A WalkDown Memory Lane, my first 2 yrs being poz

[woodshere]

Was doing some cleaning today and found all my HIV stuff from when I was first diagnosed.  Found 30-35 different printouts, from the CDC to The Body to info on local drs, dentists and services available.  Printed those out before my first ID doc appt where he told me not to go on AIDS overload.  I found notes from where I spoke to a couple of different organizations and the huge notebook from the THRIVE workshop I attended in Atlanta.  Found my certification from the state of KY to do pre/post HIV test counseling.  But probably the most intersting thing I uncovered was a notebook with all my lab results and graphs from the first 2 years, but nothing after.  I don't think I lost interest in my lab results, but just became less obsessed about keeping up with the fact my cd4 rose by 35 or dropped by 15.  Just decided that as long as my cd4 stayed at a good level, minus a blip or two and I was undetectable there really isn't a need to review every test or see a graph of the improvement.  After looking at all the info, decided to toss most of it and do some things a little different this year.  No I am not going to start recording and graphing all my test results again.  What I would like to do is become active in an HIV/AIDS organization here in Louisville and do some speaking.  Just hope this doesn't go the way most of my new year's resolutions do!

[leatherman]

What I would like to do is become active in an HIV/AIDS organization here in Louisville and do some speaking.

Bravo, Woods! Being an HIV speaker is an empowering thing. Plus not only does it help in reducing stigma (putting a face to the virus), but anytime more knowledge can be shared about HIV and HIV prevention, that's a very good thing. Good luck and best wishes on keeping a worthwhile resolution.

[tednlou2]

I've kept all my labs and the ones from the hospital where I was diagnosed, too.  I see that hospital report where it says I have AIDS.  I have all these notes with tons of questions to ask my doc.  For now, I guess I'll hold on to this stuff.  I kinda wish I would have documented my doc appts on video--mostly because I often forget things we discussed.  But, I thought having all that early education on video would have been good for a youtube video.  When I was first diagnosed, I searched for videos where people went to their doctors, so I would know what to expect and to start learning key terms, labs, etc.  I had a hard time finding anything.  I think it would have helped to see what a doc visit would be like and what to expect. 

Woods, I remain impressed how you and other members do public speaking events about HIV.  I would hope to be able to do that one day.     

[GSOgymrat]

Woods, I think you have a great attitude and becoming a speaker is an excellent idea.

[mecch]

I chucked all that stuff too. The doctor has the records he needs.
Bravo if you want to speak!

[Oceanbeach]

Hey Woods,

In 16 years, I have the phone number of the Clinical Case manager, get information and they take care of the details.  I have been with 4 providers in that same time so, when I move, I request records transfer to new facility w/1 copy for me.  I keep files for those times doctor thinks I need a colonoscopy and I remember a whole medical team up my ass.

Over the years, my volunteer hours were serving as Chair in a small California resort town on the advisory board.  I moved here 6 years ago and heard "we could lose 75% of our funding" so I joined the Commission on AIDS, all the subcommittees and task forces, built and managed a website and served as press agent for the COA.  There were implications made that I would receive a paid position with the county.  Also having been on the funding board, I have learned, you can take on too much because there is a long line of government paid employees who can not say the things they want because being on the payroll, they are government property which can not be used to lobby the government.

The HIV Section Managers, ASO Directors, Commissions on AIDS and most non-profit organizations all need volunteer consumer advocates who will attend meetings, speak to the press and to the public.  Some people talk to the children and educate while others lobby and build press relationships in 5 surrounding counties.  It is all important, I hope you find the right cause and make a difference in your community     Have the best day
Michael