us home; when he makes us comfortable with ourselves, when he takes from us the strangeness we feel at being who we are. We are loved when we no longer are frightened with ourselves.”

“Dawn Without Darkness” - Anthony Padavano

Greetings Marc, Y"All...

I found the above noted book and passage back when I had graduated from High School and joined the Christian Brothers, for real! although the district I was in wasn't the one that owned & ran the winery!, long before HIV but just in time to deal with my first coming OUT... NTway, it has always rang true and helped guide me on my Journey! As I think abt it now; it comes down to Purpose -above to routinely treat & increase life expectancy, and Passion -what to do now that you have time left. I've been on SSDI since '93 (2 yrs after I tested + and applied for it) and it has and continues to work for me as does Medicare and all its parts. I'm poor but happy, or at least content, and I've been on this road a while now.

The first milestone for me was getting my first computer and access to the internet

! So finding us is a great start; if you don't find any Live groups +/or bodies to interact with locally right away, you can practice and interact with us here!

Now here's the thing; In Aug of '05, feeling the dread of impending old age and AIDS, I gave up my Sct8 apt and moved in w/ a GWSM friend who had bought a house that I helped him move into and fix-up that ended up w/ me being thrown out on the streets over the '05-6 winter! I then bounced between a brother and some friends and finally ended up where I am in Spr '06 determined that I'd shed all my bad friends and influences and never be homeless again for the rest of my life

... So I've been out of the loop for awhile as well!

I've been an activist, advocate, posterboy, writer, web designer, ...but mostly just an old retired fart lately. But now that I'm gonna Live! what gives me the most pleasure is writing and sharing my experiences -in person, print or online... Hope this helps!

"Coming OUT of Hiding: A Retrospective Journey Through AIDS..."
A Memoir * Michael W. Connett

"This story is about my most important endeavor in life. To experience that greatest love of all; to truly love myself, to shed the strangeness I feel at being who I am and to no longer be frightened with myself. This is my attempt to finally get myself home before I die. Much of the strangeness and the fear I’ve felt has been the result of the beliefs, words and actions of the people around me. Naturally, the most important and influential of those has been my family. I’ve never really felt at home with them because I’ve always been a stranger to them. Now, I think I understand why and that there was never any malice intended. But the hurt and pain have been real. They need to understand that, and how it has affected my life. They also need to know that that understanding is my only motive; because if they understand me and my life, maybe they’ll finally love me enough to bring me home..."

Y'All take care...,
Michael
"HIV is something you live with every day for the rest of your life. You may never die of it, but you always die with it..."

http://mwcltonline.spaces.live.com/blog/cns!475412487967479F!1520.entry[/u]]http://mwcltonline.spaces.live.com/blog/cns!475412487967479F!1520.entry[/color]

MWCLTonline · « **Reply #24 on:** November 10, 2009, 06:27:11 pm »

Greetings Y'All, Hi marc!
Thanks for your reply

YW

!

"As I think abt it now; it comes down to Purpose -above to routinely treat & increase life expectancy, and Passion -what to do now that you have time left. But now that I'm gonna Live! what gives me the most pleasure is writing and sharing my experiences -in person, print or online..."

Quote from: MWCLTonline on November 10, 2009, 04:45:36 pm

U Like Me!! got this bite today: "I admire you.You responded to a post of mine in this forum and you told me about your life and all that youve been through.I'm sorry it took me this long to respond. I felt strength from your posting.It helped bring out my inner strength and to not give up because there's always hope.I believe God gives me what I can handle.Still its hard for me sometimes to get on with my life.I get scared of the unknown and the known. Again thank you for sharing your lifes experience."

"We wander but in the end there is always a certain peace in being what one is, in being that completely. The condemned man has that joy." Ugo Betti
"You know more than you think you do." -Benjamin Spock
"Not admitting a mistake is a bigger mistake." -Robert Half
"Nobody can be successful if he doesn't love his work, love his job." -David Sarnoff

Pisces
You have an unusual gift for making a situation seem less dramatic, dear Pisces. Today, you will witness crises of all kinds. You will be the one who reassures people and who is able to sum up the situation objectively without panicking or exaggerating. This, coupled with your legendary calm, makes for a great combination!
The normal routine of your day will be disrupted early on by someone who needs your help with something entertaining. Turns out, they will end up giving you some help too, although you might not understand just how to ask them for it yet. In a business negotiation, your creativity will enable you to get what you want without sacrificing any of your hard-earned resources. If you make it clear that you are not willing to compromise, you must stand behind that statement.
**********************************************************************************
Ugo Betti made my day as I began and have, for the most part, continued My Journey feeling like the proberbial Dead man walking... But once you experience that certain peace and joy you can draw on it to help you just keep Living! even though your dreams be tossed & blown...
Walk on, Y'All!
Michael
[/url]http://hivchat.ning.com/profile/MichaelConnettakaMWCLTonline[url]

Thx for validating (although it didn't necessarily depend on it

!) my Mission and fueling my Passion!

beau1200 · « **Reply #25 on:** November 16, 2009, 02:14:13 am »

Sounds like you are getting a good bit of advice. I am in Atlanta, and I totally understand what you mean. I stopped working in Nov 2007. I have become unmotivated, and just can't leave my place. I try to schedule things with friends to help get myself out. I am single and realize that I won't meet anyone if I don't get out of my house. Even if it means just going to the local "gay" starbucks and sitting with friends, I have to plan so that I am somewhat obligated. It is really hard to stay motivated. Any other ideas, please share!
Wish I was closer to you, we could help each other.
Best Wishes!!

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Author Topic: My 25th Year With Hiv And It Sucks !!!!!!!!!! Seeking Friends And Support ! (Read 11962 times)