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Author Topic: What do you wish you had been told/asked?  (Read 8775 times)

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Offline proudphoenix

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What do you wish you had been told/asked?
« on: January 17, 2007, 11:48:13 AM »
I've got a question for everyone who was diagnosed with HIV, say, at least a year ago. But first, I guess I should introduce myself....

I'm a social worker, and since September, I've been doing brief case management for people who are newly diagnosed with HIV here in Wake County, North Carolina, US. I work with clients during the first days, weeks, and months after they get the news.

So now my question:

Looking back on your first days, weeks, and months after being diagnosed, what do you wish your service providers had told you?

And what do you wish they had asked you?

Thanks for your input.

Brian

Offline ACinKC

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Re: What do you wish you had been told/asked?
« Reply #1 on: January 17, 2007, 11:59:32 AM »
GO TO AIDSMEDS and POZ.COM NOW!!!!

I wish they had asked my permission to tell my wife of my diagnoses instead of calling her and telling her.  I wish my therapist at the time wouldnt have blurted out my status in a group setting.

Other than that.... it went pretty good.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline jack

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Re: What do you wish you had been told/asked?
« Reply #2 on: January 17, 2007, 12:04:16 PM »
they called your wife? I dont understand that. I would be very,very pissed. who called your wife?

Offline ACinKC

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Re: What do you wish you had been told/asked?
« Reply #3 on: January 17, 2007, 12:16:54 PM »
State of Kansas called the wife.  They were looking for me as part of the "ok so who did you fuck" routine.  My wife answered (we were seperated at the time) and she demanded they tell her because she was pregnant.  ( she was pregnant from invitro fertilization and I was tested for ALL std's including HIV during that process and could not have infected her.) SO, he told her! 

I was within a hairs breath of suing the state at this point.  I had not come out to my family and what better way than with a big fat lawsuit!!!  But, I have a big heart, and I figured that if I sued them it may take money AWAY from the people who NEED the services that department provides.  It was a case manager at the AIDS/HIV thingy in the county government or state i cant remember.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline thunter34

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Re: What do you wish you had been told/asked?
« Reply #4 on: January 17, 2007, 12:35:55 PM »
Case Management was the weakest link in the chain with the ASO in Atlanta.  I pretty much had to go find out things all by myself.  To be honest, I wondered what exactly they did in the building- other than stamp & sign things or occasionally run off copies of stuff. 

What I most would have wanted was a point-blank discussion of all things financial surrounding this.  Long-term disability, short-term disability, food stamps, insurance, etc.  Which things do I qualify for?  What are the requirements and restrictions of each?  What are the ramifications of applying?  Not applying?  I would have liked to go step by step through these things so I could map out in my mind in advance when and/or if I would want to take advantage of any of these options. 

I still would like that, actually.  I got pills and doctor visits, but I found out about things like dental and mental health etc all on my own.  Didn't even see or hear from my case manager for about a year or so.  I've barely had any real explanation of these other things to date.
« Last Edit: January 17, 2007, 12:39:05 PM by thunter34 »
AIDS isn't for sissies.

Offline woodshere

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Re: What do you wish you had been told/asked?
« Reply #5 on: January 17, 2007, 12:51:57 PM »
Brian,

When my Dr. (who happens to be gay) called me at work and told me i was positive, the only thing he said was that they would make a referral to an ID doctor.  That was it.  I think it would have been nice for my Dr to have scheduled an appointment for me to come in to get my results when I had all the blood drawn for my physical.  At that appt. he could have told me I was positive and then let me know local services and resources available.

Fortunately I had made a plan in case my test was positive.  I had a list of phone numbers to call and HIV/AIDS service contact people. Within the first 3 hours I had spoken with 4 different people and made conact with a couple of the agencies.  After that I was pretty much on my own.  Thank goodness for the internet.

I did eventually make contact with a case manager at the AIDS Resource Center and was told since I had a job, a place to live and good insurance there really wasn't much they could do for me.  I wish they had least met with me and told me what would be available if I lost my job and/or insurance.

Good luck,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Online bocker3

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Re: What do you wish you had been told/asked?
« Reply #6 on: January 17, 2007, 12:56:39 PM »
Well, I've had no experience with Case Managers -- I've discovered most things on my own (not a recommendation to others, but it was my reality).

There was one piece of information that was given to me by the "testing coordinator" at the clinic where I got tested for which I am eternally grateful.  That was the name of a counselor who was very experienced with HIV -- he was absolutely critical to my maintaining sanity in those early days, weeks and months.  His help in this regards allowed me to figure out all the "other stuff" -- financial, insurance, doctors, etc.

It's hard to focus on anything within "reality" if your sanity is in question.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
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Current Labs
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Offline Christine

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Re: What do you wish you had been told/asked?
« Reply #7 on: January 17, 2007, 01:27:53 PM »
I was told at Planned Parenthood, and they were very kind and compassionate...at least the part I can remember.

After hearing your test results were positive, I don't actually remember much of the next three hours.

They did set me up with an appointment with a social worker at the hospital, where I then made an appointment with the ID doctor.

As thunter said, financial info, preferably in writing, because it is hard to remember all of that stuff.

