tag:blogger.com,1999:blog-30439391656010465822024-03-14T01:22:08.508-07:00HIV Negative SpousesA blog for HIV negative women that have HIV positive spouses and would like support around this issue.poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-3043939165601046582.post-42591084172969289682017-07-06T20:56:00.000-07:002017-07-07T14:02:33.366-07:00To Tell or Not To TellEvery single day I study my daughter's face and notice her expressions, the way her lips move, her eyes, the highlights in her hair...and every single day I acknowledge the miracle that she is. The miracle I longed for and fought for. I don't take her for granted. She is ferociously loved and adored. Perhaps the most loved child that ever lived. I love her from the deepest crevice of the core of the earth to the farthest star in the farthest galaxy.<br />
<br />
She is my miracle PrEP Baby.<br />
<br />
Last night my husband and I were talking about the lovely weekend we spent with our neighbors. We were in the common backyard with all 11 children playing in the assortment of inflatable pools and running through the sprinkler obstacle course and dodging the spray from the array of water guns. Sometimes our house had the closest sink to refill from, and another neighbor's house had the closest bathroom, and still another had cold beer in the fridge where we could go help ourselves. Point being that as neighbors, we trust each other, and look out for each other, and care for one another's children. Its the life I dreamed of for my daughter.<br />
<br />
In our conversation I asked my husband what he thought would happen if somehow the neighbors found out about his HIV status. Let's say, one day our daughter is playing at the neighbor's house or at school and says something like "My dad takes medicine for HIV." Without hesitation he said, "They wouldn't let their kids come over to play anymore." And I agreed.<br />
<br />
We don't know yet how or if we will ever tell our daughter about her daddy....or that she is a PrEP Baby. It just feels like there is so much at stake if we're honest with her, and so much at stake if we're not. Will we lose the All-American weekends with neighbors? Will Macey stop being invited to play with the other kids?<br />
<br />
I hope one day the answer of whether to tell her or not, will come to us, just drop into our laps out of thin air the way the Miracle of Her came to us. One day the miracle wasn't possible, and the next day...it was. Maybe that's how it'll be.poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-21602792909079471482016-08-12T18:30:00.002-07:002016-08-12T18:51:08.084-07:00Low PointsI love all of you that reach out to me asking for help and support on the issue of being a person whose life is affected by HIV. I thank you for trusting me with your stories and the personal details of your life. Your secrets are safe with me ;)<br />
<br />
Lately I've felt the urge to speak with you all in person. I want to hear your voices, and let you know that there is a live human being somewhere on this planet who is going through life facing the same challenges, asking the same questions, dreaming the same dreams, wondering the same thoughts, and needing the same help as you. And so, I was speaking to a woman who reached out to me tonight.<br />
<br />
In my conversation with my new friend, we spoke about miracles. And I got to thinking about the many miracles that were part of my own journey. And I realized that I am at a place of seeing my past differently. And I began feeling thankful for the ups AND downs of my journey because all of it is a miracle.<br />
<br />
My soul has bullet holes of low points. Very Low.<br />
<br />
Void of hope Low. No way out Low. Center of the earth Low. Nothing left to give Low.<br />
<br />
And now I see those low points as sparks that ignited into miracles. What a miracle it was that I found <a href="http://thebody.com/">TheBody.com</a> in 2000, when there was nothing on the internet about HIV/AIDS, and the idea of having a family was validated! What a miracle it was that I kept searching for ways to start a family, after so many doors were slammed in my face. I experienced the miracle of letting go of dreams I didn't even know I had until I realized I couldn't have them. I found the miracle of support in friends and medical professionals at <a href="http://www.hiveonline.org/about/" target="_blank">HIVE</a> who fought for my dream when I couldn't fight anymore. I was given the miracle of modern day medicine and conceived a little bundle of miracle that grew so beautifully and peacefully in my belly for 40 weeks.<br />
<br />
I could go on and on, but I say all this to encourage you. There will be disappointments on your journey. And there will be low points. But in my experience, life's detours often dead end into miracles. And sometimes you can't see them in the moment, but just on the other side of those tears and lost dreams...the miracles are there. Trust me. They are there.<br />
<br />
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-60794088525895726992016-05-31T15:27:00.000-07:002016-05-31T15:27:01.879-07:00Life's RegretsI've been doing a lot of thinking lately about our situation, and starting to come to terms with the possibility that we may not have another child. Despite our efforts, its just not happening.<br />
<br />
My daughter is three, and I feel like I've failed her by not giving her a sibling. I want her to grow up with someone to play with, someone to feel connected to, and someone to share her childhood story with. But its probably not going to happen. I'm so sad about it.<br />
<br />
