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Author Topic: 4 Months in and not doing all that great  (Read 6094 times)

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Offline chgo61147

  • member
  • Posts: 2
4 Months in and not doing all that great
« on: August 26, 2009, 11:28:38 PM »
4 months into this since I found out and I am really not doing too great.  I have just been all over the board for 4 months.  It has been one crazy emotional rollercoaster.  I just keep hoping I am going to feel normal again.  I go to the doctor, my numbers are ok, I don't take meds yet, but just knowing I have this is just eating me up for some reason.  Now some days are better than others but I really need to know that it will get better.  I have friends to talk to but they are all neg and it is hard to explain.  they are the greatest but don't fully understand.  I have no idea how to meet other poz guys, I am scared of people knowing, I feel less than or dirty or damaged because I have this.  I just keep wishing it would go away.  I have faith and was doing ok but I have really hit a wall now and am just totally lost and feel totally alone.  Just looking for encouragement that this will and can get better.

Offline PozBrian

  • Member
  • Posts: 200
Re: 4 Months in and not doing all that great
« Reply #1 on: August 27, 2009, 12:05:18 AM »
Hi
  I'm about 5 months into this and understand how you feel.  There are days when I wallow in self pity and condemnation and then there are days when I totally forget about my hiv. I have started meds and so always have a reminder. Sometimes I feel the hiv as an invisible wall that only I am aware of that separates me from those around me. Those are difficult moments. I try not to dwell on those negative feelings too much. I tell myself I'm being silly and I move on. I don't know if that is a healthy thing to do or not, seems a bit like avoidance. However, it gets me past the moment and on with the rest of the day.

I tried pretty early on to find a  support group of just about any kind so I would have a place to validate what I go through and find healthy ways to deal with it. No luck. I travel a lot with my job and could find anything to fit my schedule. So I read the forum posts a lot. You might try that. Maybe you'll have better luck than I did.

I did get one bit of advice from someone who has  been hiv+ for over 20 years. That was to live you life and plan for the future as if you'll be around for it. If there are things that you want to do, or experience, or places to travel too, do them. I prompted me to take the plunge and buy a condo. I'm glad I did too. Though I hate moving I'm having a blast fixing it up.

Another thing I've tried to do is "own" my infection. It is sort of me reminding myself, aversion therapy if you will. My member name here is an example of that. I figure that more I tell myself I'm poz the more it will be something like I'm getting grey hair. Don't really want it, but I might as well get used to it so I can more rationally deal with it.

Hang in there bud, there are gonna be good days too.
3/8 CD4: 495, 31%, VL UD
2/1 CD4: 564, 20%.VL UD, switching to Issentress & truvada
10/11 CD4: 446, 29%, VL UD
7/11 CD4: 873, 35%, VL UD
4/11 CD4: 573, 34% VL 0
12/10 CD4: 405, 30% VL UD
9/10 CD4: 416, 31% VL UD
5/10 CD4: 393, 29% VL: UD
02/10 CD4: 423, 37% VL: UD
11/09 CD4: 379, 25% VL: UNDETECTABLE!!
10/09 CD4: 245, 25% VL: 87
9/09 CD4: 246, 24% VL: 49!
8/09 CD4: 277, 26% VL: 115
7/09 CD4: 346, 24% VL: 221
6/09 started Atripla
5/09 CD4: 326, 16%  VL:125000
4/09 HIV +, CD4: 397, 16%  VL:195000, PPD reactive