Info on what to expect at the first doctor appointment. Info on support groups, what the ASO can offer.

Talk about disclosure issues.

That's all I can think of for now. Hope this helps.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline ChaplinGuy

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Re: What do you wish you had been told/asked?
« Reply #8 on: January 17, 2007, 02:40:22 PM »

Honestly, I wish that someone had just hugged me. Anyone. The whole thing after my results came back - from the clinician to the doctors that did my confirmation blood work - were so ... formal. And one of them kept saying "people are living longer with drugs," which I did not want to hear. I just wanted someone, again anyone, to say "it's going to be okay" without a bunch of legally dictated language about steps to take now that you're positive.

If I had to get really specific, I'd say having someone who spoke clearly and who responded with questions (ie, "do you have anyone to talk to," "do you live alone," "is your family here"?) would be the biggest thing. I was given results, and the guy (who barely spoke English and didn't seem to know the answers to my questions nor was he able to handle my screaming) just kind of left me to cry it out. And I felt like they were waiting for me to leave the room for their next patient - I felt rushed.

Fortunately, I do have a lot of good people in my life who just wrapped themselves around me and helped me through those first few days. I can't say that the District of Columbia did anything with regards to follow-up or contacting past partners - which at the time, I appreciated for privacy reasons but looking back now feel like it's no wonder this city has the nation's highest infection rates. (Good 'ol hold overs from the lazy Marion Barry days.)

Offline indyguy

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Re: What do you wish you had been told/asked?
« Reply #9 on: January 17, 2007, 03:01:59 PM »
I agree with chaplinguy I felt like they were going to put a number on me or take me to jail if i did not give them the names of people I had been with. They want everyone to get tested then they treat you like a criminal asking you all these fucking questions about your lifestyle, who,what where and when you were with someone. I have gotten tested every 6 months because I wanted to know and not spread this to someone else. After I got a test for stds the health department people sat me down with 2 females asking all kinds of questions about my sex life. I very nicely told both of them to go fuck themselves and left the room. TREAT THE PERSON NOT THE DESEASE.  No hugs,no handshakes and no friendly face. And people want to know why people are not getting tested. Find a cure because no one is going to stop it.
Meds doing well so far.

Offline marco23

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Re: What do you wish you had been told/asked?
« Reply #10 on: January 17, 2007, 03:29:23 PM »
I had worked at a Med Lab when I found out..all employees always had to have blood work every six months..but I had asked for HIV to be included..supervisor recvd the results, she called me on a Saturday morning to inform me..Monday at work, she strongly suggested I tell everyone in the office, being in shock - I agreed and told everyone...this was back in 93, that was handled so inappropriately but back then, I didn't know any better. I had to go out and look for Dr's and counseling on my own...to be honest..none of the counselors help me. The three different counselors I saw, all three couldn't believe I wasn't promiscuous -which I wasn't, I was only with my BF at the time and no one else...
Maybe counselors are different these days...all I can suggest is to offer all the info possible AND definitely lead new people testing poz to support groups!...Support is so important. Talking one on one, face to face, emotions to emotions...is a wonderful support...
Don't hide your hurt, pain and feelings inside..for they will harden your heart.

Offline poet

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Re: What do you wish you had been told/asked?
« Reply #11 on: January 17, 2007, 03:36:24 PM »
Looking back on your first days, weeks, and months after being diagnosed, what do you wish your service providers had told you?

And what do you wish they had asked you?

For, hopefully, perspective: 1986.  I received the news over the phone at work from a walk-in clinic which I had gone to because the town's health dept. which supposedly was just starting hiv testing had given me the wrong day and time.  So there were no service providers, period.  There was also a mindset among the brightest in NYC that I had had a bad case of the flu given my symptoms (of acute retroviral syndrome). 

Everything I came to kinow came from print, predating the internet.  So what I would want for myself or anyone else now is exactly what was posted earlier: directions to poz.com and aidsmeds.com  Any question answered.  A wide amount of options, roads taken and the reasons for them.  The tools, in other words, from which someone newly diagnosed learns how to think about his or her infection, rather than how to make an appointment and do/think what he or she is being told.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Eldon

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Re: What do you wish you had been told/asked?
« Reply #12 on: January 17, 2007, 08:07:22 PM »


To answer your question...EDUCATION.
« Last Edit: January 17, 2007, 08:36:30 PM by Eldon »

Offline Longislander

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Re: What do you wish you had been told/asked?
« Reply #13 on: January 17, 2007, 08:34:14 PM »
I wish they had referred me DIRECTLY to this website. I found it by complete accident 10 months after Dx.

All I wanted was someone to talk to (therapist/psych), and they had a mental health dept. there.  But because I had health insurance, I wasn't allowed to see their people. I was walking around in a daze for weeks, and they left it up to me to find a competent therapist thru my insurer. Gee, lots of assistance there! I could barely find my car. I was quite depressed, and got through it on my own living room couch in the ensuing months.

