Saturday, August 30, 2014

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.

Saturday, August 16, 2014

"Permission to be Female Please"

I'm going to apologize now for this is a rant. It is me venting and 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 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 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 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.

Sunday, August 10, 2014

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. 

Wednesday, August 6, 2014

Pictures of Us

9 months pregnant!
I've continued to think about the stigma of HIV...and have decided that I'm going to post a few photos of myself, my husband, and our daughter.  I am still struggling to share my real name with you all...but give it time.  I'll get there. I imagine when I do, it won't be a big deal and I'll have worried for nothing, but its where I'm at right now. 
Hope you enjoy!
Our first glimpse!
Family Photo...she is 13 days old here!