She is a miracle, and I am so grateful for her. She is enough. I don't need another child for my sake, but feel we need it for her sake. I've been asking a lot of friends of mine who are only children how they felt about it, and most admit there was always a deep loneliness and longing for companionship as children. I want to protect my daughter from every feeling lonely, or longing for something, but I just can't give this to her. And I can't find it in myself to be OK about it.<br />
<br />
I just keep thinking that we should have tried to have children sooner, when we were younger. It would have given us more time to try for another child. And then, part of me feels like for us...one child is really all we can handle. Being a parent is hard. Giving of yourself to a child is hard, and in all honesty, I'm not sure its something I could do well for a second child.<br />
<br />
I wish things had turned out differently, but its hard to accept. I'm sure there will come a time when I can look back on this and see the good in having just one child. And I am going to give her everything I can to provide her with an emotionally fulfilled, well-rounded childhood...but I can't be everything to her. And I will fail her. And I need to come to a place of being ok with that...for her sake. My life's regrets are not her burden to bear<br />
<br />
Its like we just missed the "sweet spot" with PrEP and all the strides on HIV and reproduction. If we could have been 5 years younger....even 3 years would have made a big difference. But it was not to be I guess. Stupid HIV.<br />
<br />
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com2tag:blogger.com,1999:blog-3043939165601046582.post-11327844668138790132016-01-19T14:41:00.000-08:002016-01-19T14:41:01.718-08:00Tiny Explosion of PanicI ovulated last week and we had condom-less sex in hopes of conceiving. We've done this before, but this time it was different. <br /><br />This time, I wasn't on <a href="http://www.cdc.gov/hiv/basics/prep.html" target="_blank">PrEP</a>! <br /><br />It has taken us years to get to this point, and we both felt very comfortable with this decision. The last time I thought I could go through with condom-less sex, it ended up that I couldn't. As I mentioned before, I am starting to trust the science about how low my risk is because he has an undetectable viral load.<br />
<br />
Of course, I gotta be honest, there have been a few times when the thought crossed my mind..."What if I got HIV from him?" Its weird when that happens. It feels like a tiny explosion of panic. Like when you're driving somewhere and you realize you forgot something important back at home. And you gasp, and you don't exhale for a while. And for that moment that you can't breathe...you come to terms with it. You either decide to go back for what you forgot, or you keep driving and decide to do without. So, when the panic hits me. I just push the thought away. Its probably not the healthiest way to cope with the anxiety, but I know it will pass so I just push the mental "Next Track" button in my mind.<br />
<br />
There has been enough negative energy given to the subject and stigma of HIV in my life. For now...for today, I don't want to give it anymore negative energy. So, I just dismiss it. I may feel different tomorrow.<br />
<br />
For now, I trust the science, and that's enough for me.<br />
<br />
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com2tag:blogger.com,1999:blog-3043939165601046582.post-62170583273375852642016-01-05T14:32:00.000-08:002016-01-05T14:32:05.733-08:00Seeking Individuals!<div style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; outline: 0px; padding: 0px; vertical-align: baseline;">
The Midwest HIV Prevention and Pregnancy Planning Initiative is seeking folks who are HIV-positive or negative, of reproductive age, and racially and ethnically diverse to illustrate effective conversations, on film, between medical providers and patients about pregnancy desires. </div>
<div style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; outline: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
<div style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; outline: 0px; padding: 0px; vertical-align: baseline;">
Scenarios will include:</div>
<ul style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; list-style: none; margin: 0px; outline: 0px; padding: 0px 0px 0px 40px; vertical-align: baseline;">
<li style="border: 0px; list-style-type: square; margin: 5px 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Woman living with HIV who expresses ambivalence about having a baby</li>
<li style="border: 0px; list-style-type: square; margin: 5px 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div style="border: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">
Woman living with HIV who wants contraception</div>
</li>
<li style="border: 0px; list-style-type: square; margin: 5px 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div style="border: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">
HIV-negative woman with HIV-positive male partner who don’t want a baby</div>
</li>
<li style="border: 0px; list-style-type: square; margin: 5px 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div style="border: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">
HIV-negative woman with HIV-positive male partner in a safer conception visit </div>
</li>
<li style="border: 0px; list-style-type: square; margin: 5px 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div style="border: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">
Straight man living with HIV being screened in HIV primary care setting for his reproductive desires</div>
<div style="border: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
</li>
</ul>