I hope after reading these replies, you can make a difference in the lives you touch.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline SoSadTooBad

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Re: What do you wish you had been told/asked?
« Reply #14 on: January 17, 2007, 08:34:52 PM »
I got my results at GMHC here in NY.  A HUGE mistake.  While I appreciated the fact that they offered the service - at no charge, even - Once you get the results, you are left with a pamphlet and a few phone numbers.  The counselors act afraid to tell you anything - no words of encouragement, no perspective on what the next few weeks might hold - really nothing more than the results and some pop psychology.  

If I had it to do again, I would have gone to my doctor for the test - because he had to do the tests again anyway to confirm and he got my first set of CD4 counts at the same time that he got the results back.  The doctor gave me a very good perspective on prognosis, next steps and recommended a fantastic ID specialist.  

He made me feel like it was not the end of the world, and he was able to provide me with a lot more specifics about what the process would be like, and what my chances were for a reasonable life after diagnosis.  

In short - I wish I had been told:

1.  It is not the end of the world, and it happens to all types of people in all walks of life

2.  This is a monumental challenge for you, but it does not have to consume your entire life

3.  There are many good treatment options, and there are lots of people who respond very well to the treatments.

4.  This is not a medical emergency, per se.  You will not die in your sleep tonight, and every little ache and pain you get is not a sign of impending doom.  (This one depends on the specific circumstances.)

5.  There are lots of good resources online to read - poz.com and thebody.com - check those out and you will learn about a lot of great people who have not let an HIV or AIDS diagnosis stop them from living productive lives.

6.  Your most pressing challenge may be a financial one - the treatment, labs and doctor visits are frequent and costly.  You need to think about your financial priorities as you begin this journey.  (I am fortunate to have private insurance, but there is still a financial bite with the co-pays... and for people without insurance, this is perhaps the most pressing issue to deal with.)

7.  Do not make any large personal or financial decisions for a while if possible, your judgement and perspective may be somewhat clouded by your diagnosis.

...and finally, I wish they had told me that contracting HIV was not a personal failure.   Because it sure as shit felt like one.

I am 8 months into my diagnosis, so these thoughts are very fresh - sorry for the rambling post.  As a final thought, I learned all of the above from the people that post on this forum.  Without the support I get here, I would probably have spent my 401(k) on booze and walked in front of a bus.    

Offline Tucsonwoody

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Re: What do you wish you had been told/asked?
« Reply #15 on: January 17, 2007, 08:54:05 PM »
I have been among the lucky ones it sounds like and I am so sorry to hear of the terrible experience some of you have had to deal with.  For me, I was really sick when diagnosed last fall and the doctor I had then did not diagnose me right for 3 weeks.  I went to an emergency room and was admitted and it was there that I got lucky.

The hospital case worker contacted the local ASO and they sent someone over to just talk to me about what was available and what did I need and gave me the name of a good ID doctor (who I switched to).  That doctor is part of a clinic that includes a therapist, nutritionist and pharmacist and you don't even have to pay to see them.  I would suggest that really emphasising the importance of taking advantage of all that help is important since many like me are reluctant to do that.

Another thing that I would advise (and this may vary from patient to patient, depending on their mental wellbeing) but I had to ask just how sick I was and if I could die from the PCP and other things I had.  It took me awhile before I realized how bad it was and I think it would have helped me if someone had come right out and said to me from the start how close I was to never getting out of that hospital alive.  Finally someone who didn't know I had PCP said to me that it was the number one killer of people who went to that clinic and that's when I started asking the doctors just how bad it was.

One last idea - is to lay out what the timeline is going to be over the next 6 months to a year as much as possible.  When certain tests will be done and why, when treatments will begin, how often followup visits with the doctor might occur.  Also agree that referral to websites like this would help.  I found out about 2 months after I got out of the hospital that the clinic even has a nifty brochure available that lists a bunch of resources including aidsmeds.com...and I learned that from the nutritionist! :)

Hope that helps some.
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline tsw923

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Re: What do you wish you had been told/asked?
« Reply #16 on: January 17, 2007, 09:50:37 PM »
After reading the posts here I guess my experience was not so bad.  What I thought went well:

1.  My doctor called me personally with the results
2.  He assured me that I wasn't going to die tomorrow
3.  He urged me to find someone I could confide in
4.  He explained the next steps (testing for resistance, meds, etc.)
5.  He got me to a GYN who was familiar w/ HIV + patients to get the 'well woman visit'
6.  He assured me that I was not a bad/horrible person and that he didn't see me that way

What could have been done better:

1.  Specifically refer me to this site and/or body.org.  I was told to 'surf the net' to find info
2.  Give me the number to ASO resources -- I just got the number at my last appointment 2 weeks ago, but I was diagnosed in August 2006.
3.  More detailed pamphlets about HIV and diagnosis and treatment.  I think the ones I got
were on a 3rd grade level.... 'This is HIV.  This is your TD4 cell.... This is what happens when they meet....'

Hope this helps,

TSW
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline Life

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Re: What do you wish you had been told/asked?
« Reply #17 on: January 17, 2007, 09:59:48 PM »
I hate the middle men so much in my life, I bypassed all of that... Found an excellant ID doc through my gay doc and never had to use that service for anything.... yet...