Offline chguy78

  • Member
  • Posts: 67
Re: 4 Months in and not doing all that great
« Reply #2 on: August 27, 2009, 01:11:41 AM »
I'm right at five months, too, and began meds about two months ago, so I'm right there with you.  I am going through this with my partner, who was diagnosed the same time I was, so that "helps" a bit to have someone with whom I'm very close to share my feelings and concerns.  That said, every day I see people dying from cancer, being diagnosed with disabilitating diseases and being involved in fatal accidents.  I know what I have.  I know what I need to do to keep healthy.  That, in and of itself, is empowerment.  I wish that I wasn't hiv positive.  But there are definitely worse things that could have happened: if this is it, then I count myself lucky.  It won't always be this easy, I'm sure, but I'm not going to worry about that now.  I'm going to stay adherent and live my life to its fullest.  No day but today, right?  This is what I tell myself, at least.  :-)
01/11: CD4=753 (36%), VL=Undetectable
07/10: CD4=531 (33%), VL=Undetectable
04/10: CD4=746 (33%), VL=Undetectable
01/10: CD4=566 (35%), VL=Undetectable
10/09: CD4=436 (31%), VL=405
07/09: CD4=631 (27%), VL=847
06/09: Started: Truvada, Reyataz, Norvir
05/09: CD4=426 (28%), VL=38,300
04/09: Positive; CD4=466 (28%), VL=39,700
10/08: Negative

Offline physicsguy

  • Member
  • Posts: 59
Re: 4 Months in and not doing all that great
« Reply #3 on: August 27, 2009, 01:33:39 AM »
Things will get easier.  As you wake up day after day, year after year, you'll really start to grasp that being positive does not mean your life is over.

Good luck with finding guys.  It might be harder if you're honest about your status (which you really should be), but you can still meet guys.  There are more + guys around than you might think, although many are rightly afraid of disclosing their status openly so it can be a bit difficult to find them.

Offline positivmat

  • Member
  • Posts: 222
Re: 4 Months in and not doing all that great
« Reply #4 on: August 27, 2009, 05:20:02 AM »
Hey this can and will get better. You will be ok. The virus might be pushing you to your limits right about now. I am diagnosed 7 months now and it is still a shock some days, but has greatly lessened in intensity. I focus on getting out for tennis, going places for fun, my job, my therapist and I just started volunteering at our ASO. If it is still a shock for you, I would try therapy. It may help you identify what is keeping that negativity still in you. Mine is from old stuff that predates my HIV by many years and has left me with a propensity to keep shame longer than I should. I like the support groups too but they aren't that easy to keep in my schedule. Keep reaching out in a healthy way like you have here. If you need to chat, pm me. And tell yourself that you will keep trying to be ok with yourself til you figure it out. You are not dirty or less than. You have a virus. Take care of yourself.

Matt

Offline webontheweb

  • Member
  • Posts: 110
Re: 4 Months in and not doing all that great
« Reply #5 on: August 27, 2009, 07:23:57 AM »
hey buddy.  It is interesting that all the posts are by recently diagnosed.  2 years into treatment here.  I remember those "scarlet letter" days.  It will pass, it must pass.  You are focused on this right now, but gradulally a regular life will return to you.
The best thing for you to do right now is find an HIV buddy- counselor who has been there and that you talk to.  It is better to find someone you don't know unless you KNOW that you have a wise a sympathetic friend to assist you.
You will be okay,  there are thousands of us right here on pozdotcom that are supporting you.
cheers

Offline physicsguy

  • Member
  • Posts: 59
Re: 4 Months in and not doing all that great
« Reply #6 on: August 27, 2009, 12:08:52 PM »
Quote
It is interesting that all the posts are by recently diagnosed.
I suppose I should've mentioned that I've been + and on treatment for about four years.

Offline ruralguy

  • Member
  • Posts: 141
Re: 4 Months in and not doing all that great
« Reply #7 on: August 27, 2009, 12:40:23 PM »
I am only 2 months into this.  I went through what I can only describe as the worst emotional crash of my life.  It still catches me off guard.  Last Friday I went to get my second blood draw and everything came crashing down again.  I can now feel these anxiety attacks coming and that helps me handle them beter.  And they are lessening.  Monday I get my second test results and have the meds discussion (what/when/etc). 

