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Author Topic: What do you wish you had been told/asked?  (Read 10227 times)

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Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #50 on: January 19, 2007, 06:36:59 PM »
Queen Akasha,

That's a good point you made about how one service provider might be helpful for one person, even if he or she is not helpful for another.

You mentioned that you usually bypass your case manager and talk to the receptionist or the clinic nurse. Do you find that that they adequately meet your needs for additional information?

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #51 on: January 19, 2007, 06:42:25 PM »
Strayboy74,

Yes, indeed. I'm glad you found the board, too.

Is that what most helped you feel less lost and scared?

Brian

Offline loshan

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  • Posts: 22
Re: What do you wish you had been told/asked?
« Reply #52 on: January 19, 2007, 10:12:30 PM »
From what I see here, I think all caseworkers should train with the Spokane (WA) Regional Health District HIV/AIDS folks.
They were wonderful and just right on everything.
Non-judgemental, informative and very helpful to this day (1 yr later). I can call my case manager for anything from side effects, to help with gas to get me to a dental appointment.
They are incredibly well informed on all the various programs and help available and have even called me when a new program went in effect to see if I needed the help it offered

Offline tsw923

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  • Posts: 174
Re: What do you wish you had been told/asked?
« Reply #53 on: January 19, 2007, 10:54:52 PM »
Brian,

Glad to see you're being proactive and glad I can help.  Can I also suggest that you encourage folks to keep a notebook and or a file folder so they can write down questions (and anaswers) keep perscriptions and any information all in one place.  Let them know that they can get copies of their test results and keep those as well.  It really has been helpful to me.  I take it to each appointment.  And just before each appointment I take some time to write down any questions I want to ask.  I find that when I'm in the doctor's office I just can't think to ask them, so it helps to have it written down.


Fierce -- I'm in MD too.  And you are right.  As of yet I've gotten no phone calls from MD Dept of Health.  And the cartoon pamphlet is a joke...

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 Queen Tokelove

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Re: What do you wish you had been told/asked?
« Reply #54 on: January 20, 2007, 02:15:50 AM »
Queen Akasha,

That's a good point you made about how one service provider might be helpful for one person, even if he or she is not helpful for another.

You mentioned that you usually bypass your case manager and talk to the receptionist or the clinic nurse. Do you find that that they adequately meet your needs for additional information?

Brian

Well, I did find that I made one mistake in regards to my case manager, she was raised in Erie but when she got married, she moved to Warren. I guess she just lost touch with the area but she does have a lot of experience in regards to AIDS, her last job was in a correctional facility.

I talk to the clinic nurse about health issues or when I want to get her opinion on something before I ask the i.d. doc. Or if I want to know what the i.d doc might feel about something, she has been working with him for some years so she kinda gives me a heads up of what he might think or say. I talk to the receptionist when I need information on some things here or a phone number for something.

I guess it's kinda hard to communicate with her because it's basically on a professional level whereas with my old case manager we could talk about anything and some things that came out our mouths were not always professional... ;)
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
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11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
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01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

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Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #55 on: January 20, 2007, 04:51:58 AM »
skeebo1969,

Gee, I just love that line about “Why on earth would you say that? … You are.” I can’t help wonder why on earth she would ask that when she knew for a fact that you were poz. What with her ushering you to the parking lot, etc., I think she’s given you plenty of material to work with if you ever want to create some darkly comic work (in film, writing, etc.) based on your experience.

I had to google “Baker Acted” since I wasn’t familiar with Florida’s Baker Act. I take it from that, that you mean that a therapist had you committed to an outpatient treatment program?
 
It must be hard going from the great to the not-great end of the spectrum, rather than the other way around. But hooray for you, influencing the agency that you’re with now to improve their procedures. 

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #56 on: January 20, 2007, 04:58:54 AM »
J.R.E.,

Hopefully, you’ve seen a vast improvement since then in the services that you’ve received.

Thanks for sharing. 

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #57 on: January 20, 2007, 05:09:46 AM »
thunter34,

Thanks for saying more about what you had in mind. That helps a lot.

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #58 on: January 20, 2007, 05:20:39 AM »
racingmind,

When you talked about how useless you found your case worker to be, I started wondering how many organizations out there have any sort of system in place to get feedback from their clients. Not many, I bet.

I’m thinking that I might come up with a brief set of questions (a survey) to ask my clients, a year after I started/stopped working with them. Maybe you all here can help me later with choosing which questions to include. 