Offline Miss Philicia

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Re: What do you wish you had been told/asked?
« Reply #18 on: January 17, 2007, 10:32:09 PM »
When I was diagnosed 14 years ago I had a decent paying job with good health insurance, etc. and my doctor who tested me was gay and an infectious disease specialist.  So I just kind of lucked out on that front straight away.  I don't recall being directed to any ASO but I knew GMHC existed as I'd done the fundraising AIDSwalk thing previously.  I guess I just didn't have a need for any services then, but I did go to a support group during that first year but it wasn't through GMHC, forget who did it.

I actually encourage everyone to go to a local support group when diagnosed.  Yes, the internet and these forums are good but EVERYONE needs to assume some personal resposibility and put yourself in a place where you can ask others about questions of available resources on a LOCAL level.  This is the only way to make sure that information you receive from an ASO is accurate.  I've often been given incorrect information by case managers.  It used to piss me off but I've encountered this now in two cities I think it's just part of the bargain.

I think you'll find that unless you're situation is really dire when diagnosed (no insurance, broke, homeless) you won't get as much attention.  It's kind of like battlefield triage!  There are only so many resources available.  And while it would be nice to think the case manager is going to provide a hug and shoulder to cry on I'm sure providing on the spot psychiatric care is unrealistic, and you know that's where it would all lead to.  Sorry if that sounds cold.  Just saying.  I've actually found most case managers warm up to a point, and I've even had one hug me though and frankly I didn't really need the hug at the time but I guess he thought I was a mess or something.
"Ive slept with enough men to know that Im not gay"

Offline Queen Tokelove

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Re: What do you wish you had been told/asked?
« Reply #19 on: January 17, 2007, 11:35:37 PM »
I really had no problems from the Health Dept. I kinda had the feeling that it was poz so I never went back but they found me. They talked with me and also helped me to get in with the ASO, I'm with now. As far as the ASO, they are great, although I do miss my original case manager, he died in a plane crash.

Since then I kinda have a problem with my new case manager. I rarely see her and when I do have a problem, she tries to help but I think that because she is not from this area, she doesn't know what's available. If I want to know something, I usually bypass her and talk to the receptionist or the clinic nurse. I don't want to complain about her performance for a few reasons, mainly being, I don't want to get her fired. Even though she has not been much help to me, she might be to someone else.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
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Offline Strayboy74

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Re: What do you wish you had been told/asked?
« Reply #20 on: January 18, 2007, 02:10:25 AM »
I found this board shortly after my diagnosis (12/04).  Thank god.

I wish someone had told me more about support groups to deal with coping.

I was terribly lost and scared.

-joseph

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #21 on: January 18, 2007, 07:44:41 AM »
Thanks, everyone, for your replies. I hope to post more a little later, following up on your messages individually, but for now, I just want to say that I appreciate all of your comments.

Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #22 on: January 18, 2007, 08:27:29 AM »
ACinKC,

Well, I'm glad to hear that things went pretty well other than what you mentioned. It's bad enough having to deal with someone violating your confidentiality, blurting out your status to others.

Thanks for mentioning the websites. I've referred some of my clients here. Hopefully, some of those people who don't want to disclose to others (at least not at this point) and who feel isolated in their everyday lives will take advantage of the support and connectedness that's available here.   

Brian




Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #23 on: January 18, 2007, 08:38:32 AM »
thunter34,

Gee, if I didn't hear from a case manager for about a year, I'd wonder what they did there, too!

You mentioned the ramifications of applying and not applying for various financial things. Could you say a little more about what you were thinking of there (perhaps include an example)?

Brian

Offline skeebo1969

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Re: What do you wish you had been told/asked?
« Reply #24 on: January 18, 2007, 09:11:58 AM »


   I was tested at the Health Department in Florida.   I think I had a new hire give me my diagnosis.   Here is how it went:

   September  7, 2005 I sat in the clinics waiting room.  I was there very early and I remember there were a few people before me.  I remember seeing one guy leave and he was very upset, obviously had gotten some bad news!  As I sat there I noticed one of the workers picked up a file and she looked at it with a concerned look on her face, which was probably my paranoia more than anything else.  I remember she got on the phone and then abruptly left the room.  I thought to myself, " I bet that's my file.".   When she returned she sure enough called my number.   Oh God was I nervous as we walked into this little room together, but I figured I had syphilis to be honest.   She sat down and said my STD panel had come back negative, but that my HIV results were still waiting for a Western Blot result.  "What is that?", I asked and she said,"Don't worry everyone gets one, it's just been delayed because of the hurricane 2 weeks ago.".   I needed to come back the following week to get the results.

    I remember driving home thinking, boy I sure do get a lot of tests for just $15.  When I got home more thoughts crept into my head.  I googled Western Blot and did not like what I read with my eyes.  WTF??!!  Confirmatory test??!!

   My friend went back with me on September 14 and the same woman called my number.  When we got in the room I told her, " I know I am positive." and she said, " Why on earth would you say that?"   Whoa.... UT oh I must not be I thought!!  Then she looked at me and said, " You are.".   She asked me who I had been with and phone numbers.  She called my wife with me sitting there and I told Tina in front of her.  She then took the phone and I remember her telling Tina, " No sweety I don't think people joke about these things."   

