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!

All-American Truvada Family

My husband and I are thinking about having another baby.  So,  I will need to find a doctor to prescribe me Truvada. But this has got me thinking....do I want to start PrEP indefinitely regardless of if we're trying to get pregnant?

I don't know. I keep going back and forth between Me on Truvada, and Me Without Truvada.

Me on Truvada: I think I'd feel uneasy about using Truvada alone for HIV prevention purposes. And I'm not sure how my husband would feel about it....probably more uneasy than me. We have both felt very safe and secure using condoms...and we've been very responsible to use condoms since Day One.

Me on Truvada: The thought of not having to use condoms....how amazing that would be! There have been times we weren't able to have sex because we were out of condoms, or couldn't afford condoms. They aren't cheap you know. (I know we can get them for free but I usually don't feel like asking, and I don't get to pick my favorite models and brands--and there's usually someone holding out a basket watching me pick through the pile...its just not ideal) But thinking of the new level of intimacy...without a condom between us is so tantalizing. We could just be "in the moment," have sex with more spontaneity and romance...I know they say you can make applying a condom part of the foreplay but who are we kidding, applying a condom takes away from the moment.

Me on Truvada: What joy to think about a surprise positive pregnancy test, 9 months of preparing for baby (and hoping for a boy this time), labor and delivery...another little baby. So sweet and such another little miracle.  With both of us on Truvada (my husband currently takes it as part of his regimen), and two babies conceived using Truvada...we'd be the All-American Truvada Family!

Me Without Truvada.  Condom use is much safer for me in terms of medical side effects and additional toxins in my system.

Me Without Truvada: We wouldn't have to get his lab work done monthly...not an easy thing to schedule with a full-time job and toddler, and not an easy thing to pay for either.

For now I think I'll just try to find a doctor that will prescribe it for me and go from there....we don't have to decide right now.  Stay tuned!

What's Most Important

After a few posts of processing things that were making me angry and bitter, I decided today will be a day that I come back to what's most important.  My husband and my little girl, and how having a little family was all made possible by many people who are fighting a fight who do not get enough recognition, pats on the back, gratitude, publicity, or understanding.

I am just amazed by all the people who fought and paved the way for me to take Truvada (PrEP) and get pregnant...Shannon Weber, BAPAC's Dr. Cohan, all the doctors that I'll never meet, who made it their life's work to learn about and treat HIV and more importantly, who keep working to find a cure for HIV. The HIV advocates who bring HIV awareness to the forefront when we all start to forget.  The journalists, like Heather Boerner, who found enough interest in this subject that it inspired her to write a book and many articles about HIV and PrEP (Positively Negative...Read it!)

These people were fighting for ME. They had my face and my name on their mind when they felt discouraged and defeated...they kept pushing and challenging the status quo, fighting...so that I could hold my baby in my arms.

And then there's my husband.  For 14 years he let me fervently chase down my dreams, went to the many doctor appointments with me, rejoiced with me when a door opened, and mourned with me when that door shut.

It is his voice in my ear, telling me to keep pushing, encouraging me as I labored, and crying so sweetly when our baby was laid on my chest...it is his voice that was the loudest and for that I am most grateful.  He really is the love of my life.  He is my heart and soul.  He is everything.

Time to Heal

Flashback to August 14, 2012 where I'm in the bathroom looking at a positive pregnancy test, and surprised by the first emotions that are welling up inside of me. Not joy. Not elation.  Not excitement. But BITTERNESS. SADNESS. REGRET. A sense of deep regret that it took 14 years to end up where the journey first started...with the idea of taking a pill to reduce risk associated with exposure to HIV. I felt (and still feel) that the medical community failed us. And said failure was caused to some extent by the stigma of HIV and by people being scared to put themselves in my situation and do so without their own expectations or ideas being projected onto us.

When I began seeking information about how we were going to have a baby of our own...I did not think it was going to take 14 years until we had the answer.  In that first meeting with my boyfriend's (now husband) doctor, she told me to research something called "sperm washing" as the only way to safely conceive a baby of our very own. I recall asking her if I we could try unprotected sex to conceive, and then have her prescribe the medications that medical professionals take after an exposure to HIV (It is called Post Exposure Prophylaxis or PEP).  She told me she didn't think she could prescribe it to me because the exposure had to be accidental in nature....and it was usually only prescribed to the medical or law enforcement community, in case they were accidentally exposed to HIV as an outcome of working in their fields.

I recall thinking that if I could advocate for people in my situation to have access to PEP, it would be a good place to start...and it seemed hopeful and logical that it could be available to the general public someday.

I am eternally grateful for all those who helped us have a baby...but can't help but feel sad...deep deep sadness that it took so long, so many doors closed in our face...and so much suffering to end up where we started.  With me in a doctor's office, asking about a pill that could be taken in the event of exposure to HIV.  Why did it have to take 14 years?  14 years!  Over a decade!

I've been reading and re-reading the book Positively Negative by Heather Boerner, and find that it has caused me to think and re-think about some of the aspects of my journey.  I also find that I've been getting emotional and crying because I realize the struggle is finally over.

It is finally over.

