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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aries321 on June 17, 2007, 03:18:45 pm

Title: Long Term Survivor/Newbie??
Post by: aries321 on June 17, 2007, 03:18:45 pm
I am unsure if I would be considered a Long Term Survivor -or- not. I am probably more of a coward than a survivor.  I spent the last few years hiding and not fighting.

I tested hiv postive in 1990, when I was 19 after my first experience with another male.  Since then I felt like damaged goods and was just waiting for it all to end.

I have never taken any medicine.  I dont have a doctor. Dont know my CD4 or viral load.  I wish I had found this site alot sooner. Forgive my ignorance, but to see an entire community of people like me is uplifitng.  I have been in a state of  extreme dispression the last 17 years.

Each year another birthday would pass and I would wonder why am I still here?? Was I some sort of freakshow to still be alive?? I lived a private HELL wondering when it was going to happen or how it was going to happen.

I have become a loner and distance myself from family/friends.  I moved to Atlanta to disappear from everyone.   I work alot of hours to stay busy and come up with excuses when co-workers want to hang out. I have recently become an independant contractor and I am even more alone.

I didnt want to be burden to anyone and thought if I died alone no one would miss me. I always prayed for a quick death and nothing prolonged.

Anyways, after reading the stories of so many people on this forum, I am starting to develop a different outlook.

Now, I wonder if it is too late.  After 17 years of not taking any medicine, I  probably have an extremely damaged immune system.  I dont know where to even start.  I became an independant contractor 2 years ago.  I dont have insurance because I didnt think an insurance company would accept someone who has had this pre-existing condition for so long.  Unsure of the true cost of medicine but I maybe financially able to handle some of the costs. Again, forgive my ignorance if the costs are extreme.  Just dont know what else I could do to obtain meds.

Sorry for the long post.  This is only the tip of everything I have kept bottled up inside for so many years.

I am sorry that the connection we share is this disease.  I am thankful to have found this community online.  The last 2 days on this site has changed my outlook about myself and my life. Thank you, all.

Title: Re: Long Term Survivor/Newbie??
Post by: Miss Philicia on June 17, 2007, 03:31:15 pm
It's never too late dear friend.  You'll not ever know how or even if your immune system is "damaged" unless you high tail it to a good HIV specialist, and I wholeheartedly encourage you to do so.

The insurance and medication costs could be tricky after going uninsured so long, though you don't give a clue how much your income is.  If it's below a certain level you would qualify for assistance from ADAP (AIDS Drug Assistance Program).  Perhaps a good place to start is for you to register with a local ASO (AIDS Service Organization) so someone experienced in the particulars of Atlanta can assist you.  I know we have some board members from that area so hopefully someone can give you some information on where to go.  Maybe they'll have a local low cost clinic that you could go to for HIV care until you get a regular one sorted out.

Welcome to the board and good luck.
Title: Re: Long Term Survivor/Newbie??
Post by: aztecan on June 17, 2007, 05:59:45 pm
Hey Aries,

Welcome to the forums. Philly has offered some sage advice regarding the ASO in Atlanta. that would be a good first step toward taking control of your life.

I say take control of your life, because I, like you, ignored the entire subject for quite a few years. A friend gave me a swift kick in the butt and got me started, thank goodness. Now I know knowledge is power and just ignoring it could very well lead to a very bad situation.

I would also peruse the lessons here. If you have questions about care, numbers, etc., they can be a great beginning.

Finding a good doctor is also important. The local ASO should be able to help you, even if you aren't eligible for enrollment because of your income.

There are quite a few people here who have been positive more than 20 years, including me, so never count yourself out just because its been a few years since you tested positive.

Anyway, welcome. I'm glad you're here and I hope to read more from you.

HUGS,

Mark
Title: Re: Long Term Survivor/Newbie??
Post by: newbernswiss on June 17, 2007, 06:00:49 pm
Welcome to the family...we were all newbie's at one time or another...now survivor's...keep coming back.
Title: Re: Long Term Survivor/Newbie??
Post by: Robert on June 18, 2007, 01:42:38 am
The last 2 days on this site has changed my outlook about myself and my life. Thank you, all.