   I asked her what do I do now, am I going to die?  She told me she had a friend that lived 9 yrs with it who died recently and she knew a guy that "Looked terrible but is still alive."   She then pointed me towards a door where I thought I would get some more info.  When I opened the door it led out into the back parking lot!

   I found my ASO during a frantic 3 am anxiety ridden call to the CDC..  I did not know who to call.  The girl on the phone felt so bad she gave me a shit load of numbers to call in the morning.  The first one was the ASO I ended up using.

   I was fortunate though... The ASO was great in my opinion!  They had me come in and because I was not taking it well had me talk with 5 different people.. including the intake person.   They had me with a therapist within an hour of my first visit.  They all hugged me and reassured me that nothing was going to happen to me.   A month later the therapist had me Baker Acted and it was not till then that I decided enough was enough... well actually it took place at a cross walk in Downtown Miami.   This lady looked at me, barefoot and disheveled was I and grabbed her purse tightly...  I knew then I did not want my life to continue spiraling downward. 

  I know your question was more in line of what my case worker did for me, but it really had to do with the whole darn faculty at the ASO to be honest; even the receptionist called me by name as soon as I would walk through the front door.   The doctor there will be on my Christmas card mailing list for life! 

  I think the main thing that they did was treat me like a person should be treated in this predicament.  With sincere respect and concern for my well being.   I also want to mention this ASO has a heavy caseload, but some how made me feel like I was the only patient they had.

  Today I am no longer with them.  I am with an agency that truly shows what the other end of the spectrum has to offer.  I feel bad for any newly diagnosed people at this place.. I can only imagine how they are dealt with and the misinformation they are given.   Last week I had a meeting with the assistant director.  She wants me to shed some light on how I was dealt with in Miami so they can better assist people here.   I've already had an impact on where they draw the blood from patients which was being done in front of non posies.. No longer, it will be a separate room and one patient at a time.  I accomplished this by telling the director that people being tested should not have to have a pregnant woman there staring at them as they have their blood taken.. it is already a nerve racking experience as it is.

  My clinic that I go to now serves the whole community by the way, not just us positive folks..

  I apologize phoenix I do realize I got a little off topic.. I tend to do that sometimes.  I guess in short we just like to be treated fairly and given good information.  So if you are new to this, educate yourself as much as possible!  It really goes along way! :)

  Regards,

  Thomas

 

 
I despise the song Love is in the Air, you should too.

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #25 on: January 18, 2007, 05:20:51 PM »
woodshere,

Yeah, I really wonder how many people would prefer being told of their diagnosis over the phone as opposed to in person. It's much easier for me to understand people preferring to be told such news in person.

Good for you ... that you "took the bull by the horns," made a plan and carrried it out (though I wouldn't want poz folks to feel like they're only going to get their needs met if they do all the work alone to make it happen).

I'm happy that I can say that I make my services available to everyone whom I learn about being diagnosed with HIV in my county, regardless of whether they have a home/good insurance/job. So far, I've found that some clients find it helpful even if "all" that they get is some good listening and emotional support.     

Thanks,
Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #26 on: January 18, 2007, 05:27:56 PM »
bocker3,

I'm impressed by how you and others here seem to have found so many things (including your sanity  ;)), as you largely fended for yourselves after getting the news.

Brian

Offline J.R.E.

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Re: What do you wish you had been told/asked?
« Reply #27 on: January 18, 2007, 05:31:26 PM »

When The nurse Practioner, walked into the room ( now this was back in 1985, at a public health clinic in Florida)) she handed me the paperwork, containing the positive dianosis, handed me a couple pamphlets, and backed away from me, as if she was going to catch HIV from me, just by talking to me. I remember that very well. She was in a hurry to get me the hell out. I guess back then, what could they tell you?....


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #28 on: January 18, 2007, 05:35:55 PM »
Christine,

Yes, that does help; thanks. I've given my clients some general reading material in the past, and it had already occurred to me that all of the information and ideas that we discuss when we get together can time a fair amount of time to absorb; but I hadn't really thought about how giving some information (such as the financial stuff) to people in writing, along with discussing it, could be so valuable, given the sort of cognitive state that they might be in when we meet. So now I'll be thinking about which information exactly to provide that way.

Brian  




Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #29 on: January 18, 2007, 05:47:59 PM »
ChaplinGuy,

Ah, yes ... I was wondering when someone would bring up the emotional support angle--the idea of receiving a response from the heart, rather than simply receiving information. I think there's a real art to providing emotional support and a sense of "realistic" reassurance (as opposed to false hope) ... to helping a person "feel hugged" even if one doesn't actually hug him or her.

I'm glad you got that comfort from someone, even if it wasn't from "the system."

Brian

Offline thunter34

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Re: What do you wish you had been told/asked?
« Reply #30 on: January 18, 2007, 05:49:11 PM »
thunter34,

Gee, if I didn't hear from a case manager for about a year, I'd wonder what they did there, too!

You mentioned the ramifications of applying and not applying for various financial things. Could you say a little more about what you were thinking of there (perhaps include an example)?

