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Author Topic: Newly diagnosed...reading a lot.....doing OK  (Read 3755 times)

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Offline confidentIwillbeOK

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  • Posts: 131
Newly diagnosed...reading a lot.....doing OK
« on: August 13, 2009, 03:49:24 PM »
Found out a few weeks ago and am actually doing very well. The first couple of days were real tough as the diagnosis was a shock and totally unexpected.  I had trouble sleeping, eating, working, and thinking clearly for those first few days but then I started to get my shit together and figure out what I needed to do to educate myself and determine what short term things I needed to do.  

In two weeks I have made tremendous progress in "righting the ship" and making sure I will be in the best physical and mental shape to battle this in the MANY years to come.  Among the things I have done are:

1) changing my PCP to a ID specialist and HIV expert who works at one of the leading facilities for HIV care in the country
2) had every possible test done including resistance testing and all the other tests recommended for those with a new diagnosis
3) spoken with a few other physician and medical professionals for advice
4) contacted a local AIDS advocacy group to find out about support groups and resources.  There is amazingly enough a satellite office right around the corner where I live and they have a "newly diagnosed support group" that I will be going to
5) broke the news to a very supportive and loving mother who has always provided, and always will provide, unconditional love and support.  She is very educated (for a non medical non HIV infected person) about HIV and her reaction was what I knew it would be....incredibly non-judgemental, loving, and understanding. She offered to do anything at anytime to help with anything.  I told her 2 hours after I got the news.
6) have spoken at length to a family friend my mother told me about who has had HIV since the 80's. He is now receiving care at the same facility I am going to and is doing great.  My partner and I are going to get together soon for dinner with him and his partner.  As I have very few (1 that I know of) friends with HIV it will be good to meet and talk to someone that has been dealing with this for a long time
7) subscribed to POZ
8.) read "100 questions about HIV and AIDS" by Joel Gallant.  Excellent book that helped me get out of my funk on day three.  I read the book in it's entirety in one sitting and it really allowed me to be optimistic that what I was feeling in the first 48 hours was bullshit (you know....the "this sucks I am going to die" thoughts
9) almost completed reading "A decade of HAART. The development and global impact of highly active antiretroviral therapy".  Although a lot more technical that Gallant's book it is giving me more info about the disease and helping me formulate the questions I will ask my PCP in upcoming visits.
10) partner is reading an even more scientific book "HIV and the Pathogenesis of AIDS" by Jay Levy.  Perhaps down the road I will take a crack at this book but it is very technical.  He, however, is enjoying it as he is a medical professional
11) joined this forum and have communicated with a few people and had the pleasure of meeting a few at the AMG
12) told my personal trainer who I work with once a week so he can work with me to modify my exercise regimen if need be. He is a master trainer and is someone who cares about my well-being...I am glad I told him.
13) coincidently had a dentist appt a few days after "the news" so I told him.  I think he was the first person other than my mother I told.  It was hard and felt weird to say "I have HIV".  Scheduled an appt. with my dermatologist who I have been meaning to see just to do regular melanoma checks (have had some moles in the past that needed to be removed).
14) told a handful of other close friends and in all cases it went very well and I am glad to have their support.  The one person, oddly enough, who took it the hardest was an oncologist friend of my partner who completely broke down and sobbed for quite a while..I was expecting a different reaction from a medical professional
15) read a ton more on "thebody.com"; Johns Hopkins HIV website, and quite a few others.  I have tried very hard to avoid web content with suspect, outdated, or non-medically accepted data.  I know this is challenging but I think if I avoid as much of the "noise" as possible I will have better data and can make more informed decisions.
16) have had a lot of discussions with my partner and in no way, shape, or manner do we think this will affect our wonderful relationship (together 10 years and married).  We love each other a lot and both recognize that this will, hopefully, someday soon become low on the list of daily concerns.  I personally feel so much better that he will be there with me than if I was alone.  Coupled with his medical background and his positive attitude (yes....he is + too) I feel very fortunate to have him in my corner.  Our exposure was very recent and we feel fortunate that we found out abut this now and not years down the road.  I would give anything to turn the clock back and not be infected but at least we didn't find out when our counts were bad or if we started to experience health affects.
17) spoke with a good friend in HR at work (who has done counseling with HIV/AIDS patients) who explained the healthcare and benefits situation related to HIV treatment for my company's plan. Bottom line is that I have an outstanding PPO and there will be no issues whatsoever in getting whatever care I need.  He told me there are other people at work with HIV and they are all extremely happy with the benefits plan. Not that I need it but my mother also offered to help with anything.  Thankfully we have financial resources as well and have started to think about the need for better long term planning.  We will get wills, power of attorney, etc...done in the not too distant future
17) went on a well needed mini-vacation and was happy to get away for a few days
18) went to Sleepy's and are going to invest in the best Tempurpedic bed we can buy.....  Good sleep is important...right?   :)