<div style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; outline: 0px; padding: 0px; vertical-align: baseline;">
Know someone who would be a good for one of these videos? Please email Pamela Tassin at PTassin@aidschicago.org with recommendations or for more information. Volunteers will receive a $50 Amazon gift card as a thank you for their time. Filming will take place on January 21 in Chicago. </div>
<div style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; outline: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
<div style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; outline: 0px; padding: 0px; vertical-align: baseline;">
Thanks!</div>
<div style="border: 0px; font-family: ProximaNova, 'Helvetica Neue', helvetica, arial, sans-serif; font-size: 16px; outline: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com2tag:blogger.com,1999:blog-3043939165601046582.post-71627203643268786682016-01-01T20:18:00.000-08:002016-01-01T20:22:18.638-08:00I think I trust the Science nowWell, 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
<div style="text-align: center;">
<a href="http://1.bp.blogspot.com/-srh-nO-4UjU/VodQW1gEkFI/AAAAAAAAALQ/EGM0JkcNXWY/s1600/snow%2Bday.jpg" imageanchor="1"><img border="0" height="240" src="http://1.bp.blogspot.com/-srh-nO-4UjU/VodQW1gEkFI/AAAAAAAAALQ/EGM0JkcNXWY/s320/snow%2Bday.jpg" width="320" /></a></div>
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com2tag:blogger.com,1999:blog-3043939165601046582.post-73384514953239015512015-10-01T12:38:00.003-07:002015-10-01T12:45:04.590-07:00Lots of ChangesMy 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-LpZFZaoM9M0/Vg2IoWfm4cI/AAAAAAAAAKo/W_GN1eofAcs/s1600/sign.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="492" src="http://2.bp.blogspot.com/-LpZFZaoM9M0/Vg2IoWfm4cI/AAAAAAAAAKo/W_GN1eofAcs/s640/sign.jpg" width="640" /></a></div>
<br />
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.<br />
<br />
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. <br />
<br />
In the meantime, I'll be ovulating next week, so who knows....maybe I'll get pregnant!<br />
<br />
Lots of changes coming our way, I'm grateful for all of you who wish us well, and have been part of this journey.poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com3tag:blogger.com,1999:blog-3043939165601046582.post-60148738413975082642015-06-20T14:28:00.001-07:002015-06-20T14:35:14.537-07:00I hope HIV diesTake a look at this image. If you want a better look, click this <a href="https://upload.wikimedia.org/wikipedia/commons/6/61/HIV_Membrane_fusion_panel.svg" target="_blank">link</a>.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-G64NrZ5C164/VYXPviRQTNI/AAAAAAAAAJ4/OtK8czvTtc8/s1600/images%2B%25281%2529.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="123" src="http://4.bp.blogspot.com/-G64NrZ5C164/VYXPviRQTNI/AAAAAAAAAJ4/OtK8czvTtc8/s640/images%2B%25281%2529.jpeg" width="640" /></a></div>
<br />
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."<br />
<div>
<br /></div>
<div>
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. </div>
<div>
<br /></div>
<div>
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. </div>
<div>
<br /></div>
<div>
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 <a href="http://www.ucdmc.ucdavis.edu/welcome/features/20090701_HIV_spread/" target="_blank">video</a> 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.</div>
<div>
<br /></div>
<div>
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? </div>
<div>
<br /></div>
<div>
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. </div>
<div>
<br /></div>
<div>
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. </div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com2tag:blogger.com,1999:blog-3043939165601046582.post-6713796336456857872015-02-28T12:22:00.000-08:002015-02-28T12:22:08.788-08:00A Human LevelIn 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 <a href="http://hivnegativespouses.blogspot.com/search?updated-min=2009-01-01T00:00:00-08:00&updated-max=2010-01-01T00:00:00-08:00&max-results=9" target="_blank">here</a>.<br />
<br />
With the recent <a href="http://www.thedailybeast.com/articles/2014/09/06/dissed-by-her-doctor-for-wanting-hiv-protection.html" target="_blank">articles</a>, <a href="http://fusion.net/video/35740/truvada-increasingly-used-by-women-to-have-children-with-hiv-positive-partners/" target="_blank">videos</a>, and <a href="http://www.amazon.com/Positively-Negative-Pregnancy-Sciences-Surprising-ebook/dp/B00LUABTAO" target="_blank">book</a> 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?<br />
<br />
I can certainly see the reasoning for her initial refusal to prescribe PrEP for me. <br />
<br />
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 <a href="http://www.aidsmap.com/The-iPrEx-study/page/1746640/" target="_blank">iPrEx study</a> didn't announce its findings until late 2010, and PrEP wasn't approved as an HIV prevention tool by the FDA until 2012.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
And at the very least, it makes us human...and don't we all need a bit more human connection these days?poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com1tag:blogger.com,1999:blog-3043939165601046582.post-20812823346700724192015-02-08T11:54:00.000-08:002015-02-08T11:54:12.196-08:00PrEP 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.<br />
<br />
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."<br />
<br />
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.<br />
<br />
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.<br />
<br />
But, the patients in the waiting room all looked "normal." And I realized...how judgmental of me! What is "normal" anyway?<br />
<br />