Brian



I would want to hear from a Case Manager:

You qualify for x amount of food stamp assistance if your income is x amount or less.

You qualify for x amount of short-term (or long-term) disability based on these criteria and income limits.

That sort of thing.  As for ramifications, I guess I would mean something like this:  Suppose one is too ill to work for quite some time and decides to apply for long-term disability.  If this person later feels well enough to work, will having applied for LT disability previously have any sort of negative impact on hireability?  If rehired (and thus taken off LT disability), will this return to work negatively effect the ability to get the disability again if needed?  With HIV, sometimes your health can take rather sudden turns for better or worse.  It can be hard to guage with certainty whether one is down for the count workwise or not.  I guess a frank discussion of a game plan for when to figure in disability if it seems it might be needed.  I guess if my phrasing of the questions are vague, it is because my concepts of the whole disability subject is vague.  So I guess that is it:  I would want a frank, point by point discussion (with written information to take home for future reference) of short and long term disability...what it's for, when is best to consider it, when to try to hold off, how & where to apply, what type of benefit to expect based on work history or other circumstances and what (if any) negative consequences might result from applying.

Hope that helps.
« Last Edit: January 18, 2007, 05:51:32 PM by thunter34 »
AIDS isn't for sissies.

Offline racingmind

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Re: What do you wish you had been told/asked?
« Reply #31 on: January 18, 2007, 05:55:12 PM »
Hmm...

Recollection time:  I got tested by my primary doctor (who just happens to be gay). He gave me the results in a very direct way.  After a few minutes in started to sink in and I started to well up....he hugged me and said that it was going to be okay.  I was safe and not going to die tomorrow.  I saw him the next day (my bf was getting tested in response to my positive test--turned out negative if you are wondering).  I was in the waiting room and he saw me and came out and sat next to me and said, "You're still here...".  I cracked a smile. Asked me if I needed anything and made sure that I had the information on the ID specialist that he was recommending.

So, in short, it could have been worse.

My case worker?  One word:  USELESS.  I have had to do everything myself. I think with all I have read about HIV that I am more qualified to be a case worker than she is.   Three months after my diagnosis, she calls me up and asks if I still require case management.....I said yes to keep my information in the system, but if I ever really need something important done, I'll be asking for her supervisor.

To the author of this post:  Just be knowledgeable about HIV and social programs....we want to know what to expect....medication programs are key, as is therapy referral and support group information.
Tested Negative: 5/06
Tested Positive: 9/06 
9/06: CD4: 442 (28%) VL: +100,000
10/06: CD4: 323 (25%) VL: 243,440
11/06: CD4: 405 (28%) VL: 124,324
12/06: CD4: 450 (29%) VL: 114,600
1/07: CD4: 440 (27%) VL: 75,286
3/07: CD4: 459 (30%) VL: 44,860
5/07: CD4: 353 (24%) VL: 50,852
7/07: CD4: 437 (29%) VL: 39,475
9/07: CD4: 237 (32%) VL: 372,774
10/07: CD4: 324 (27%) VL: 115,454 
Started Atripla: 10/07
11/07: CD4: 524 (?%) VL: Undetectable!
2/08: CD4: 653 (35%) VL: undetectable
5/08: CD4: 822 (40%) VL: undetectable
8/08: CD4: 626 (35%) VL: undetectable
12/08: CD4: 619 (36%) VL: undetectable
3/09: CD4: 802 (38%) VL: undetectable
7/09: CD4: 1027 (43%) VL: not tested
10/09: CD4: 1045 (43%) VL: undetectable

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #32 on: January 18, 2007, 05:59:15 PM »
indyguy,

It's the oddest thing: Looking at your picture, I feel like I already know you from somewhere...  ;)

"We will make you talk," huh? Fun! (said sarcastically) Personally, I wouldn't want to be on either side of that conversation.

Based on my very limited experience, I get the impression that some people who work for DIS (or whatever else the local group is called whose responsibility it is to cover the protecting-the-public-health angle) could use better training/supervision in how to address inherently intrusive matters with sensitivity and skill (such as in asking for only the information that one absolutely has to have in order to do one's job correctly).

Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #33 on: January 18, 2007, 06:34:28 PM »
marco23,

Nice flame ya got there.
 
Ugh. I shudder to think how many people out there are getting what basically amounts to a hit-and-run diagnosis, without even a modicum of information and emotional support to go with the news.

I think that counselors now, like then, are a pretty diverse bunch. I'm sure that some are like those that you encountered in '93, and some, thankfully, are not.

Talking about support groups, I know of at least one group in my local area, and I do mention that as an option to my clients. Not surprisingly, some people, at least during the first weeks and months after being diagnosed, don't want to go to a group (never mind that some of them might actually be glad that they did, once they got there). For such people, I'm hoping that visiting the forums here and reading what everyone posts (whether or not they post themselves) will serve as a safe-feeling way for them connect with others, for those who want to give it a try.   

Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #34 on: January 18, 2007, 06:41:10 PM »
poet,

I just wish I could give every client a computer and an Internet connection, so that everyone can easily and freely access such great resources online.