No more brainstorming about how I could get my insurance company to pay for sperm washing, or how I could get the CDC to hurry their timeline in developing guidelines for IUI with HIV washed sperm, or how I could get $30,000 to afford 2 rounds of IVF.  No more wondering who I could talk to, which websites to visit for more information. No more looking for a support group or forum with other women and families in our same situation. No more aching and feeling actual physical pain from the lack of holding a baby in my arms.

No, the journey is over.  The seeking is over. That chapter has been written.  The trauma of feeling that deep yearning, with no solution in sight is all in the past.  I have to heal now. And I guess that's what the crying is about.  Time to stop warrior-ing, time to stop fighting.

Time to close my eyes, smell my daughter's sweet sticky cheeks, smile....and heal.

"Permission to be Female Please"

I'm going to apologize now for this post...it is a rant. It is me venting and processing...it is the reason I started this blog. To share my journey of venting and processing. So....
A few weeks back, I was part of a TwitterChat, and @HeatherBoerner asked me if I considered Pregnancy and PrEP (Pre-Exposure Prophylaxis) to be a feminist issue. I was quick to respond that No, I didn't see it that way...for me it was a personal issue.

Well you know what...I changed my mind.  It IS a feminist issue. And the more I think about it, the more angry and offended I become.

When I think back on this journey of trying to get pregnant, my lowest point was the day my primary care doctor told me she would not prescribe Truvada for me, because it was an "unethical" thing for her to do, nor would she continue to treat me as her patient if I engaged in such "risky" behavior. I now understand part of why that was my lowest point...being shut out because I am a woman.  I knew my anger had to do with the injustice of it all, but I thought the injustice was because I was at the mercy of a system that requires one to have a lot of money to conceive in a way they perceived as "safe."  I thought it was a human issue, an elitist issue, an insurance issue, a medical issue.

But it was a feminist issue.  I was not being prescribed Truvada because of the fact that I was using it to try to conceive.  I was being judged for my sexual choices, my maternal calling, for my own decisions about my own body. That's a bunch of bullshit.

How different things would have been had I told that doctor I was just trying to stay negative. She probably would have prescribed it because she would have agreed with that logic.  Or, what if I told her I had sex with my husband and the condom broke...she probably would have prescribed it, because it would have been "unethical" for her NOT to give me Truvada.  What the hell?! Here I am trying to be open and honest, trying to lower my risks, asking for help to stay negative, asking for help to get pregnant...pretty much asking for permission to be female...and the door is slammed in my face! So rather than lowering my risks...she increased them...How "UNETHICAL" is that?

I am beginning to think that honesty may not always be the best policy when it comes to my choice of marrying my husband, and having a baby with him.  People have asked the weirdest and most personal questions...as if they have a right to ask about my sex life just because I've shared with them that my HIV+ husband and I had a baby. And I've let them.  I've answered those weird and personal questions because I didn't want them to feel awkward with a response of "That's personal" or "How is that relevant?"  And isn't that the feminist issue...giving away our power, or having that power stolen, and as females, always fighting for our equality?  How does being a woman determine how I can feel about something...how you can feel about me...or how you can treat me?

Ugh.  I could go on about this, but you get the picture right?

I am not a human-sized uterus. I am a human sized HUMAN.

The Story of Her

When I opened my very first bottle of Truvada, the first thing I noticed was a small cylinder container of silica beads. (Put there to keep the Truvada moisture free) I didn't know what to do with it, but I felt an urge to save it for some reason, so I decided to set it on the edge of a shelf in my hallway closet.  I was certain I would get pregnant immediately, so I didn't think much more about those silica containers in my closet.  Of course, as the months wore on, and I opened more and more bottles of Truvada, I ended up with quite a collection of those little containers. When I ran out of room on the edge of that shelf, I put the little silica containers in a decorative box that was covered with shiny bronze fabric and metallic rivets. I saved every single one of those silica containers from every single bottle of Truvada that I ever used. I realized I was saving them to show to my future child, a visual aid of sorts, for telling our little one the story of how badly we wanted them to come to us that we spent years and years chasing information, chasing options, chasing doctors...chasing our dream.

When I found out I was pregnant, the silica container from my last bottle of Truvada was already in that box, and I didn't give it another thought until just a few nights ago. I was with a group of people, talking about the book, Positively Negative and the memory of those containers came to mind.  I looked for that box in my closet today. It took some digging around, but I found it. Here it is!

I opened it up to find 17 of those little silica bead containers. I took them out, counted each one. Studied each one as I slowly spun it with my fingers.  Shook them next to my ear, listened to the tiny beads shake around in their cylinder cases. And suddenly, all kinds of memories flashed in my mind, like a slideshow...different scenes and different moments of the journey.

Funny thing is, there were other things inside that box.  A scentless Lavender satchel envelope, an old pair of my husband's sunglasses, and 3 disposable cameras.  Kind of ironic, that box is full of old, irrelevant, and expired items.  

Are those little silica beads irrelevant now?  In theory, yes.  But they serve as proof of our journey, proof of what my mind remembers. Sometimes it feels like a story to me, not moments lived...just words that portray the sorrows, the longings, the unquenchable desires. The moments of promise...of grace...of elation, all sprinkled throughout the story. They are all that's left of the long journey.  I'm so glad I saved them!

Here's my daughter playing with them. She loved to shake them, and listened to the sound close up to her ear. She doesn't know it yet, but those little containers contain the story of her.