I hope HIV dies

Take a look at this image. If you want a better look, click this link.

You may remember a few blog posts ago, I said that I wanted to see one of my husband's HIV infected cells. I talked to a doctor about it, he told me that it would be difficult to see, but even if I could see it, I would probably not see HIV in his cells since his viral load is undetectable. He said something to the effect of "His cells would probably look similar to yours."

But I still wanted to see HIV. So, I came across this image. And I have all kinds of feelings that come up for me when I look at it. 

First, you know how you are not sure if you want to look at something....like if there was a "GRAPHIC" warning on it, you might hesitate for a split second and ask yourself, "Do I really want to see this? Am I prepared for what I might see?" And then you go ahead and look at it to find it is much more horrific and disturbing than you thought. Well, that's my first feeling. 

I stared at this image, wondering why I was having all kinds of feelings. But I guess its just because the image depicts something so violent. Then, I found this video showing a cell to cell transfer of HIV (scroll down the site's page to get to the video).  I found it to be very disturbing, so just warning you.

Its as if the HIV rapes the cell, takes its power, and then makes that cell turn around and do the same thing to other cells. I use the word "rape" because it seems savage, abusive, offensive, dominant, destructive, and humiliating. And doesn't it seem like the healthy cell is desperately struggling to get away? Trying to save itself? 

It makes me angry that this is what happened inside my husband's body just about 20 years ago, and what would continue to happen if he was off his meds. I hate that such violence takes place in his body on this micro level. I feel angry at how unkind HIV is to him. I wish I could jump in and stop it, but I can't. 

I'm grateful that his medication essentially over powers and outwits the HIV which bring health and vitality to his life. But I still can't help but feel upset. I've finally gotten to see what HIV looks like...and its not pretty. Fuck you HIV. I hope you die. 

A Human Level

In 2009, I asked my primary care doctor if she would prescribe PrEP for me so that I could conceive a child. Her answer was a devout NO. You can read my blog post about it here.

With the recent articles, videos, and book on our story and the subject of PrEP for women, I often wonder how that doctor feels about my story today and the role she played during the journey.  Would she still say NO today? Does she feel vilified?

I can certainly see the reasoning for her initial refusal to prescribe PrEP for me.

She was a primary care doctor, not an HIV specialist, and the global discussion on HIV and prevention options were not as "mainstream" as they are now. Even today, I imagine a lot of primary care doctors are not up to date on their information regarding HIV prevention strategies (other than condom use), but we are hearing more about it in the mainstream than we did before. It was 2009 when I talked to her about prescribing PrEP.  The iPrEx study didn't announce its findings until late 2010, and PrEP wasn't approved as an HIV prevention tool by the FDA until 2012.

I don't fault her for not wanting to prescribe me something that was not yet approved by the FDA. But, I resent her judgmental tone, and lack of dialogue on the subject. I feel the responsible thing would have been to have a discussion with me about resources or alternative ways we could get pregnant, I was just too upset to push for this discussion with her at the time.

I wonder if deep down, she might have thought that our wanting a child was selfish and irresponsible. People write these sort of things to me all the time in the blog comments, I don't publish them because its such an ignorant response, but through my blog, I know first hand that a lot of people feel those with HIV don't deserve a chance at love, or parenthood.

I wonder if she's read the articles and book or seen the videos.  I wonder how she feels knowing that I was able to achieve my dream. I can only hope that she's learned not to stand in the way of someone else's dream.

The medical field is so prescriptive and scientific that, at times, it doesn't allow for humanity. If she would have taken a moment longer with me....asked more specific questions, I know her and I could have found a way to have a heartfelt conversation about my desire to have a baby. Doesn't mean she would have changed her mind, but we would have connected on a different level...a human level.

I've had the wonderful opportunity to speak to medical providers in classrooms and on panels and I always remind them to really listen and connect with their patients. Doctors connecting with patients on a human level is so important. It builds trust. It allows for patients to process their own illness, or a family member's medical condition. It allows a doctor to see links or patterns of behavior, to get a "hunch' that could lead to completely different diagnosis. It helps us hear each other, understand each other. It makes doctors better doctors, and patients better patients.