What you said about providing people with tools to learn how to think reminds me of the difference between teachers merely imparting information to students versus teaching them how to think. Power to the people (including the poz)!  :)

Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #35 on: January 18, 2007, 06:42:28 PM »
Eldon,

Education about anything in particular?

Brian

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: What do you wish you had been told/asked?
« Reply #36 on: January 18, 2007, 08:45:55 PM »
It is not so much about what I wish they told me more than it is about what I wish they hadn't done.  I hated being told what I am feeling is normal.  I hated all the touchy feelie stuff.  I wanted information.  I wanted to feel sorry for myself.  And I wanted to start taking care of the problem as quickly as I could.  And mostly I wanted people to talk to who weren't going to all hold hands and sing kumbaya and create a safe space where we can all justify all sorts of heinous acts just because we have some sort of right to self expression.   I was of the opinion that it's pretty hard to get HIV and not know how I got it.  Mostly I just wanted to deal with the sudden poignant intimacy of own mortality.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Eldon

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Re: What do you wish you had been told/asked?
« Reply #37 on: January 18, 2007, 08:51:16 PM »
Proud: What are some of your suggestions to make improvements for the ASO's?

Offline Coffeechick88

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Re: What do you wish you had been told/asked?
« Reply #38 on: January 18, 2007, 10:40:07 PM »
I definitely agree with the Chaplin--some kind of emotional support would have been nice.  The ID doctor was a very nice guy, but it really was impersonal--just "unfortunately that test was positive....treatments are better these days...HIV was not a death sentence"  but I needed more than that.  Maybe getting into me into counseling immediately--I am not someone who gives into great shows of emotion or will even usually admit something is wrong--because even though I acted fine about everything, I wasn't---it would have saved a whole part of my life. 

I also wish my mom and grandma had asked me permission before telling everyone---just because they are family doesn't mean I want them to know and just because this family friend who hung out with my dad as a kid and who I never had met had HIV doesn't mean I wanted him to know.  It would have been nice to meet the guy and let it flow rather than being thrown together and having awkward "How's the HIV treatin ya?" conversations at the urging of my grandma.  That was one big thing, because I kid you not, about 20 people knew by the end of the day--all without my knowledge (until the next day when my mom said, Oh I told these people).
« Last Edit: January 18, 2007, 11:16:16 PM by Coffeechick88 »
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline Lou-ah-vull

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Re: What do you wish you had been told/asked?
« Reply #39 on: January 18, 2007, 10:56:37 PM »
As I read these stories, I was very lucky.  I had been given a rapid HIV test for life insurance and had permitted the results to be sent to my primary doctor.  i got a call from the doctor to make an immediate appointment.  He revealed the results to me and ordered a blood test for HIV to confirm the rapid test.  He already had several recommendations for ID doctors that accepted my insurance and made some inquiries to give me an assesssment and recommendation as to which one to call first and why.  He knows me and my family well and he encouraged me to wait until I was ready to disclose.  He encouraged me to research on the internet.  Given the gravity of the diagonsis and the moment, I received about the best help I could have been given and from someone I already knew and trusted.  I don't know of anything that could be different in my case. 

This is a great idea for a post...thanks!
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD

Offline Pippet

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  • Life is drawing without an eraser.
Re: What do you wish you had been told/asked?
« Reply #40 on: January 18, 2007, 10:56:58 PM »
I don't even know what a "case worker" or ASO is...  All I got was a referral to an ID from my GP.  (and a very poor excuse of an ID at that!)  Now I am searching for a new ID and my only weapons seem to be the phone book and my insurance card!  I feel cheated.
Diagnosed Aug. 2006
CD4 246, VL 202,000
Started Truvada/ Viramune 11-23-06
Taken off meds 12-06-06 (Bad Rash)
Started Truvada/ Reyataz, Norvir 1-18-07
Taken off Norvir 3-1-07 (Jaundice)
New doc 3-22-07
CD4 229  VL 1031
My latest cocktail...  Truvada and Kaletra (4-6-07)
CD4 289 VL 350 (5-15-07)
CD4 308 VL 115 (8-06-07)
CD4 349 VL 511 (11-5-07)
CD4 489 VL 383 (2-4-08)
CD4 483 VL <50 (5-6-08) YEAH
CD4 545 VL 108 (9-12-08)
CD4 409 VL <48 (1-27-09) YEAH
CD4 505 VL <48 (5-20-09)
CD4 385 VL <48 (9-15-09)
CD4 609 VL  159 (2-28-10)

Offline FiercenBed

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Re: What do you wish you had been told/asked?
« Reply #41 on: January 18, 2007, 11:58:33 PM »
yikes....what a post!

