A Harrowing Journey.

I was diagnosed on Inauguration Day, 2009. Over the phone (classy, I know). My world fell apart... I was pregnant. I was, obviously, in disbelief and shock and refused to even think the tests were correct. I've been married since August of 2006, and we have been monogamous. This was a huge blow, I didn't even know who to talk to. I called my husband at his work, and I left work to come home and wait for him. We went in for my follow-up blood tests and scheduled him for one as well.

Long story short, we both have HIV. While we'll never know for sure, we think he had it first and are not sure how he got it. His counts have been terrible until just recently, and mine have never been that bad. At this point in time I am not taking any medications, and my last count was undetectable with a CD4 of almost 800.

The only good thing out of this has been our daughter, the absolute light of our lives. She is 100% negative. She's rarely sick (gets that from me, heh) and smart and active and just completely amazing.

We've told a small group of people about our diagnoses: my mom, his parents, our closest friends. We made the decision to keep it quiet from everyone else because the level of education about HIV is not really that great here. People still think you can get it from touching, kissing, drinking after each other. I've been well-educated about it for a long time, much longer than I've had the diagnosis.

My husband was sick a lot as they tried to find drugs that would work for him. Atripla affected both of us (mine was fatigue and insane dreams). He's finally on a two-pill combo that seems to be doing more good than ever - and he's finally gotten undetectable.

I cry a lot about this. It's hard not to think that my life as I knew it was over. I worry about dying young, or worse - my husband dying (he's 42, I'm 29) and leaving my daughter and I behind. This little family is my everything and I don't know how I could cope with losing him, but after he got so sick with pneumonia and other opportunistic infections at the end of last year/beginning of this year, it was a real possibility and it scared the hell out of me.

I try not to think about it most days. Actually, I don't have time to think at all anymore, chasing after a 14 month old daughter. But sometimes when I'm alone I can't help it. I guess what I feel is normal, but I wouldn't know. I'm not the type to sit in a circle and talk about feelings. Writing it out is easier for me, and right now it's pretty hard. With time I'll probably be able to say more.
MissouriMama MissouriMama
26-30
2 Responses Aug 6, 2010

Hi there. I read your story and actually felt good after it. I was diagnosed in Feb. 2009. I am still not on any medication. I think that's short lived and I may have to start soon. I am holding off until my CD4 count is below 500. I too have a daughter, much older then yours, she is in college now. I did not tell her until about six months ago. She had an idea only because she found some papers in my closet when you she was in there looking for something. She questioned my sisters several times but they knew that I did not want her to know yet, so they said if your mother was not well and is not telling you, it's because she's trying to protect you. I did not want to upset her during the most important time in her life. Graduating high school, transitioning to college, and considering going into medicine. Now that she knows she has come across so many situations that have exposed her to what's going on with the progress of hiv/aids. She has interviewed several professors and scientists (she's a journalism/biology major) and learned so many interesting things that are being done to help with hiv.<br />
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It sounds like you have a wonderful family and support group right there at home. It's not the end for us but it is difficult to accept. I hope everything works out for you and your husband, and truly hope that something great will happen soon with finding cure for this disease.<br />
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If you ever need someone to talk to, I'm here. Keep in touch, would love to hear back from you.

Oh my. Oh dear. I am so sorry. I am so sorry MissouriMama. My thoughts go with you. Across the water, right now - I send you my love, my hope, my best wishes for you and yours. To be so blessed and so pained. Oh dear. Oh dear. I am so sorry. <br />
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What more can I say? What a shock for you. What a lot to deal with. <br />
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You say, "I'm not the type to sit in a circle and talk about feelings. Writing it out is easier for me, and right now it's pretty hard. With time I'll probably be able to say more." So write. We don't know who you are. We don't know where you live, what you look like. We don't know what we'll say back, if anything. None of that matters, there is healing to be had in just saying it as it is. Telling your truth. Sharing your story. Being who you are, no matter what.<br />
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It's okay you know. To just say whatever you need to say. To us. To me. The strangers out there, sharing this common ground. This need to be with someone else when "it" (whatever your individual "it" is) catches you unawares? It's okay.<br />
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I realise in your busy, busy life you barely have room to breathe right now. But clearly you need to make room for some "me" time. If not here, then elsewhere. Tell it to the trees. To the shadows. To the crack in the bathroom wall. Just five minutes. Now and again. <br />
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Only you are walking exactly this path, in this way, at this time. And whilst we all have our pains, our losses, our woes... no-one can hear you as well as you can hear yourself (excepting, perhaps, whatever G-d or greater life force you believe in). So remember to take the time to be *with* yourself right now. Taking care of *you*. Being kind to *you*. Giving *you* the space you need to make some kind of peace with this situation. <br />
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Not that you shouldn't want more or hope for better. Just that embracing where you are and what you are going through is really the only sensible thing to do, isn't it? I mean, its not like resisting it will change it... So take some time to sit with it, breathe with it. And when you find yourself crying, be in love with that wounded self who wished for so much more. <br />
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Take the time to take care of yourself so that you can also love your husband and your daughter all the more, and be there for them all the more. Take the time to truly feel the blessings of your life by taking the time to truly feel the pains. In my experience they go hand in hand. Only when you step deeply into the wanting, the waiting, the wishing, the horror of "what if's", can you find the bright pearl at the centre of your life that will let you see what you *do" have more clearly.<br />
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That's all there is really, from me to you. Some words reaching out. Willing you to be real with yourself, even if you can't be all real with everyone around you. <br />
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And some love. From me, to you. Strangers. But believe me, if I could send some cosmic force across the oceans right now, some force that would hold you like the best me holds a crying baby... if I could send that, it would take you and hug you and say all the other things you wish to hear, all the right things, all the needed things, all the wanted things, in that language that goes beyond words. <br />
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No platitudes, no attempts at describing an indescribable ache in my heart that is just for you, no clunky vocabulary that is a too-poor-fit for the wish to console, no hesitations whilst I remember how to type, just us. Two women. With our different lives and different journeys. And one fit-for-purpose hug. <br />
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All the best MissouriMama, may you and yours live long and happy, E.