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. <br /><br />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...poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com4tag:blogger.com,1999:blog-3043939165601046582.post-14350441653556551662014-10-21T15:16:00.000-07:002014-10-21T20:09:22.686-07:00Security of PrEPWell, 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 <u>practically</u> non-existent, but that's different from <u>entirely</u> non-existent)<br />
<br />
<i>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.</i><br />
<br />
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. <br />
<br />
I realized I need to have the security of PrEP as a safeguard in our efforts to conceive. <br />
<br />
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. <br />
<br />
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.<br />
<br />
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com3tag:blogger.com,1999:blog-3043939165601046582.post-17482051508161876792014-10-05T13:43:00.000-07:002014-10-05T13:43:45.531-07:00To 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...<br />
<div>
<br /></div>
<div>
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?</div>
<div>
<br /></div>
<div>
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 <a href="http://hivnegativespouses.blogspot.com/2014/06/room-to-reactagain-and-again.html" target="_blank">room to react</a> remember?)</div>
<div>
<br /></div>
<div>
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 <a href="http://hivnegativespouses.blogspot.com/2014/08/permission-to-be-female-please.html" target="_blank">here.</a> 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. </div>
<div>
<br /></div>
<div>
If all goes well, I'll be ovulating next week...maybe we'll try without the PrEP...maybe not. </div>
<div>
<br /></div>
<div>
</div>
poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com3tag:blogger.com,1999:blog-3043939165601046582.post-1927604393601274032014-09-17T16:49:00.001-07:002014-09-17T16:52:18.697-07:00Is 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.<br />
<br />
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?<br />
<br />
Its so microscopic and yet so big between us that I feel this sense of wanting to see it, to understand it.<br />
<br />
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.<br />
<br />
<br />
<br />
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-72316234310041987372014-09-13T10:50:00.001-07:002014-09-13T10:50:47.959-07:00Nanny FearsWe 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.<br />
<br />
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! <br /><br />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...<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-idJYsx9x-oQ/VBSChJgZl5I/AAAAAAAAAH8/lJN_8r4mUfc/s1600/meds2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-idJYsx9x-oQ/VBSChJgZl5I/AAAAAAAAAH8/lJN_8r4mUfc/s1600/meds2.jpg" height="400" width="377" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
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. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
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!</div>
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-63099186646903449732014-09-09T12:21:00.003-07:002014-09-09T22:54:50.872-07:00All-American Truvada FamilyMy 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?<br />
<br />
I don't know. I keep going back and forth between Me on Truvada, and Me Without Truvada.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
Me Without Truvada. Condom use is much safer for me in terms of medical side effects and additional toxins in my system.<br />
<br />
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.<br />
<br />
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!<br />
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com3tag:blogger.com,1999:blog-3043939165601046582.post-15459368023217979842014-09-01T11:19:00.001-07:002014-09-01T20:25:22.110-07:00What's Most ImportantAfter 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.<br />
<br />
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 (<a href="http://www.amazon.com/Positively-Negative-Pregnancy-Sciences-Surprising-ebook/dp/B00LUABTAO" target="_blank">Positively Negative</a>...Read it!)<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-34035514362482348502014-08-30T10:54:00.001-07:002014-08-30T15:25:58.012-07:00Time to HealFlashback 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
I've been reading and re-reading the book <a href="http://www.amazon.com/Positively-Negative-Pregnancy-Sciences-Surprising-ebook/dp/B00LUABTAO" target="_blank">Positively Negative</a> 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.<br />
<br />
It is finally over. <br />
<br />
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.<br />
<br />
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. <br />
<br />
Time to close my eyes, smell my daughter's sweet sticky cheeks, smile....and heal. <br />
<br />poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com2tag:blogger.com,1999:blog-3043939165601046582.post-6103690284000858072014-08-16T12:41:00.001-07:002014-09-09T11:14:49.386-07:00"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....<br />
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.<br />
<br />
Well you know what...I changed my mind. It <b><u>IS</u></b> a feminist issue. And the more I think about it, the more angry and offended I become.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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?<br />
<br />
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?<br />
<br />
Ugh. I could go on about this, but you get the picture right? <br />
<br />
I am not a human-sized uterus. I am a human sized HUMAN.