june 24, 2006 8:34 AM. <cell phone time> Doc calls on the cell phone while @ work sez  Mr. XXX and I said yes. <I knew who it was from caller id>. He said Iv got ur test results back and it looks like itz HIV. I said 'really' <i mean what do you say>.
i had white spots in my mouth and lost 40 lbs in a year and looked pretty bad. an obnoxious women in my building said on the elevator 1 day. "whatz wrong scott, got the big a?" <bitch....lol>. so i had a 'feeling' this was coming.
He obviously wasnt gonna carry the conversation so i asked well what do i do know. he replied we need to get you in here and get you on some medication. I knew nothing about vl this and cd4 that. Im like okay howa bout tomrw?. he replied he was full for the week and it was the 4th holiday the next week and he was going on vacation for 2 weeks. <ooo to be a doctor wife> Im like well shouldnt i get some medicine NOW!? Hez reply was and I quote, "well it has waited this long, it can wait three weeks."

what a long three weeks. happy 4th of july! anyway day comes to c the doc. this guy was an i.f. doc but the waiting room was full of old people w/ a variety of problems. im like well okay....mayb i just have a little bit of aids...lol seriously i thought this. well the news was just bout as bad as it could get. he sez ur cd4 count is 104. im like what does that mean. he replies "we define that as full blown aids". I said JESUS, thinking well thatz it. He calmly states now Mr XXX weve come a long way with this disease.<well thanx> so w/ in 10 minutes im told iv got full blown aids and 3 per scriptions. he did not explain any of the particulars with the medication. kaletra & truvada. im thinking to myself my god how am i gonna cover this up?

what he didnt tell me was the next 3 months starting on the meds was GONNA BE HELL! i mean i was suicidal. no lie. i kept calling him and saying oh my god i am so sick. he kept saying it will get better. hez solution to side effects was tums and benadryl. <no lie>. so a friend sent me to a so called specialist in dc. I'm not thrilled w/ him but i do have a tool box full of medication to treat any side effect to open my own CVS.

Whoops....guess i got off topic 2. Any way....NO, i got no social or physc help or even a suggestion of it. The HIV test form said this information reported to the state of maryland department of health. i asked the doc what does this mean r they gonna come knocking on the door. he said no no. itz strictly used statistically for funding purposes. and to his credit guess he was right. i never heard from anyone.

so my first suggestion would be DONT TELL PEOPLE ON THE TELEPHONE!. and for Christ sake give the person @ least 30 minutes of ur time to explain the process especially the drugs. after babeling on here for a couple of months iv found all sorts of info i wish i had on the 'big day' . those drug card r one of them. i found this site w/ google.

if the health and human services dept can publish a 216 page guide to HIV treatment for doctors, we could @ least get a four page brochure like the I Just Tested Positive Lession. Iv seen those little cartoon character brochures and there just silly.
« Last Edit: January 19, 2007, 12:01:00 AM by FiercenBed »

Offline Eldon

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Re: What do you wish you had been told/asked?
« Reply #42 on: January 19, 2007, 12:04:57 AM »
1. Orgin

2. Awareness

3. Prevention

4. Proactive Measures

"What Can I do today to make a better Tomorrow?"

Offline carousel

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Re: What do you wish you had been told/asked?
« Reply #43 on: January 19, 2007, 09:59:44 AM »
.
« Last Edit: February 15, 2007, 09:46:16 AM by carousel »

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #44 on: January 19, 2007, 10:38:36 AM »
Longislander,

It's a real shame that you didn't get more help than that with hooking up with a decent therapist.

Thanks for commenting.

Brian


Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #45 on: January 19, 2007, 10:45:14 AM »
SoSadTooBad,

Thanks for sharing your wish list. I especially liked your point about postponing major decisions, if possible. Im glad you found vital support here.

Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #46 on: January 19, 2007, 06:11:26 PM »
Tucsonwoody,

Yes, that does help; thanks.

Could you say a little more about a couple of things?

You mentioned that you thought that it would have helped you if someone had come right out and told you from the start how close you were to dying from PCP in the hospital. What about that would have been helpful to you? "Just" the general sense of knowing the truth fully and promptly, or...what?

You also mentioned that many people are reluctant to take advantage of services, such as the therapist, nutritionist, and pharmacist at the clinic that you go to. Could you say a little more about such reluctance?

Thanks,
Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #47 on: January 19, 2007, 06:18:43 PM »
tsw923,

Especially after reading everyone else's posts, I'm glad to hear that some things went well for you. Such positives take on a different perspective once you've heard about some weaknesses elsewhere.

Based on what you and some others have said about websites, I'll start giving clients a handout listing a few of them and including descriptions of them and/or printouts from them.

Thanks,
Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #48 on: January 19, 2007, 06:20:37 PM »
Eric,

That must be one great ID doc you've got there. Don't let that one get away!  :)

Brian

Offline proudphoenix

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Re: What do you wish you had been told/asked?
« Reply #49 on: January 19, 2007, 06:32:06 PM »
philly267,

I think I'm really fortunate to be working in a place that saw the value of creating the "bridge counselor" position that I work in. Even though some of my clients are broke/homeless/without insurance, some of them are none of those things.

So far, I'm managed to keep up with the newly diagnosed people who are referred to me, though I could use more time (A) to follow up with those who are "lost to care" (those client who have chosen to go to our HIV clinic but who haven't kept an appointment there in the past six months) and (B) especially to spread the world further in the community that I'm available to take referrals. (That's why my boss is applying for a grant to create a second such position.)   

Thanks for your comments.

Brian

 


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