There are probably a few other things we have done as well but that is just what popped into my head when I started to think about the past few weeks.  Every little bit of all these things has helped me feel better.  As I have great family and friends, financial resources and good insurance, a good doctor and facility, found out about this weeks after the infection, am becoming very educated about HIV/AIDS, am in very good general health (zero drug use, non smoker, very light drinker, no other health issues, work out regularly, no mental health issues) and have an overall positive attitude (as much as could be expected) I feel like I am in pretty good shape.  I fully recognize that there will be struggles and challenges ahead but hopefully we will both be ale to overcome them.  Life sometimes throws you a curve-ball but sometimes they can be hit for a home-run! In the past year or so friends and family members have died or been diagnosed with various cancers, heart disease, diabetes, and 2 have had strokes so in some ways I feel it is fortunate that "all I have to worry about is HIV".  

Anyway, a long post but it was somewhat therapeutic writing it and I feel like if even one newly diagnosed person popping into this forum reads it and feels a little better then it was worth writing.  I know other people have much more difficult situations (financial, lack of quality care, poor family support, other health issues, etc..) but I thought I would share my relatively positive perspective.  Again, I am not naive enough to think there will not be bumps in the road ahead but hopefully they will be just like all the other little bumps that need to be overcome.

I will post more down the road when I have all the results back and know what the short term treatment plan will be.


Breaking News - Other half just walked in as I finished my post and he got some additional data back from his first rounds of tests and it was, I think, very good news.  Will be speaking with the doctor shortly but from what we know the resistance testing results were exactly what we hoped for.  This is what was scaring me the most so if this is the case I feel even a tad better then when I started writing this.   :)
« Last Edit: August 13, 2009, 03:51:09 PM by confidentIwillbeOK »

Offline webontheweb

  • Member
  • Posts: 110
Re: Newly diagnosed...reading a lot.....doing OK
« Reply #1 on: August 13, 2009, 03:55:44 PM »
Hi buddy,  when you finish remaking the world, may I come and play in your yard?  What a post!  I don't think you need us, I think we need you.  Quite a blueprint of what to do and hwo to do it.
Just in case though, there are a lot of us on here most willing and able to help, discuss, hand hld , etc. as you process all of this.
Good luck!

Offline ohboy!504

  • Member
  • Posts: 16
Re: Newly diagnosed...reading a lot.....doing OK
« Reply #2 on: August 13, 2009, 03:56:38 PM »
I have done all the reading i an and have only told one person, but i hate waitng for these labs......i tell myself I will be ok but then again idw
Tested POZ- 06/07/2009
VL=264,228(08/20/2009) CD4=266- (08/20/2009)
Started Atripla (08/20/2009)
CD4=529(1/07/2009) VL=138(01/07/2009)
(Dont know my numbers inbetween this time)
CD4=610 VL=Undetectable (06/10/2010)

Offline sdguyloveslife

  • Member
  • Posts: 134
Re: Newly diagnosed...reading a lot.....doing OK
« Reply #3 on: August 13, 2009, 04:26:40 PM »
Hi Steve,

Wow!  From reading your post I can't tell if you just contracted HIV or won the lottery! ???  You almost sound ready to plan a party and celebrate! 

All kidding aside though, while HIV is no joke, I find it remarkable that you have been able to adjust so well in such a short period of time and for that reason, I'm happy for you.  Welcome to the forums! 

All the best,
Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline Rev. Moon

  • Member
  • Posts: 3,788
  • Smart ass faggot
Re: Newly diagnosed...reading a lot.....doing OK
« Reply #4 on: August 13, 2009, 08:41:52 PM »
Hi Steve, very nice entry...  This is definitely the right attitude and approach.  I somehow knew that you'd be alright from the time when you sent me a PM a few days ago.  

Best wishes and a big hug,

« Last Edit: August 13, 2009, 08:57:33 PM by livebythemoon »
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."


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