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Author Topic: Am i Crazy and obssessed, or just wanting to know whats going on  (Read 971 times)

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Offline rusty1

  • Member
  • Posts: 6
Am i Crazy and obssessed, or just wanting to know whats going on
« on: December 06, 2009, 10:37:13 PM »
I was diagnosed with hiv in September and since then i have been on the internet, researching, and reading, and reading somemore. I compare labs i have to the information i find,  on here, and other websites and my Partner keeps saying i need to stop reading that i am obsessed with this. But i feel its just being proactive and trying to learn as much about this disease as possible. can someone give me some advice?

Thanks
02-09 Neg
9-9-09=poz result
9-14-09=cd4 168 vl-12,500
next lab Jan 6.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #1 on: December 06, 2009, 10:44:24 PM »
Many people go through a period of intense learning about HIV after diagnosis -- some of us can't stop and still post here years later  :)

But if a caring person who knows you well thinks you are obsessing ... well, the world will not end if you take a week off and focus on other things.  Maybe you should take a brief break and see how it feels.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline rusty1

  • Member
  • Posts: 6
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #2 on: December 06, 2009, 10:58:59 PM »
thats true. i just still have alot of unanswered questions, and i try to find them when i think of them. and since i found this forum, i have answered so many questions its amazing.

Thank you
02-09 Neg
9-9-09=poz result
9-14-09=cd4 168 vl-12,500
next lab Jan 6.

Offline tednlou2

  • Member
  • Posts: 4,903
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #3 on: December 06, 2009, 11:56:48 PM »
I've been dealing with the exact same thing.  I've been doing at least 2 hours a day of research, asking questions of HIV docs at thebody.com or johnhopkinshivguide, or talking on this site.  I've been told if I really want to move on with my life and not allow HIV to define me, I should take a break and do normal things online--like look at porn...lol. 

I think you should learn as much as you can, though.  Especially during the first year.  I'm finding this site very helpful.  However, I have run into some drama here as well.  The docs at thebody.com have been so very helpful.  Dr. Gallant at john hopkins HIV guide has been very helpful too. 

Obsessed would be doing nothing but research.  If you're only researching a few hours a day, I don't think that's a big deal.  If you are going to work, showering, and maintaining a social life, I don't think you have a problem.   

Offline UK_SL

  • Member
  • Posts: 51
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #4 on: December 07, 2009, 01:32:35 AM »
I was doing the same thing when I was first diagnosed, I kept reading up on all the disaster stories and because for me I started with such a low CD4 count that I couldn't understand why I wasn't really ill, I mean I'd had the odd infection and thrush not nothing major and all I kept reading was PCP and cancer with a low CD4.
It got ridiculous to the point I was imagining having symptoms that I didn't really have, I just avoid the internet for mediacal advice now otherwise I would have ended up in the nut house. If I need any advice, support etc now I just rely on my clinic staff - there very good.
05/10/2009 ~ DIAGNOSED, CD4 = 8
22/10/2009 ~ CD4 = 11/VL = 430,000, STARTED ATRIPLA and SEPTRIN
26/11/2009 ~ CD4 = 121/VL = 840
22/12/2009 ~ CD4 = 184 (6%)/VL = 340
11/03/2010 ~ CD4 = 177 (12%)/VL = 72
01/07/2010 ~ CD4 = 247 (12%) VL = 76
20/01/2011 ~ CD4 = 350 / VL = 29

Offline moratorium79

  • Member
  • Posts: 44
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #5 on: December 07, 2009, 03:41:39 AM »
I think that research is an essential part of dealing with this disease.  Granted, my ID Dr has been less than stellar, but I wouldn't have found out over half of what I was dealing with had I not taken it upon myself to look.  I think it arms you mentally, which is a must when you are dealing with this. 

I can definitely understand your partner's concern, as this can also lead to anxiety and (occassionally) hysteria.  But I feel that if you keep a level head and recognize where you are in your situation, then keep the search going!

It may seem crazy, but these are crazy times, and this is a crazy thing to have to live through.  Might as well get all the proverbial armor you can.
*these are not times for the weak of heart*

Offline mecch

  • Member
  • Posts: 11,763
  • red pill? or blue pill?
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #6 on: December 07, 2009, 04:38:08 AM »
Its an equilibrium you have to find for yourself.
I know my ID recommends that recent seroconverts avoid the internet for 6 months.  I know someone who goes to this ID and still hadn't learned anything at 2 years, and the ID chewed him out for the misunderstanding. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MarkB

  • Member
  • Posts: 292
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #7 on: December 07, 2009, 05:09:38 AM »
Some wise advice above.

Not sure from your post just how much time you are spending on this each day, but I think Assurbanipal's suggestion is a good one. Why not take a week or so right away from reading and researching about HIV and do other things with your life (after all, what harm can a week off do)? If that feels OK, then you can return to your research knowing that you, and not your concerns, are in charge. If however you feel that even a few days is too long to be away from your information gathering, then your partner may perhaps have a point, and you need to reach a balance.

And this is in no way to belittle the importance, as others have said, of arming yourself with good information.


Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Am i Crazy and obssessed, or just wanting to know whats going on
« Reply #8 on: December 07, 2009, 06:28:36 AM »
thats true. i just still have alot of unanswered questions, and i try to find them when i think of them. and since i found this forum, i have answered so many questions its amazing.

Thank you
My wife said the same to me i do maybe 1 hour a day on average at least but have now been 1 year pos and feel i have a good grasp of most things. This site has been my therapy i cant describe how much its helped me ive been given some invaluable advice, at first it was daunting all the info but bit by bit you get through it.
I started meds 1 month ago and get results this week if all is ok i plan to move on and just pop in from time to time to keep informed of latest news.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

 


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