Victim or Patient

I read many blogs where people call themselves victims of HIV or AIDS. But I just don't buy it. I see myself as a patient, not a victim. A victim, to me, would be someone who was raped, or did their best to have safer sex all the time but still got infected or like Ryan White, a hemophiliac that was infected by tainted transfusion.

As much as I hate myself now for it, I did not play safe as a teen. It is no one's fault but my own. And I am not a victim. I have no one to blame but myself. I knew the consequences of barebacking but chose not to use condoms because I "didn't like them" - and now must face the facts. I don't expect pity or anything from others, and all I can do now is try to reduce the amount of suffering my loved ones feel should I get sick and die.

As much of an inconvenience as taking meds may be, (which right now it's not much of one) i will not complain. And should I be bed-ridden in a hospital in a month or 6 months or whenever, i will still be happy.

Had I been diagnosed 10 years ago, I might have started treatment immediately. By now I might have been a salvage case - resistances to most drugs and not many options left. Where being diagnosed late, i might have a higher chance of progressing to full blown AIDS, but i've had 10 wonderful years with my family and significant other that I love with all my heart - and might still have some more years to enjoy their company.

I'm sort of glad that my dad passed away in March. Now he won't have to watch should I die from AIDS in the future. I wish that B or my remaining family wouldn't have to live through that either.

How We're Coping

When I found out I was HIV+ it wasn't a huge shock.. I had been suspicious for a few years, back when we were still living in Conroe.  It was more a confirmation.  I know I should have gotten tested when I started to suspect, but I wasn't ready to face the financial burden.  Luckily, my health insurance has been really good on covering most of the first two rounds of Atripla.  We'll see what happens in the future.  Side effects of meds are much better than they used to be.  And i knew the HIV+ status isn't the death sentence that it used to be in the early days of AIDS.  SO i wasn't really scared of the meds themselves,  just whether I would be able to afford them.  I think B was more scared than I was and needed some reassurance that i wouldn't be gone in a few months.  But he seems to be more comfortable with the situation.  

Mom and sis are both doing alright.  Mom had sort of suspected as well, but when i told her, naturally it upset her.  But she's been a great help.  Sis has her hands full with a baby so we haven't had much contact other than an occasional phone call.  But when she found out she was a great help in finding links for possible options (charities, funds, med assistance, clinical trials links, etc).

Bringing you up-to-date

Hi friends,  I should have started this weeks ago when i found out my HIV status.  Nothing has been going on for the last couple of weeks so I don't really have anything new for those who already know.  As blood work is only every now and then, I probably won't be posting but to give updates on T-cell counts and Viral Load counts.  Or maybe I'll occasionally have a rare epiphany that I decide to write about.  So i expect posts may not be very frequent.  I'd prefer not to expose my real name or the names of my doctor or family members just because I like to keep my privacy and who knows who comes through these blogs.  From what I remember from grade school/high school, I tended to ramble and write in a stream of consciousness-style.  But hopefully it's not ALL over the place and hard to follow.   So here it goes.

So for those of you who know me that don't know.  I wish I could have told each and every one of you in person.  But this is the only way for some of you.  As you can probably deduce by now, I'm HIV+.  I found out in early April '08 when I went in to my primary physician due to a lung infection i was fighting for a few months.  My GP asked if i would consider the test and I was going to ask about it anyway due to some other health problem i had back at the end of 2006 that they never could figure out what was wrong.  Then this new infection.  

My GP referred me to an Infectious Diseases specialist and later that same week I was in consultation with the new doc (I will call him Dr. C from now on).  Two pages of blood tests and a week or so later i found out how bad it was.  My CD4 count was "less than 20" (normal healthy person is can vary between 800 and 1200), and my viral load (or number of copies of the virus per milliliter of blood) was really high at about 669,000.  Dr. C suspected I've had HIV for about 10 years, which is what I figured when I was told i was Positive,  as that was the last time we got tested due to a scare from a past encounter I had that got in touch with me to tell me he found out he was positive.  Because my CD4 was so low, Dr. C put me on Azithromycin and Bactrim for prophylactic  purposes.  And once the results of one of the tests came back to determine if the strain of HIV in me had any resistances, i was prescribed the HIV drug Atripla.  The first one pill/once a day multi drug regimen on the market.  I've been on the med for about a month now and I go in after Memorial Day for my next round of labs to see what's going on with my CD4 and Viral Load.  And June second is when I will get results from Dr. C.

So far things have been pretty good.  I was worried about my partner (B from now on) when I told him i was HIV+.  For a couple of days I was afraid we were done for.  But he's been great, as have my family and friends that i've told.   When i started on the Atripla i had a week of severe fatigue.  I could barely get out of the bed and barely do anything.  But the following week started to feel better.  And now i've been going along all day this week only getting worn out towards the end of the evening.  I've been eating like a hog... which is better than the way I've been eating the last few months or even the last couple of years.  Since my last appointment on the 5th of May I've gained about 10 pounds or more.  Won't know the official weigh-in until the 2nd since the nurse does the quick fully dressed weight instead of actual weight.  

I've had very few problems with the Atripla, and i'm happy about that.  It's a bit annoying in it's effects where if I have to get up in the middle of the night to go to the bathroom, it's like I'm walking in a straight line but someone's giggling the room around.  And I have vivid dreams, but not nightmares.  But come morning, i always feel fine.  So it's been a relatively uneventful experience.  Which is better than I can say for other experiences I've read about of people on other meds.  I just hope Atripla is effective in me and that it's a long time before my HIV build a resistance to it.  It's expensive enough on alone.  If I have to buy three or four different meds each month, that would get out of control.  I'm already trying to find drug assistance programs that I might be able to qualify for to help cover the $20,000 a year cost of Atripla.  

In case you're wondering.  B is still negative after we've been together 10 years.  I know we were worried that we would both be positive but his test was negative.  A giant weight lifted off both our shoulders.  I wouldn't have been able to live with myself if I had given it to him as well.  I know the rapid tests are supposed to be 99.8% accurate but I still hope he'll get a full blood test sometime just to make sure.