I'm glad to hear it.  17 years in depression mode is a long time, especially being so young.  Well it's never too late to start over, so let us help you as much as we can.  You'll have to do most of the hard work yourself, but we're here to help.  You can count on that.

Now you mentioned you were in Atlanta.  According to this  WEB PAGE (http://www.statehealthfacts.org/cgi-bin/healthfacts.cgi?action=profile&category=HIV%2fAIDS&subcategory=AIDS+Drug+Assistance+Program+%28ADAP%29&topic=ADAP+Financial+Eligibility+Criteria&link_category=&link_subcategory=&link_topic=&welcome=0&from=none&area=Georgia) to qualify for ADAP (AIDS Drug Assistance Program) you cannot earn more than 300% of the Federal Poverty Level (FPL) ($9,800 annually for a household of one.  This translates to approximately $29,400/year.  As in independent contractor, you're probably earning more than that, uh?  But I doubt if you'll find any insurance company to cover you, or if you do, you wont be able to afford it. HIV drugs average, at a minimum, $2,000/mo.  As you see, it's a pretty good chunk of change. 

So what Phlly and Mark have told you is right on.  Perhaps there are other financial aid programs in Atlanta that can help you. Or maybe there is a clinic that will draw your blood and give you the results at a low cost.  Talk to your ASO (AIDS Service Organization) and see what is available for you. As you talk to them, don't feel the need to tell them everything.  AS Philly said, we have some very knowledgable members here from Atlanta.  Maybe they'll read this and can help you.

In the meantime, well, at least you've opened up to us.  That's a start.

robert

 
Title: Re: Long Term Survivor/Newbie??
Post by: DanielMark on June 18, 2007, 04:50:54 am
Welcome to the forums, Aries.

There have been times when I wonder why I'm still alive too, but after nearly 19 years I've stopped questioning that. Obviously the doc who told me to go home and prepare to die was wrong, so I’ve chosen to live out the rest of my life to the best of my abilities.

Depression is a bummer (I know)  so it's good to see you've posted. No need to be alone anymore.

Daniel
Title: Re: Long Term Survivor/Newbie??
Post by: redhotmuslbear on June 18, 2007, 09:23:51 am
Aries in da house!!!!!   (9 April here)

I totally feel what you posted.  I hid out in plain view for almost 16 years, largely because of fears surrounding future brain surgeries for a spinal fluid shunt I had 2/80 to 12/94.  Losing several dozen friends by the age of 21 took a heavy toll on me, too, but when I finally dealt with HIV in 98 it was very liberating, and my docs were almost afraid about how diligent I was in being a partner in directing my care.  I hope that you will rally likewise in time.

If you're a long-term survivor and uninsured in ATL, you may want to check out information provided by the AIDS Research Consortium of Atlanta on their website:
http://www.aidsresearchatlanta.org/faq.html (http://www.aidsresearchatlanta.org/faq.html)

They indicate a meds program apart from ADAP available in the area, plus there is the option to become a volunteer research subject, and people like us are in demand.  They will undoubtedly want you to have an outside physician relationship, though.

As for the whole employment and insurance thing..... You didn't indicate your line of work, but I found from being an IT independent contractor and an empoyee of a few consulting firms and "body shops" that being employed by a large firm carries fewer hassles, e.g. not pre-existing condition clauses.... and it's not like you've been treated anyway!

Best,
David
Title: Re: Long Term Survivor/Newbie??
Post by: Andy Velez on June 18, 2007, 02:50:19 pm
Aries, I'm really glad you have found your way to our site and clearly other members feel the same way. Welcome!

Obviously you can't re-write the past. But you do have now. You've already gotten some excellent suggestions. Getting yourself a primary care doctor with whom you can develop a working partnership should be right at the top of your "to do" list. Having your numbers monitored regularly to see where you're at now is essential so you and your doctor can decide whether you need to be on meds or not.