<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- Not sure what this is -->
<br />
<ins class="adsbygoogle" data-ad-client="ca-pub-5540090227361561" data-ad-slot="9356354206" style="display: inline-block; height: 90px; width: 728px;"></ins><script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com3tag:blogger.com,1999:blog-3043939165601046582.post-87012071981537636762014-08-10T17:50:00.000-07:002014-08-21T22:30:48.431-07:00The Story of HerWhen 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.<br />
<br />
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, <a href="http://www.amazon.com/Positively-Negative-Pregnancy-Sciences-Surprising-ebook/dp/B00LUABTAO" target="_blank">Positively Negative</a> 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!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-s9maYJIa2xA/U-gMM27EW_I/AAAAAAAAACo/kmFL2EHphrY/s1600/closed+box.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-s9maYJIa2xA/U-gMM27EW_I/AAAAAAAAACo/kmFL2EHphrY/s1600/closed+box.jpg" height="282" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
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. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-uCIOhPAMopU/U-gMkCA9IsI/AAAAAAAAACw/OP-m7PwA54w/s1600/up+close.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-uCIOhPAMopU/U-gMkCA9IsI/AAAAAAAAACw/OP-m7PwA54w/s1600/up+close.jpg" height="320" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
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. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-TGnxvSBS2-8/U-gRjnr5_JI/AAAAAAAAADA/IfHqXJy0LrE/s1600/open+box.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-TGnxvSBS2-8/U-gRjnr5_JI/AAAAAAAAADA/IfHqXJy0LrE/s1600/open+box.jpg" height="320" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
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!</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
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. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-_Ju3FsfarAI/U-gSaeccrjI/AAAAAAAAADI/yQBDkh6FCIE/s1600/macey+grabber.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-_Ju3FsfarAI/U-gSaeccrjI/AAAAAAAAADI/yQBDkh6FCIE/s1600/macey+grabber.jpg" height="320" width="240" /></a></div>
<ins class="adsbygoogle" data-ad-client="ca-pub-5540090227361561" data-ad-slot="9356354206" style="display: inline-block; height: 90px; width: 728px;"></ins><script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-54755961216411960032014-08-06T10:07:00.000-07:002014-08-23T11:26:57.425-07:00Pictures of Us<script>
(function(i,s,o,g,r,a,m){i['GoogleAnalyticsObject']=r;i[r]=i[r]||function(){
(i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o),
m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m)
})(window,document,'script','//www.google-analytics.com/analytics.js','ga');
ga('create', 'UA-53607926-1', 'auto');
ga('send', 'pageview');
</script><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-GFY5zHCRx84/U-JeyybxAGI/AAAAAAAAACE/v2abWJGI2S4/s1600/IMG-20130305-00425.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-GFY5zHCRx84/U-JeyybxAGI/AAAAAAAAACE/v2abWJGI2S4/s1600/IMG-20130305-00425.jpg" height="200" width="161" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">9 months pregnant!</td></tr>
</tbody></table>
<span style="font-size: large;">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. </span><br />
<span style="font-size: large;">Hope you enjoy!</span>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="http://3.bp.blogspot.com/-_AVkMyucPxc/U-Je1QvPtZI/AAAAAAAAACM/q9_LT6T7Uo8/s1600/DG+first+glimpse+2+-+Version+2.jpg" height="261" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first glimpse!</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-WtpRSc4Lptc/U-JdXRDb9eI/AAAAAAAAAB4/ZQGNb-Xg7ZY/s1600/MaceyNewborn_047.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-WtpRSc4Lptc/U-JdXRDb9eI/AAAAAAAAAB4/ZQGNb-Xg7ZY/s1600/MaceyNewborn_047.jpg" height="400" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family Photo...she is 13 days old here!<br />
</td></tr>
</tbody></table>
poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-71469778753224687532014-07-26T12:16:00.000-07:002014-08-23T11:45:18.483-07:00Minus the StigmaLately, I've been thinking a lot about the stigma of HIV. Specifically, my battle with it. I really admire people who are open with their status, to me it appears so effortless how they own their truth. I wonder if the more confidence a person has about a decision they've made (HIV related or otherwise), the less room there is for shame and stigma. I experienced this kind of confidence when we decided to be honest with people about how we got pregnant. I was so proud and so ferociously protective of the life growing in me, that it didn't matter what anyone thought about our decisions. And I feel that same way even today...I really don't care what people think about the decisions and risks we took to conceive. You'd be amazed at the sort of emails I get from this blog...people who are really upset with my decisions, people who tell me I was/still am careless, reckless, selfish, sinful, etc. It doesn't phase me because before this life was my reality, I would have thought the same thing.<script>
(function(i,s,o,g,r,a,m){i['GoogleAnalyticsObject']=r;i[r]=i[r]||function(){
(i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o),
m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m)
})(window,document,'script','//www.google-analytics.com/analytics.js','ga');
ga('create', 'UA-53607926-1', 'auto');
ga('send', 'pageview');
</script><br />
