I think I trust the Science now

Well, our move to Chicago hasn't been as smooth as I thought it would be. I underestimated the difficulty of the transition, but neither of us regret it...its just been harder than we thought.

My hubby has found a clinic to receive HIV related care...its an hour away.  The doctors run about an hour late on their appointments, and it takes all day to get back home with traffic, but its the best in the area so we're doing what needs to be done to make sure he gets to his appointments. He remains undetectable and in excellent health, and I thank my lucky stars for that.

His psoriasis is worse than ever, and his doctor is working with him on a self-injection to treat it. It will suppress his immune system to use the injection, but his psoriasis is so severe that it needs severe treatment. I don't know if others out there find that psoriasis is an unwanted side effect of the HIV meds, but it has been a thorn in my husband's side since he was on Combiver and Viramune. Has only gotten worse over the years.

We haven't attempted to have unprotected timed intercourse to conceive since we've been here in Chicagoland, but we are talking about trying again since things are feeling a tiny bit settled. I have the worst baby fever ever...all day long I look around at all the babies and I swear its like a part of me...something deep deep down inside is screaming, and clawing and scratching to get out. Its choking me. Its relentless and its painful. Its such a weird phenomenon.

I am not taking Truvada (PrEP) anymore. I haven't been to a doctor yet. There is a PrEP clinic here, where my husband receives care, but guess what? Because he is undetectable, and has been for many years, I'm not considered at high risk of contracting HIV, and therefore not eligible to get on PrEP! I know I could really insist, especially if I pushed on wanting to use it for conception, but I don't think I feel that strongly about it anymore.

I think I trust the science now. I think I have let go of some of that fear that was instilled in those of us who lived through the early years of HIV and AIDS. I think.

Last time I thought I could try to conceive without PrEP, and have unprotected sex, I actually couldn't go through with it. But this time, I think I can. I'll keep you updated.  In the meantime, here's a picture of us enjoying the lovely cold and snowy weather!

Lots of Changes

My husband and I have made the difficult decision to move across the country from San Francisco to Chicago. We feel it will be best for our daughter to be near other family members, and I look forward to having my family's support around me. We are scared, but confident this is the right decision for us.

We are concerned about my husband maintaing some type of healthcare. He can't miss doses of his medication, but we will have a lapse in insurance coverage so I think we'll find ourselves in the position many people find themselves in...needing access to healthcare at a reasonable cost.

We are also concerned about encountering ignorance and prejudice due to our HIV affected family dynamic. I don't think we'll tell many about my husband's condition, but I can foresee inwardly cringing when people make inappropriate comments about HIV, such as this sign on a condom dispensing machine in Chicago.

I mean, first of all, no one transmits AIDS...its HIV which progresses to become AIDS if left untreated. And, no, the best method of AIDS prevention is not abstinence before marriage nor is it a monogamous relationship during marriage. This is such a patronizing and ignorant statement.

My mom and dad are thrilled that we'll be closer to them, but I worry about how uneducated they are about things related to HIV and treatment. My husband has psoriasis, and I can see them thinking that his irritated skin patches are the beginnings of Kaposi's Sarcoma. I know they will say things, with ignorant sincerity, that will be hurtful. And I want to react with love, compassion, wisdom, and grace...for my daughter's sake. I hope I'm up to this task of bringing their 1980's AIDS mentality into this age of treatment as prevention, and educating them about all the medical advances and knowledge that is available to us today.

In the meantime, I'll be ovulating next week, so who knows....maybe I'll get pregnant!

Lots of changes coming our way, I'm grateful for all of you who wish us well, and have been part of this journey.

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.