There are other active members from Atlanta who should be able to fill you in on what AIDS service organizations are available in your area. Breaking the isolation you've been in for so long is a huge thing and you've taken a good healthy step by joining us here.

Keep us posted on how it's going as you wend your way. The more you can bring yourself to continue stepping out the better I think you're going to be feeling.

And again, welcome!

Title: Re: Long Term Survivor/Newbie??
Post by: aries321 on July 02, 2007, 12:18:45 pm
Thank you everyone for your responses.

Sorry it has taken me so long to reply.  I am a slight workaholic.

I also received emails from some of you.  One was from someone right here in Atlanta and gave alot of good resources/info.  I would like to respond to the emails but it doesnt provide your email address.

I hope you read this and email me again. 

I have slipped back into depression a few times since last posting.  The only time I dont think about it is when I am working. 

I came close to telling my mother about my health over the weekend but I got chicken. 

I have realized that the cost of medicine is alot more than I thought.  I also earned over the $30k annually for assistance.  I have researched some health insurance providers. I will also meet with some of the ASOs this week to figure it all out.

This may seem strange but coming here makes me feel less alone.  Thanks again everyone.

Title: Re: Long Term Survivor/Newbie??
Post by: Miss Philicia on July 02, 2007, 01:09:52 pm
aries, those are PM's (private messages) not emails.  AIDSmeds requires a posting tally of at least 3 before the "Reply" function becomes available, so after your next post on the forums you should be able to reply to those messages.

Good luck in sorting out the financial aspects of your situation.
Title: Re: Long Term Survivor/Newbie??
Post by: redhotmuslbear on July 02, 2007, 02:14:57 pm
I have slipped back into depression a few times since last posting.  The only time I dont think about it is when I am working. 

Aries,
Adjusting the use of your vocabulary can also make a big difference in how you feel.  While you may have hit blue spots in the last two weeks, thinking about the impact of HIV on your life isn't de facto derpession.

http://www.nimh.nih.gov/publicat/depression.cfm#ptdep1

My psychiatrist....he just does my ADHD meds, I swear, I'm not mental or anything  :) .... calls my bouts of thinking almost obsessively about HIV as a long-term non-progessor or my past drug use or my past partner abuse or my prostituting "over-thinking the past and the future."  I don't become particularly sad or agitated, but rather lost in the complexity of how genetics, behavior, choice, and external forces come together to create the life which I have led and which continues forward.  His use of that phrase particularly hits me hard, as I attempt to practice mindfulness and being fully present in the current moment.

Peace,
David (April 9 in the house!)

Title: Re: Long Term Survivor/Newbie??
Post by: DanielMark on July 02, 2007, 02:19:13 pm
This may seem strange but coming here makes me feel less alone.

That doesn't seem strange to me, Aries. I'm quite sure that's why many of us log in here sometimes – just to connect with others who KNOW what it is to live with HIV.

Daniel
Title: Re: Long Term Survivor/Newbie??
Post by: Ulong on July 02, 2007, 05:30:26 pm
Thanks for the update, Aries. And you didn't "got chicken" about telling your mom this weekend, you're doing a lot right now, piling disclosure on is pretty heavy. You're doing the best you can, one step at a time. Go easy on yourself.
Title: Re: Long Term Survivor/Newbie??
Post by: JDP3 on July 03, 2007, 04:44:57 pm
As today, July 3, is the 12th anniversary of my positive diagnosis, it may well be only appropriate that I'm posting here.  I  just recently found this site and am thus far impressed with the camaraderie and support among the participants, not to mention the wealth of information available here.

I feel that I am a long-term survivor.  I've survived depression, the anguish of burying two partners, kicked a drug habit and lived through an associated 4-year prison sentence, hospital stays, and have experienced many of the side-effects mentioned by others in these forums.  It ain't over yet for this kid!

In spite of the set-backs I've experienced, I'm forging ahead with my life.  I'm in the second year of the best relationship yet.  I've got a mortgage to pay off and dogs to keep me from becoming too serious.  At 28, when I was first diagnosed, I'd have never dreamed that I'd see 40.  Now I'm determined to see 50.