Thanks for your comments.

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #59 on: January 20, 2007, 05:35:12 AM »
dtwpuck,

Yeah, I’m guessing that it’s pretty hard to overstate the impact of becoming conscious of one’s mortality. Most of us have probably never thought much at all about it.

Reading your comments, I’m reminded about how varied people are. One person wants information (“None of that touchy-feely stuff for me”), while another wants someone to ask him how he’sfeeling and listen while he answers. One person doesn’t want to think about HIV at all after being diagnosed, while another wants to learn everything that he can about it. One person doesn’t want anyone else in the world to know about her diagnosis, while another wants to meet other people who are going through the same thing that she’s going through. And so on.

Thanks for your reply.

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #60 on: January 20, 2007, 05:38:59 AM »
Eldon,

Thanks for your follow-up comment about education.

You asked, “What are some of your suggestions to make improvements for the ASO's?”, and I wasn’t sure what the context was for your question.

For example, do you work for or volunteer with an ASO? Are you looking for ideas for how to improve it?

Brian

Offline proudphoenix

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  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #61 on: January 20, 2007, 05:44:29 AM »
Coffeechick88,

Yikes. So much for privacy and self-determination.

You mentioned that it would have saved a whole part of your life if you had gotten into counseling immediately. Could you say a little more about that? In other words, looking back, what do you feel like you would have gained from that, that you didn’t because it didn’t happen?

Brian

Offline proudphoenix

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  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #62 on: January 20, 2007, 05:48:02 AM »
Lou-ah-vull,

You’re welcome! It sound like your primary doctor “had his ducks in a row” to help you make your way through those first days/weeks/months after being diagnosed. That’s nice to hear.

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #63 on: January 20, 2007, 05:52:25 AM »
Pippet,

You're in San Antonio, Texas, right?

Have you already posted a message here, asking for ideas for an ID specialist in the area?

If not, you might try giving it a shot. I wouldn't be surprised if one or more people here have some helpful thoughts on the subject.

Good luck with your search,
Brian

Offline proudphoenix

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  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #64 on: January 20, 2007, 06:03:22 AM »
FiercenBed,

Gee, maybe you could collaborate with skeebo1969 (see above for his comments) on that darkly comic work that I mentioned earlier. You could call it Horror Stories from the Crypt about HIV Care(lessness) or something. All I can say is that I’m glad you’re armed with a good sense of humor.

Good luck with opening that drugstore.  ;)

Brian

Offline proudphoenix

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  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #65 on: January 20, 2007, 06:09:04 AM »
carousel,

I had to smile when you said, “More than anything I wanted somebody to tell me that it would be OK and that it wasn’t the end, though I probably wouldn’t have listened.” I guess sometimes it’s important just to “plant the seeds” of some ideas for the future: even if you wouldn’t have listened to such comments then, they might have taken root and grown over time for you.

Brian

Offline proudphoenix

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  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #66 on: January 20, 2007, 06:20:19 AM »
loshan,

Wow, they do sound good. I hope you’ve told them what you told us. It’s not all that often that people hear positive comments.

After reading your comments, I found their website and I made a note of how to contact their case management department later, if I ever want to get their advice about becoming an (even better ;-)) case manager.

I noticed that they include links to what the state law says about partner notification. I think that’s a good thing. Whether or not people agree with what the law says, I think it’s a good idea that they know what it says.

Thanks for sharing.

Brian

Offline proudphoenix

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  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #67 on: January 20, 2007, 06:27:53 AM »
tsw923,

Thanks. I’ve already encouraged some clients to keep a “medical journal” (to note any symptoms that they might notice, and to write down questions that they might want to ask their health care provider at their next clinic appointment). But I’ll add what you said about keeping everything in one place, writing down answers, and keeping up with test results. Sounds good.

Brian

Offline proudphoenix

  • Member
  • Posts: 39
Re: What do you wish you had been told/asked?
« Reply #68 on: January 20, 2007, 06:30:43 AM »
Queen Akasha,

Yeah, it’s nice when you can feel like you can really “let your hair down” with someone, and pretty much say anything, isn’t it?