It is hard, no doubt.  But I've come to a place where I'm sure I'll be ok.  I live in a very small rural town.  There simplay are no support groups.  So I seek a lot of input here and it has been great.  If you have not read J Gallant's book or visited his John's Hopkins web site yet, you should.  Someone on here recently sent me these quotes from the book:
    * (first sentences in the book) Your prognosis is excellent! HIV infection is not the progressive, fatal illness it was in the late 80's and early 90's.
    * With the right treatment, HIV infection is now a chronic, manageable disease.
    * If it didn't come with so much emotional, social, and historical baggage, people would react to the diagnosis the way they might if they learned they had diabetes or arthritis.....treatment for HIV is now easier and more effective than treatment for either of those diseases.
    * The development of antiretroviral therapy is up there with the discovery of penicillin as one of the most important and effective medical achievements of the 20'th century, and treatment keeps getting better in the 21'st.  ART has completely changed the outlook for people with HIV infection
    * If you take your medications faithfully, you can keep HIV in check indefinitely, having to change therapy only because of side effects or because better drugs come along....you should plan on sticking around for a long time, living long enough to die of old age
    * ...I do feel comfortable telling my patients that,together, we can almost eliminate the possibility that they'll ever die of AIDS
    * It may be hard to believe now but in time HIV infection may be low on your list of daily concerns, having little impact on the life you lead and the decisions you make
    * ....fortunately, treatment today is highly effective, and deaths from HIV disease are now mostly preventable in countries where therapy is available and affordable
    * ....treatment can prevent HIV infection from turning into AIDS, and it can restore the health of people with AIDS
    * It's also worth noting that most of the other diseases that we suffer from in the developed world are also chronic, incurable, but treatable diseases.  Think of diabetes, high blood pressure, coronary artery disease,  heart failure, arthritis - none of them curable, all of them manageable (though not always as easily manageable as HIV infection)
    * Someday - maybe not in my lifetime, we'll cure HIV infection
    * In about 15 years, we've seen HIV infection go from being an almost universally fatal, untreatable illness to a manageable, chronic disease and treatment became easier and better in the 10 years that followed.

-dave
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline chgo61147

  • member
  • Posts: 2
Re: 4 Months in and not doing all that great
« Reply #8 on: August 27, 2009, 02:47:31 PM »
Thank you all so much. It really helps to hear everything that was said.

Offline CHUCK610

  • Member
  • Posts: 61
Re: 4 Months in and not doing all that great
« Reply #9 on: August 27, 2009, 09:10:25 PM »
Hi Friend,

I am 4 months into this as well, the first 2 months where total hell. I was crying most of the time and so depressed, my anxiety was through the roof. I discovered through talking with the good folks on here that I had to find something that makes ME happy. So, I finally got my Harley and have been riding it for the past 2 months and have put over 1,000 miles on it. It has given me a new outlook and a feeling of accomplishment, And I absolutely love riding.

What I'm trying to say and it worked for me is find something that makes you truly happy and do it. I also see a therapist once a week to help with my anxiety with my diagnosis. I like you do not have any poz friends to talk to except for the people on this forum. I'm not big on group settings so the therapist is a huge help. Yes I have bad days but not as frequent and not as long as they where. Each person comes to terms with this in there own time and in there own way. YOU WILL GET THROUGH THIS.

Continue to come here for support when you need it, it definitely helped me in the beginning.

YOU WILL BE OK   YOU HAVE TO BELIEVE THAT
Diagnosed 5/01/09
cd4 289 vl 20k 20.5%
6/03/09 started med Reyataz, Norvir, Truvada
7/6/09 cd4 463, vl 1,400. 22%
7/22/09 cd4 472 vl 260, 29%
9/1/09 cd4 462 vl 218, 30.8%
10/22/09 cd4 462 vl undetectable (yahoo) 30.6 %
01/21/2010 cd4 537 undetectable  35.8%

Offline justaguy

  • Member
  • Posts: 83
Re: 4 Months in and not doing all that great
« Reply #10 on: August 28, 2009, 12:19:42 AM »
Monday is my 5 month anniversary, so we're all new to this together. :)

Like you, I have good and bad days.  I can't add much to what the others have said, except to agree that you have to take charge and "own" it.  It is what it is, you can't change it.  But what you can do is take steps to manage it.  In fact, meeting someone who had stage IV brain cancer made me realize that it really could be worse.  There are so many things that happen to people every day - disease, accidental deaths, disfigurement, etc.  There are so so so many things out there that could happen to anyone.  So that always makes me feel almost lucky. 

Have you sought therapy?  I started within that first week of diagnosis, and it's really helped.