On a regimen of Sustiva, Videx, and Zerit for over 2 years, I've attained an undetectable viral load and my CD4 count has slowly climbed to 387.  This isn't to say that I don't have a "bad hair day" now and then....  aching fatigue and gastro-intestinal troubles have become routine, although still frustrating.  Zoloft and Clonazepam have given me relief from the sleep disorders associated with Sustiva.  The thought of peripheral neuropathy and pancreatitis from the Videx and Zerit combination is constantly at the back of my mind.  Fortunately, this is one side-effect I've had no difficulty with yet.  The meds are working.  I'm tolerating the side effects.  Being 4:20 friendly helps a great deal with them.

Just this morning, I loaded and unloaded over 2,000 lbs. of food by myself for the non-profit organization where I am a program coordinator.  I don't mean to sound Pollyanna-ish at all.  The bad days are bad.  However, I have a greater appreciation for the good days than ever before.  Now, once I post this, I'm going outside to enjoy the feeling of rain falling upon my face.

Regards,
John

Title: Re: Long Term Survivor/Newbie??
Post by: J.R.E. on July 03, 2007, 05:32:54 pm

In spite of the set-backs I've experienced, I'm forging ahead with my life.  I'm in the second year of the best relationship yet.  I've got a mortgage to pay off and dogs to keep me from becoming too serious.  At 28, when I was first diagnosed, I'd have never dreamed that I'd see 40.  Now I'm determined to see 50.


  The bad days are bad.  However, I have a greater appreciation for the good days than ever before.  Now, once I post this, I'm going outside to enjoy the feeling of rain falling upon my face.

Regards,
John



Hey John,

Thanks for sharing, and welcome to the site. And I've got to agree with you, While there are certainly some bad days, I also have much appreciation for those good days ! I was also one of those that at 34, was wondering whether I would make make 40, but here I am at 55. Part of dealing with this is attitude. Sounds like you've got great attitude ! :)


Take care of yourself, continued good health to you, enjoy the rain------Ray
Title: Re: Long Term Survivor/Newbie??
Post by: J.R.E. on July 03, 2007, 05:36:53 pm
Aries,


Just want to say hello and welcome you to the site also !! Thanks for the introduction !!


All the best---------Ray
Title: Re: Long Term Survivor/Newbie??
Post by: Bucko on July 03, 2007, 05:55:33 pm
Hey Aries-

Keep your appointments and keep us informed. We honestly do care.

Brent
(Who hopes Aries posts three times to be able to respond to PMs)
Title: Re: Long Term Survivor/Newbie??
Post by: JDP3 on July 03, 2007, 10:00:05 pm
Ray,

Thanks for the warm welcome... and I highly recommend standing out in a thunderstorm like an absolute idiot.  It felt great.

Relentlessly,
John
Title: Re: Long Term Survivor/Newbie??
Post by: J.R.E. on July 04, 2007, 07:24:05 am
Ray,

Thanks for the warm welcome... and I highly recommend standing out in a thunderstorm like an absolute idiot.  It felt great.

Relentlessly,
John

 :)  I love being out in a thunderstorm ! The rainy season has begun here in Florida. As soon as the hair stands up on the arms,...it's time to get indoors.  :o


Take care ----Ray
Title: Re: Long Term Survivor/Newbie??
Post by: BT65 on July 04, 2007, 09:47:09 pm
Hey Aries:
  Welcome to the forums.  These people on these forums are sometimes the only factor that keeps me from becoming morbidly depressed.  Please see a doctor and start treating this.  It's not too late as long as you're breathing.
Title: Re: Long Term Survivor/Newbie??
Post by: aries321 on July 09, 2007, 09:37:34 pm
My third post.  Hopefully, I have graduated and can now respond to PMs.

I logged on to the mentor site and may have found a mentor right here in Atlanta.

We haven't met yet. Just responded back and forth on the site. 

I am excited about meeting another person dealing with this same issue.