Its not really courageous or brave of me to be "thick skinned" with the awful emails I get. Anyone can be brave when they're anonymous. But ever since Heather Boerner's book <a href="http://www.amazon.com/Positively-Negative-Pregnancy-Sciences-Surprising-ebook/dp/B00LUABTAO/ref=sr_1_1?ie=UTF8&qid=1405713200&sr=8-1&keywords=positively+negative" target="_blank">Positively Negative</a> was released, I've been wrestling with this issue of stigma. And its been good. To be honest, for the past decade or so, in my pursuit of conception, I have not thought about this critical issue. Now that I have a child, and since there are so many women and families in this same position, I just can't take the luxury of pushing it off anymore.<br />
<br />
So...not sure where to really start making sense of it. Probably should see a therapist about it. Probably should talk to my husband about it. Funny how its so simple...and so complicated.<br />
<br />
From the very first post on this blog, I have found the process of sharing my struggles with you to be helpful to my own journey. Just to get my thoughts out there has been liberating and refreshing. I know that my perspective is not always politically correct, or medically correct, but I know that I am always striving for a deeper understanding of all things HIV, especially as it relates to my own life.<br />
<br />
So...about that stigma...whats at the root of it? I know the root is Shame for my husband...but is it Shame for me too? Probably. Shame with a little fear of the assumptions others will have about my husband and I. Shame with a little fear of rejection that comes from people's ignorance and judgement.<br />
<br />
Guess it all boils down to Shame with a little bit of fear what others will think of me. (But really...who doesn't fear what others will think of them?) And what would it look like for me to let go of this HIV stigma? Maybe it would mean you'd know my real name, and know what I look like. Maybe it would mean nothing would be different...<br />
<br />
I hope I figure this out. I don't want to be battling with this when my daughter comes to an age of understanding prejudice and intolerance. I want her to know her parents as people who took charge of their own life's narrative, instead of others narrating for them. <br />
<br />
I want her to live the truth, her family's truth, her own truth...minus the stigma.<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- Not sure what this is -->
<br />
<ins class="adsbygoogle" data-ad-client="ca-pub-5540090227361561" data-ad-slot="9356354206" style="display: inline-block; height: 90px; width: 728px;"></ins><script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-510442649014297342014-07-18T12:56:00.000-07:002014-08-23T11:31:20.148-07:00Positively Negative...READ IT!I am so excited to announce and introduce you to an amazing new book, just released today! It is called <i><b><a href="http://www.amazon.com/Positively-Negative-Pregnancy-Sciences-Surprising-ebook/dp/B00LUABTAO/ref=sr_1_1?ie=UTF8&qid=1405713200&sr=8-1&keywords=positively+negative" target="_blank"><span style="color: blue;">Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV</span></a><span id="goog_290169228"></span><span id="goog_290169229"></span><a href="https://www.blogger.com/"></a></b></i>.<br />
<script>
(function(i,s,o,g,r,a,m){i['GoogleAnalyticsObject']=r;i[r]=i[r]||function(){
(i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o),
m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m)
})(window,document,'script','//www.google-analytics.com/analytics.js','ga');
ga('create', 'UA-53607926-1', 'auto');
ga('send', 'pageview');
</script><br />
Heather Boerner, the book's author contacted me way back when, to ask if we'd be willing to tell her our story...how we met, fell in love, journey to conception, pregnancy, and finally a baby. It was the first time I had told the story to anyone from start to finish. It brought up many memories and emotions, but mostly it brought up a deep sense of satisfaction. Satisfaction that I believed in this love, believed in the hope for a baby of our own, and believed in people like Heather-who continued the fight when I could not and carried the message when my strength wavered. <br />
<br />
As I read the book today, I re-lived the journey...this time with my darling baby girl toddling around, finding entertainment with a cardboard box and her favorite doll in the red dress...<br />
<br />
And when she pressed her baby soft and honey sweet cheek to mine, and looked into my eyes with her long eyelashes fluttering so...I wept. I wept because Heather captured the emotions of the journey so beautifully in her book, and so graciously described our little Pom-Pom, and so eloquently intertwined human emotions and storytelling with medical facts and scientific jargon.<br />
<br />
I feared admitting to you all that we're one of the couples featured in the book because some of the details take away from my anonymous-ness...but I feel okay about that. I'm grateful that Heather allowed us to tell our story anonymously. Its a real sacrifice to the integrity of a story when three of the main characters are faceless and nameless, but she never pushed and never judged. And...I find strength in that. Strength to let you all in a little bit more.<br />
<br />
To keep this conversation going join the Twitter Chat Book Launch Party on July 19th at 1:30 PST. I'll be tweeting along with you all...just follow #HIVLoveWins.<br />
<br />
Also, next weekend on CNN, Sanjay Gupta features the Hartmanns, the other couple in the book! Will let you know more details as I get them.<br />
<br />
<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- Not sure what this is -->
<br />