Estimated infection: 3/2008
Tested HIV positive: 3/31/2009
CD4 136/unknown %/VL 150,000: 4/6/2009
Started Atripla 4/17/2009
CD4 255/19%/VL 409 5/27/2009
CD4 247/??/VL 161 6/27/2009
CD4 257/21%/VL 60 7/22/2009
CD4 352/22%/VL Undetectable 10/21/2009
CD4 490/27%/VL Undetectable 2/15/2010
CD4 397/?/VL Undetectable 7/2/2010

Offline tony_wdc20001

  • Member
  • Posts: 12
Re: 4 Months in and not doing all that great
« Reply #11 on: August 28, 2009, 01:26:57 PM »
I'm barely one month into this and am surprised at how I have been able to manage to date.  There was a period that I was a complete wreck but with close, albeit small, network of support and friends I was able to get back onto my feet within a week.  I will not be surprised when one day you will look back on this period and draw strength from it to get you through your future, which will be a very long one if you adhere to your therapy.

I don't like to use the word "lucky," because if we were all "lucky" then maybe we would not be infected.  However, I do see yourself as really blessed and fortunate.  You know you status and taking steps to control the damage and you have a loving partner to share this journey--good and bad.  Many of us have to travel this journey alone (or without a significant partner) and some do not have insurance or access to care to help keep this virus in check.  

You will the find the courage and strength but I will keep you in my prayers that you will find it sooner rather than later.  
« Last Edit: August 28, 2009, 01:30:49 PM by tony_wdc20001 »
-------
05/08 - Tested negative (oral)
09/08 - Tested negative (blood)
02/09 - Flu-like symptoms
02/09 - Tested negative (blood)
07/09 - Tested positive (blood)
07/30/09 - CD4 147 (12%),  VL 40803
08/13/09 - Started Viramune/Truvada (1 tablet each 1x day)
08/23/09 - Increase Viramune (1 tablet 2x day)
09/09/09 - CD4 380 (22%), VL 207
10/05/09 - CD4 441 (24%), VL 90
10/27/09 - CD4 479 (26%), VL 111
12/16/09 - CD4 455 (31%), VL 50
02/24/10 - CD4 646 (32%), VL undetectable
06/14/10 - CD4 590 (30%), VL undetectable

Offline shreveman

  • Member
  • Posts: 27
Re: 4 Months in and not doing all that great
« Reply #12 on: August 28, 2009, 10:51:06 PM »
Hello:
I am not newly diagnosed, but am getting into the long-term survivor category. Your post caught my attention as it reminded me some of myself when I was first diagnosed many years ago. I felt as if I were going crazy that there wasn't anything left for me in life, etc. - that my situation was hopeless. I isolated myself and felt ashamed in trying to talk to anybody about it, even my own family. I did not deal with it well at all, knew I needed help, asked for a referral to counseling and began going and went for a long time. It made me stronger. Having this disease is a part of you - it's not all of you. Now, years later, I am battling a serious disease that has tried to take my life and is incurable. Through my experience with living with HIV and the strength I have gained from that I have found a place inside me that is at peace. You too have that place inside you. If you look for it too hard it will not come. Just let things be and take them in perpesctive. HIV doesn't have to define our lives. Many times we fret about things that we can't control or that are unknown - we have may fears about what if, the future, etc.  There will be good and not so good days. Focus on the good and positive things in your life and know that you are not alone - there are many on this site who can listen when we need to unload, talk about our problems, etc. As far as meeting other guys who are positive, some hiv resource organizations offer social outlets with casual get-togethers, etc. Support groups exist too, if you feel that is something that might help you. There usually are some options out there - it's just a matter of finding them and making a decision to participate. Sometimes things come together when we least expect it. I hope this will happen for you. Feel free to message me if you want to talk more. R