Here’s to having than when we can… (clink clink)

Brian

Offline tester8888

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  • Posts: 182
  • 32,wm, gay, hiv neg at 7 weeks, friend is newly +
Re: What do you wish you had been told/asked?
« Reply #69 on: July 28, 2007, 01:01:23 AM »
I was so glad to find this thread!  The whole reason I have spent the past 2 days looking around on the internet was to learn more about HIV and how to be the best possible friend I can to my newly diagnosed friend.  Some of the suggestions, I have already done, and I have now gotten some more insight to what I still need to do/know as we deal with this news.  Also saw a few things that I probably should not have said, and be sure that I do not do again.  Aside from factual information learned, this thread was the best thing I have seen during my search.
7 weeks post exposure, tested HIV Negative.

Be Kind To Everyone You Meet, For You Do Not Know What Battles They Have Fought That Day.

Offline 404error

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  • Posts: 431
Re: What do you wish you had been told/asked?
« Reply #70 on: July 29, 2007, 08:10:10 PM »
The nurse who informed me of my HIV status was kind of helpful.  He didn't announce my diagnosis to the entire clinic, that was done in a private room.  He handed me a book that had contact numbers, websites, and addresses for every HIV organization operating in BC.  Asked who I slept with, could I contact them, the usual stuff.  Having just returned from 3 months in Europe, I had no numbers and only one name that I could give him.  He went on an on about how it wasn't a death sentence and how life would return to normal.  That'd I'd be around for a long time and things would return to the way they were.  I wish I had been told;

1.  Women are segregated from men in the world of HIV services.  Unless of course they are IDU's or sex trade workers, in which case they would access a service specifically tailored to IDU's or sex trade workers and the problems they face as a whole.

2.  Since you are a man the only services we offer are for MSM in a wide variety of ages and ethnicities. 

This would have at least helped to set my expectations for the services I would be reluctantly accessing.  The way the diagnosing nurse painted the picture I figured I'd meet tons of PWA's like me.  People who live clean lifestyles, who don't have a history of drug addiction or working in the sex trade.  People who are women and men who are heterosexuals...  Needless to say this hasn't been the case. 
A social critic who promotes equality...

Offline Matty the Damned

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Re: What do you wish you had been told/asked?
« Reply #71 on: July 29, 2007, 08:25:28 PM »
I figured I'd meet tons of PWA's like me.  People who live clean lifestyles, who don't have a history of drug addiction or working in the sex trade.  People who are women and men who are heterosexuals...  Needless to say this hasn't been the case.

Clean lifestyles?

Up, I have to say I find your comments (as usual) to be extraordinarily offensive. This is the stupid sort of shit we usually hear from pig-ignorant worried wells who don't know any better. Once it's been pointed out to them, they almost always apologise.

I doubt you will be so forthcoming.

Whilst it will probably be of little use, I would suggest that the reason you find connecting with other HIV positive people to so difficult is because of the appalling attitude you bring to everything. It's not us who live dirty lifestyles who are the problem, it's the dirty fucking great chip on your shoulder that's holding you back.

You're alone for a reason and it's all your own damn fault.

 >:(

MtD

/edited for a missing conjunction/
« Last Edit: July 29, 2007, 08:27:57 PM by matty.the.damned »

Offline anniebc

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Re: What do you wish you had been told/asked?
« Reply #72 on: July 29, 2007, 09:47:43 PM »
Quote
I figured I'd meet tons of PWA's like me.  People who live clean lifestyles, who don't have a history of drug addiction or working in the sex trade.  People who are women and men who are heterosexuals...  Needless to say this hasn't been the case. 

I agree with Matty, I find the above statement to be very offensive, that's one hell of a bad attitude you have there.

You obviously have no understanding of those who are or have been through drug addictions or those who work in the sex industry and it seems to me that you are classing them as less than human...and for some reason think they all live in hovels.

As an ex district nurse I'm here to tell you this is far from the truth, the majority of my patients had drug problems and worked in the sex industry and were decent and honest people, I would have welcomed them into my home at any time....you on the other hand I would certainly think twice about it, I have no room in my life for small minded people.

As Matty said you are alone for a reason..and hopefully now that you can see it in your own writings you will Understand why you are having problems connecting to others.

Jan
(who is very angry right now)
« Last Edit: July 29, 2007, 09:52:25 PM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Lis

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  • Posts: 601
Re: What do you wish you had been told/asked?
« Reply #73 on: July 29, 2007, 11:21:23 PM »
I wish I would have been asked if I needed a hug....
poz 1986....

 


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