And at the very least, it makes us human...and don't we all need a bit more human connection these days?

PrEP on the way!

About two weeks ago, I went to an appointment to see about getting a prescription for PrEP.  I kept putting it off, thinking that if more time went by, I would become comfortable with the idea of unprotected sex to conceive without PrEP.  But I couldn't get comfortable with it, so to the appointment I went.

I was scared that I'd have another experience of the doctor refusing to prescribe it, and then hurling ignorant judgmental statements at me for even considering having unprotected sex with my husband...PrEP or no PrEP. But if we want to have another baby, then I'd just have to deal with whatever came up at the appointment. So, I called and the woman who answered seemed a bit rushed...I told her I'd like to make an appointment with the Dr. She asked what was the nature of my wanting an appointment. I said, "I'd like to get a prescription for PrEP."

Suddenly I was aware of my pounding heartbeat, and held breath, waiting for her response. She said, "Oh, you can see the Physician's Assistant (PA) for that, we can get you in sooner that way." Oh my goodness. The relief. The acceptance. The lack of judgement.

As the appointment date drew closer, I began to have a fear that I would seem out of place in the waiting room.  You see, this doctor treats many HIV (and non-HIV) patients in the Castro District of San Francisco. I thought I'd be sitting in a room full of burly men with large mustaches, tight leather pants, and studded black boots. And they'd all look at little ole' me and wonder what in the hell I was doing there.

But, the patients in the waiting room all looked "normal." And I realized...how judgmental of me! What is "normal" anyway?

Needless to say, the PA ordered some blood work and then told me if all is normal on the blood work, she will send the prescription electronically to my pharmacy. She made sure I knew to take it every day, get blood work done every 3 months, and to be aware of side effects.

As I walked out of the office, I felt relieved that it went so well, and once again realized that the fight to have a baby with my husband was behind me...

Security of PrEP

Well, when it came down to it...I couldn't do it.  I couldn't have unprotected sex to try to conceive, without PrEP. My husband was always a bit apprehensive about it, but I insisted that I felt comfortable and confident that my risk was practically non-existent. (I still think my risk is practically non-existent, but that's different from entirely non-existent)

For those who don't know what PrEP is, it is a new HIV prevention strategy for HIV negative individuals, who are exposed to HIV, that reduces their risk of becoming infected. It consists of taking an anti-HIV medication called Truvada, once a day before coming into purposeful or accidental contact with HIV.

We had discussed it, and made the decision to try to get pregnant without using PrEP this month.  I began tracking my cycle using an ovulation monitor.  Things were progressing as planned and I began daydreaming about how I'd react to a positive pregnancy test. Thinking about how I'd tell my husband, how we'd tell our family and friends, what a sweet big sister our daughter would be, etc. But the first morning that showed an increase in hormones that trigger ovulation, I was struck with the teeniest amount of fear. Suddenly that almost non-existent risk seemed significant. And for the next two mornings, that fear grew. On the morning the monitor showed I'd be ovulating, I knew in my gut that I couldn't go through with it.

I realized I need to have the security of PrEP as a safeguard in our efforts to conceive.

For me, the smallest, teeniest and most nominal amount of risk was monumental. It felt like stepping over a crack on the sidewalk and jumping over the Grand Canyon at the same time....either way, there was no way I was going to cross over.

I started to pressure myself, knowing that I'd have to make the decision THAT day or else wait another month to try to conceive. I thought about all the data, research, studies, etc. that shows low risk.  In the end, I thought about the moment I'd be looking at a positive pregnancy test again...and I decided that I only want to feel joy and elation.  I don't want even the smallest, teeniest amount of uncertainty because it would cloud over the moment for me. And I've fought too hard and too long to such a moment be anything but joyful elation.

To PrEP or not to PrEP?