Offline macaque3

  • Member
  • Posts: 14
Re: 4 Months in and not doing all that great
« Reply #13 on: September 15, 2009, 02:33:33 AM »
I sympathize totally. I was diagnosed in May, and was convinced to start meds immediately by some enthusiastic doctors. I couldn't tolerate either of the first two regimens, liver functions went up, developed a terrible rash to the second. The cure sure has seemed worse than the illness at this early point, certainly discouraging, especially reading so many seeming success stories. Like you, I have felt pretty much like toxic waste at times, and not ready to look for a mate who understands this. Being in a small, if liberal city, i'm not really comfortable going to Outreach, would prefer to look for support groups in chicago. Would gladly hear from ppl if they found certain groups (howard brown, TPAN?) to be helpful. Most of all, i understand the up and down emotions. Felt very motivated and strong to start, and quickly feeling like i've aged 10 years in 4 months, and wondering whether i really want to endure a treatment that will leave me feeling sick most days. I'd like to feel this is temporary, but have no point of reference. I'm sorry to hear you also have had a difficult time, and hope that we both are on the upswing soon.

Offline ocguy79

  • Member
  • Posts: 31
    • Grindr Sucks
Re: 4 Months in and not doing all that great
« Reply #14 on: September 16, 2009, 12:33:24 AM »
Hey chgo61147,
I'm around 6 months now of testing poz. I to felt very dirty as to where i was just disgusted by myself.
As everyone says, it will get better day by day. Some people it will just take longer.
I just started my meds today, When I walked out of the pharmacy and got into my car, I looked at the pills and just wanted to cry, and I do cry sometimes at night.
Hang in there bud, Its not all as bad as it sounds. Just take care of yourself.
This site is a good place to vent your feelings.
3/21/09 - Tested Poz   Tcells/374   VL/109,000
9/02/09 - Tcells/290  VL/189,000
9/11/09 - Approved for ADAP
9/15/09 - Started Truvada, Isentress and Kaletra
6/15/11 - Undetectable - (On same meds as above)
7/20/11 - Started Atripla
12/10/13 - Tcells/620 - VL/0

Offline dshrfrshr

  • Member
  • Posts: 17
Re: 4 Months in and not doing all that great
« Reply #15 on: September 22, 2009, 11:19:55 PM »
Just thought I'd chime in here.  Im approaching 3 months soon, and today was one of my harder days in a while.  Some moments I feel free and can forget all about it, other times I get depressed thinking I ruined my life and future.  I haven't really told anyone yet, which can be hard, but I am still scared it'll hurt my family too much.  I wish I could do anything for another chance to do things right, or go back six months in time and talk to myself.  My first CD4 count was 504, and I'm worried the next might be lower, forcing me to get on meds, and I wont be able to hide that well.  It really helps to read about all of your experiences,  I can feel a little less alone at these times. 
12/30/08 last test -
3/09? seroconverted
6/19/09 tested +
8/10/09 cd4 504 (23.5%) vl 4155
10/14/09 cd4 504 (25.5%) vl 10550
12/24/09 cd4 573 (27.5%) vl 6555
Started Atripla, undetectable since August 2010

Offline macaque3

  • Member
  • Posts: 14
Re: 4 Months in and not doing all that great
« Reply #16 on: October 15, 2009, 12:06:56 AM »
Hey guys, i just read the most recent posts here.  and strange as it sounds, feeling your pain somehow eases mine, knowing that we're in this together, even when we feel alone? I 've been really reluctant to tell anyone, colleagues, family, friends. A few friends have been great, supriisingly. I went into the hospital for 2 days by surprise this week, had to tell my sisters who have been great. I should have known they would rise to the occasion. IT's really tough though to assume the best about ppl when there are some wild cards who will turn on you, I'm told. Unfortunately those ppl probably would have turned for some other reason eventually. Yes, looking at hte meds can be a terrible reminder if you're in that frame of mind. I confess i'm relieved to be off HIV meds at the moment, but i'm now wearing a constant infusion pump for secondary syphilis (proabably from same time as HIV in the spring) and this whole hospitalization had moments of staring my past behavior in the face as my body revolted. however, i was emboldened by eventually telling the docs when i'd had enough testing, that i was agreeing with treatment, but taking control back when it seemed they could go on testing me forever for no clear reason. I think eventually we can all reach that sense of control by taking the meds, and they cease then to be such a stigma. I'll let you guys know when i reach that point if you do the same!
best to you, and hugs too.
larry

 


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