<ins class="adsbygoogle" data-ad-client="ca-pub-5540090227361561" data-ad-slot="9356354206" style="display: inline-block; height: 90px; width: 728px;"></ins><script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-5102324991460289772014-06-22T11:45:00.002-07:002014-08-23T11:48:37.222-07:00Room to React...again and again<script async src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- Not sure what this is -->
<ins class="adsbygoogle"
style="display:inline-block;width:728px;height:90px"
data-ad-client="ca-pub-5540090227361561"
data-ad-slot="9356354206"></ins>
<script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>
<br />
If you've read through this blog, you'll notice I say something over and over....you have to allow people room to react. I learned this after my husband and I told my family about his HIV status when essentially a bomb went off in our entire family that didn't heal until my daughter was born.</span><div>
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">I came across this quote today from author Pema Chodron (from her book When Things Fall Apart), "We think that the point is to pass the test or overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together again and fall apart again. Its just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy"</span></div>
<div>
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">A few weeks ago, my husband and I took our daughter for a visit to see my parents. We have all come a long way from the days when they wouldn't speak to me because of my choice to marry my husband. Both my parents have come a long way in letting go of their fears and expectations, and have truly come to accept and love my husband as part of the family. I have been very happy with their progress, and thought they had really come around. My best friend from high school just had a baby, so my husband and I were going to visit the newest little bundle. And then my dad made a remarkably offensive comment. He said "Do you think your friend will feel comfortable having your husband hold her new baby?" I was completely taken aback...and said "Yes dad, she's fine with it, she invited us both over to see the baby." My father replied "But maybe she's not comfortable saying that he shouldn't hold the baby...you know....just in case the baby could catch it." </span></div>
<div>
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">I was stunned. I was frustrated, I was angry. Here I thought they made all this progress with their fears and ignorance, and then all at once, we take 5 years worth of steps back. I replied, "Haven't you learned by now that you can't 'catch' HIV like that? Why don't you educate yourself before making such an ignorant comment?"</span></div>
<div>
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">My heart broke all over again and honestly, I felt like packing all our stuff and storming out of their home for another 5 years, and vowing to never let them see my daughter again unless they were ready to fully accept our circumstance and stop being so ignorant. </span></div>
<div>
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">It took a couple hours but I cooled off. I had to remind myself..."give him room to react, give yourself room to react, remember we all need room to react." Eventually I let it go. It allowed me to understand exactly what Perma Chodron means when she writes:</span></div>
<div>
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">"...the truth is that things don't really get solved. They come together and they fall apart. Then they come together again and fall apart again...the healing comes from letting there be room for all this to happen...."</span></div>
<div>
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">This has been my life's greatest lesson. I hope you will allow room in your life for this lesson as well. </span></div><script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- Not sure what this is -->
<br />
<ins class="adsbygoogle" data-ad-client="ca-pub-5540090227361561" data-ad-slot="9356354206" style="display: inline-block; height: 90px; width: 728px;"></ins><script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com0tag:blogger.com,1999:blog-3043939165601046582.post-41140792828834798262014-06-21T11:25:00.001-07:002014-08-23T11:49:20.807-07:00Still Processing<span style="font-size: large;">A while back, I spoke with a person who was writing a story about our journey to conceive. She asked about the medication I was taking, Truvada, and in talking with her I realized that I had not processed the fact that I was taking an HIV medication during our attempts to conceive. When I first heard about the possibility of taking Truvada as a way to reduce the risk of transmission of HIV during unprotected planned intercourse, I asked my primary doctor to prescribe it to me. My doctor not only refused to prescribe the medication, saying it would be unethical for her to do so, but she also told me she'd refuse to see me as a patient if I was going to engage in such risky behavior.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Needless to say, I found another doctor who was willing to prescribe me Truvada. The only thing was this new doctor was a doctor at the HIV clinic where my husband was a patient. It was an unconventional approach...but I was willing to do whatever it took to conceive a child. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">So...now to the "processing" part. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I'll be honest here...it was not a comfortable feeling for me to go to an HIV clinic for my primary health care needs. It was like trying to fit a square peg into a round hole. The advantage was the doctors at this clinic were very mindful and supportive of our desire to reduce risk of transmission, but since they were specialists in treating HIV patients, I didn't get the comprehensive health care that I really needed. But it was the only place I could be prescribed Truvada within my insurance network so there I was... monthly visits and blood tests at an HIV clinic. It made me face my own prejudice and notions about HIV. I felt ashamed. I felt humiliated. I realized that everyone in this clinic, thought I was HIV+. The receptionist, the patients in the waiting room, the medical assistants, the nurses, the custodial staff, the lab workers....I felt angry that in this modern age of medicine, this was how it had to be done. But the real reason for my anger was my shame. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I thought I had processed it all...thought I had come to accept my husband was HIV+, but it became clear that I had not. I finally understood why my husband battles so much with shame, and social anxiety, and self-hatred. It is because he lives in a world where having HIV is still judged, still shamed, and still feared. And...he joins his voice to the rest of those that spew judgement and hatred...in fact, his voice may be the loudest of all. And I am ashamed to admit, and still processing how to rid myself of the judgement and fear that I thought I had overcome. I know now that it is different when you are a patient. It is different when you are the one living with HIV. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I also know that I rose above my own shame, and I faced what I thought was judgement from others...because I knew it was temporary. I knew I was not HIV+, and once I became pregnant I would not have to go back to the clinic. While it took resolve for me to check in and sit in the waiting room of an HIV clinic, it was not brave or courageous. No, the brave and courageous ones are those who live life every day with HIV...who boldly face shame, and fear, and rejection each day.</span><script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- Not sure what this is -->
<br />
<ins class="adsbygoogle" data-ad-client="ca-pub-5540090227361561" data-ad-slot="9356354206" style="display: inline-block; height: 90px; width: 728px;"></ins><script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com1tag:blogger.com,1999:blog-3043939165601046582.post-68834655131178069132014-02-09T11:38:00.003-08:002014-08-17T12:22:13.220-07:00Lavishing Love<script async src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- number one -->
<ins class="adsbygoogle"
style="display:inline-block;width:728px;height:90px"
data-ad-client="ca-pub-5540090227361561"
data-ad-slot="1451311000"></ins>
<script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>My own family has long struggled with accepting my husband's HIV status. When we first announced we were getting married, there was a huge blow-up...nasty words were spoken, bitter tears were shed, and many years without contact were spent. None of my family members attended our wedding. I came to understand very quickly, as I've said in this blog before, that you have to allow people room to react. And you have to let go of your own expectations of how people should react or behave when you make the decision to disclose something personal. This realization saved me from staying bitter and resentful toward my family. I understood they were reacting from a place of fear and lack of knowledge.
<script>
(function(i,s,o,g,r,a,m){i['GoogleAnalyticsObject']=r;i[r]=i[r]||function(){
(i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o),
m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m)
})(window,document,'script','//www.google-analytics.com/analytics.js','ga');
ga('create', 'UA-53607926-1', 'auto');
ga('send', 'pageview');
</script><br />
<br />
I spent many years pursuing them...rebuilding our relationships. We could not engage in healthy discussions, so for 5 years, we stopped speaking. It was a good decision on all our parts...giving each other room. (We lived 2,000 miles apart so that helped us give each other room too) I mailed cards on holidays and mailed gifts on birthdays. And after a couple years, I'd leave voicemails on holidays and birthdays...they never picked up when I called. Once we hit our 5 year anniversary, they suddenly understood that my relationship with my husband was not- negotiable. They realized they could not control my choices and decisions. My sister came for a short visit from out of town. Then we flew to them for Christmas...and slowly but surely, we began rebuilding our family dynamics. We would never be the same, none of us. We spent the 5 years apart, and now - suddenly - we were back to being a family, but we were all different people.<br />
<br />
Through all those years, everyone would tell me, "Wait until you have children. They will come around." And they certainly have come around. Big Time. <br />
<br />
It is amazing what this new child has done for our family. With her chubby cheeks, and wispy hair, she has rebuilt us all. She has brought us to a place far better than any of us could have dreamed of or imagined...our family unit has been made whole. They lavish their love upon her, and upon us too. And it feels like we never missed out on those 5 years. Don't know which is the greater miracle, her birth or our family's healing.<script async src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script>
<!-- number one -->
<ins class="adsbygoogle"
style="display:inline-block;width:728px;height:90px"
data-ad-client="ca-pub-5540090227361561"
data-ad-slot="1451311000"></ins>
<script>
(adsbygoogle = window.adsbygoogle || []).push({});
</script>poprockhttp://www.blogger.com/profile/18328658857607368607noreply@blogger.com4