Still debating whether we should use PrEP for Baby #2.  Husband says yes, I say maybe not. He has been undetectable for over 10 years (with a slight blip here and there), and I'm not sure I want to expose the baby or myself to the potent medication that is PrEP...

3 years ago I wouldn't even have thought there would be a choice between taking PrEP or not, but the more I research and learn about an undetectable viral load, the more I'm learning that the risks to me are minimal.  But are they minimal enough for me to have condom-less sex in hopes of conceiving?

My parents freaked out when they learned that I used PrEP to get pregnant the first time, they felt the risk I took was careless and the decision wreckless, but they finally came around once they believed I remained negative and the baby was healthy and growing normally with no defects. (Yes, my parents sometimes think that I'm lying about my negative status and that long ago I may have contracted HIV from my husband...my mom demanded to see my HIV negative blood test before she could celebrate having her first grandchild...but hey, I give people room to react remember?)

I have to admit, even though I found a doctor to prescribe me PrEP before, I am a bit nervous about bringing it up with a new doctor--given my first experience.  Read about it here. The last doctor who did prescribe it to me, was an HIV specialist.  This meant I had to go to an HIV clinic every month for a check in and bloodwork....not very fun (but good for me to confront my own stigma around HIV). Its just not an ideal place for an HIV negative female to receive primary care...in fact, the internal paperwork they used to order my monthly blood work didn't have a code to order an HIV test.  Why would it?  Its an HIV clinic...where people who are HIV positve receive specialized care. But still, there I was, month after month, telling the lab professional that, YES, I was there to get an HIV test among other things, NO, you're not reading that wrong. 

If all goes well, I'll be ovulating next week...maybe we'll try without the PrEP...maybe not. 

Is HIV Beautiful?

I first heard my husband talk about his HIV status in passing to a mutual friend. That's how I found out he was positive.  Long before we dated, long before we were even friends...barely just acquaintances, and he was so open with disclosing his status.  I found out last week that prior to telling my parents about his status, he was quite open about it with everyone he came in contact with...and then when my parents found out, he completely shut down.  He stopped telling people, and started living under a blanket of shame from that point on, to this very day today--going on 12 years now.  Amazing how a small moment in time can be so defining for a person.  Equally amazing, how such a tiny cellular thing can cause such a reaction in people.

I want to see this tiny cellular thing. I want to see HIS HIV with my very own two eyes. I want to see what it is that requires him to take these powerful medications, and causes him to feel ashamed sometimes. I want to see what I'm protecting myself against when we use a condom to have sex. I want to know--what does it look like?  How does it move? Does it have a color? Shape? Is it ugly? Is it beautiful?

Its so microscopic and yet so big between us that I feel this sense of wanting to see it, to understand it.

I've done a lot of research about it.  I've talked about it. Cried about it. Worried about it. Written about it. Lived with it...and now I need to see it for myself.

Nanny Fears

We hired a nanny this week to care for our little one while husband and I work...our schedules no longer allow for one of us to be with her every day at home.

As we were prepping for the nanny to start this week, we cleaned the house and put away some personal items such as mail, bills, etc.  As we were cleaning, it occurred to me that maybe we should hide my husband's HIV meds (they are in an area near the kitchen counter), just in case the nanny sees them, googles them, and freaks out!

His "meds area" looks like a small pharmacy.  He takes the HIV meds, but also arthritis meds, psoriasis meds, headache meds, fish oil capsules, vitamins, and general pain meds. There are many more than what is visible in this photo...

I left it up to my husband to decide whether he's comfortable with his meds out in the open like this....he didn't remove them or hide them.  I'm proud of him, but am still struggling myself...fearing that if she googles the names of these meds, she's going to stop being our nanny.  I know that if she does quit on us for this reason, we're better off without her, but its just the realities of our situation. People treat you differently when they know you're HIV+...its unfortunate, but true. 

It took us months to find this nanny. She's great with our little one, she cooks, cleans, and drives! We are comfortable leaving our daughter with her. We've known her for almost 15 years, but she doesn't know his status.  I guess she will now!