I have been a loner for so long, it would be great to have someone to talk to.  Also, I hope he can help guide me on all the where, when, why, and who questions about Atlanta ASOs

RedMuscleBear (my aries brother) thanks for all the helpful links to websites.

By the way, did everyone hear the story about the young boy denied access to a community pool because he was positive?










Title: Re: Long Term Survivor/Newbie??
Post by: cocoboogie on September 01, 2007, 08:36:24 am
hey aries,

like you i became posivtive at 20, i'm now 36 and live in Atlanta also.

Only differnce, I never got very depressed about it.  I have been in denial, though.  I live everyday like any other person. 

My view is everybody has something to deal with.  This just happens to be mine.

Your post really touched me because of your depression and being a loner.

I am a hard worker also.  I am a real estate agent and can relate to always working but it also allows me to interact with some many people.

I think you need to get out meet more people. If you want I would love to meet you.

I have been bad about not seeing a doctor, also. Part of the denial and thinking everything was ok. After a biopsy,   I was recently told by a foot doctor that I have KS.  It was a wake up call for me.  I have made an appoitment to see doctor next week.

Please respond if you have any interest in meeting. 

Title: Re: Long Term Survivor/Newbie??
Post by: buca45 on September 02, 2007, 01:55:08 pm
Thank you for sharing your story Aries....it touched me in a way as i too went for years without really knowing what direction to take. It was hard to accept and then finally actually getting myself medical help. Had it not been for a hepatitus A diagnosis years into my infection, I woundn't even have known that i had been exposed.
I also went through depression and had some serious anxiety attacks in dealing with this disease. It only added to a long list of things I had to deal with in my life. Only now, 16+ years into it am I 'comfortable' with dealing with the whole thing and making the best of it.
One of the hardest things for me to do was to disclose my status to anyone. Of course my partner at the time was the first to know and didnt take it too well. Our relationship of 15 years was distroyed because of it although we now are better friends seperated. He now takes interest in my health and is concerned about me.
The second person I told of my status was my now partner of 10 years. I told him roughly 10 minutes into our first conversation and expecte him to run away. Instead, he opened his arms and his life for me and encouraged me to seek medical attention. During my first visits to doctors and specialists, he was always been by my side. During our first year together, he had me added to his insurance offered through his work and I have been fortunate to have this benefit as my treatment costs have, in some cases, been far more than my yearly income!
My advice to you is to take it slowly...definately get the medical help you require (and yes, there is always a way of obtaining such help) as soon as possible, but as far as disclosing your status, tread carefully. Decide who you want to tell and why their knowing would make a difference. Sadly, even in this day of having so many treatment options, there are those you are involved with who may not accept your condition. For those who have a problem with you positive status, just remember, it is their problem and not yours. Be ready for varied levels of acceptance....of course there will be those who accept and assist you in dealing with this. These are the valuable people in your life. Again, those who are not as accepting are losing out.  Just by reading your heartfelt postings show that you are a wonderful, compassionate person who I would be happy to call a friend.
Best of luck with all you do and I hope you find a better happier place as you battle along with the rest of us!! keep us informed and as you know, this board is full of  advice and SOME wonderful people.
Come back often and good health to you....
Title: Re: Long Term Survivor/Newbie??
Post by: dbmathews on September 05, 2007, 10:57:49 pm
I believe we all gather strength from one another in our collective battle with HIV/AIDS.  For me, knowing that I am not alone helps tremendously.

There are some days (weeks even) when "life happens" to (or around) me and I have to sit down and take a rather deep breath...

So I take my deep breath and count to 10, then stand back up and continue to run, although slower these days.

Just finished a 4 day run of IV antibiotics with a pic line and a wonderful portable pump in a rather large and obnoxious bright blue fanny pack.  Apparently I picked up a staph infection at my last outpatient procedure.  All I will say here is...  LOL  it involved a drug induced sleep, a long hose of some kind, and the removal of some precancerous polyps.  Anal pap smears rule!  Oh shit, did I say that outloud?

But seriously though folks, a big hug and many thanks to all of you for helping me keep the faith.