I'd like to ask for your thoughts on side effects from medication used to treat HIV. I hear that some side effects can be very difficult to handle and I want to hear of your experiences or thoughts on the subject.
My husband is on Viramune and Combivir. His side effects include headaches, constipation, and psoriasis.
I feel fortunate that he doesn't suffer from any intense effects but I know there are others out there who deal with major side effect issues.
Please post in the comment section.
Monday, March 30, 2009
Sunday, March 1, 2009
Mistress HIV and I
Viramune, Combivir, viral load, T-cell count, antiviral therapy, protease inhibitors, undetectable....just a few of the words spoken on an early date with my husband.
Doctor, post-exposure prophylaxis, family, pregnant, friends, wedding, future...these words spoken a few months later.
Work, CD4 percentage, lunch, Walgreens, pets, side effects, bills...all words spoken on any given day now.
You'd think my husband and I would talk about his HIV in an in-depth and serious manner, but truth be told, we rarely speak of it. "HIV" is a curse word in our home. If it is uttered, it is accompanied by an inconspicuous full-body cringe. And yet, its always there...like a veiled ghost dancing in our midst.
My husband and I have our individual relationship with his HIV, but its not a threesome. I once heard my husband refer to his HIV as "the HIV monster." I imagine his relationship with HIV is hostile and forced and earnest at the same time. My relationship with HIV has evolved over time...
In the beginning, the HIV was frightening, stifling, and unrelenting. I read everything I could get my hands on about it, but I seemed to always come up with books or articles on "care taking", "health advocating", and "supporting." It was suffocating. The only breath of air came when talking to my husband's doctor. She was my lifeline...so calm and matter of fact about it. She could actually smile and say "HIV" in the same sentence! Could there be a different perspective????
Later, his HIV became the Harley-Riding Bad Boy I obsessed over. I was understanding the disease, the treatments, medical terms, and flurry of information. I could handle disclosure to close friends and family, I could plan a future with him. At last, the highly anticipated exhale. I was breathing on my own, without the doctor. We got married and life with Mistress HIV began.
For the next five or so years, the HIV was a concealed third party in our relationship. I became angry and indifferent. I stopped searching for information, and stopped disclosing to people. I knew she (HIV) was there, just didn't want to deal with her. I became frustrated with my husband for being apathetic. Didn't he know I was dealing with her too?
She became my enemy. She knew the intimate thoughts and fears he wouldn't share with me. She affected his body in ways that I couldn't. She could "out" him if he didn't attend to her. She was IN him and ON him...all the time, everywhere...constant, adamant, incessant.
She keeps him a minuscule latex condom distance away from me.
Slowly, this relationship is changing. Her and I have a new found respect for each other. She's not going anywhere, and I'm not either. We're trying to figure out how this is going to work (a difficult task when you don't talk about it). I use this blog as a way to "out" her, and I'm back to researching and learning. It will be a toilsome and tangled relationship, but as Mistress HIV and I navigate this obligation, there is one thing I am assured of.
She has his body, but I have his heart...and that's one thing she'll never get her hands on.
Doctor, post-exposure prophylaxis, family, pregnant, friends, wedding, future...these words spoken a few months later.
Work, CD4 percentage, lunch, Walgreens, pets, side effects, bills...all words spoken on any given day now.
You'd think my husband and I would talk about his HIV in an in-depth and serious manner, but truth be told, we rarely speak of it. "HIV" is a curse word in our home. If it is uttered, it is accompanied by an inconspicuous full-body cringe. And yet, its always there...like a veiled ghost dancing in our midst.
My husband and I have our individual relationship with his HIV, but its not a threesome. I once heard my husband refer to his HIV as "the HIV monster." I imagine his relationship with HIV is hostile and forced and earnest at the same time. My relationship with HIV has evolved over time...
In the beginning, the HIV was frightening, stifling, and unrelenting. I read everything I could get my hands on about it, but I seemed to always come up with books or articles on "care taking", "health advocating", and "supporting." It was suffocating. The only breath of air came when talking to my husband's doctor. She was my lifeline...so calm and matter of fact about it. She could actually smile and say "HIV" in the same sentence! Could there be a different perspective????
Later, his HIV became the Harley-Riding Bad Boy I obsessed over. I was understanding the disease, the treatments, medical terms, and flurry of information. I could handle disclosure to close friends and family, I could plan a future with him. At last, the highly anticipated exhale. I was breathing on my own, without the doctor. We got married and life with Mistress HIV began.
For the next five or so years, the HIV was a concealed third party in our relationship. I became angry and indifferent. I stopped searching for information, and stopped disclosing to people. I knew she (HIV) was there, just didn't want to deal with her. I became frustrated with my husband for being apathetic. Didn't he know I was dealing with her too?
She became my enemy. She knew the intimate thoughts and fears he wouldn't share with me. She affected his body in ways that I couldn't. She could "out" him if he didn't attend to her. She was IN him and ON him...all the time, everywhere...constant, adamant, incessant.
She keeps him a minuscule latex condom distance away from me.
Slowly, this relationship is changing. Her and I have a new found respect for each other. She's not going anywhere, and I'm not either. We're trying to figure out how this is going to work (a difficult task when you don't talk about it). I use this blog as a way to "out" her, and I'm back to researching and learning. It will be a toilsome and tangled relationship, but as Mistress HIV and I navigate this obligation, there is one thing I am assured of.
She has his body, but I have his heart...and that's one thing she'll never get her hands on.
Monday, February 2, 2009
Anger
I'm the type of person that is good at encouraging people to reach their highest potential. I am angered by the injustice in the world, and have found a way to make a living advocating for social justice. I've spent the past ten years helping under-served people achieve the quality of life they deserve, and my motivation has always been Anger.
For me, Anger is a catalyst. It is a springboard to change, and without it, I couldn't do what I do each day. I take on people's causes. I fight the fights they cannot, and in the process, teach individuals to know their rights and act on them. It has always puzzled me why it seems I get more Angry about the issues facing these individuals than they themselves do. I've often looked into their sad sullen eyes wondering if they really want my help, and if they do why aren't they Angry too?
Anger is an incredible motivator. I hear amazing stories of women who created the change they wanted to see because they were first angry. Lilly Ledbetter fighting for equal pay. Rosa Parks fighting for human equality. Erin Brockovich fighting for truth and justice.
My Anger has gotten me in trouble a few times, but overall, its been a good indicator that there is a fight to be fought. I've been trying to find a way to get pregnant. Given that my husband is HIV+, that is a challenge. It is a challenge that has made me very Angry. I've been Angry about this for almost 8 years now. I've gathered information, talked to medical experts, researched, and spent a lot of time being Angry.
A couple weeks ago, my husband and I were told by my doctor that he cannot perform a medical procedure, sperm washing and inter-uterine insemination, to help us achieve pregnancy. My insurance company has not developed a protocol for this procedure, and fear that my risk of infection is too high for them to justify allowing me to have this procedure. And, even if my doctor could do the procedure, the likelihood that I would get pregnant is extremely slim because the washed sperm would not be healthy enough to achieve pregnancy after "all the processing." (for more info on this procedure, click here.) After spending an hour in his office, trying to hold back tears, (unsuccessfully I might add) I asked the doctor what can be done to convince the "insurance gods" to perform this procedure.
He told me to write a letter to the Member Services department. He told me if I don't get a response from them about the letter, to call Member Services. He told me to be polite, don't raise my voice, don't get "crazy", and just wait patiently because it will take a long time for the insurance gods to change their minds.
As I drove away from this visit with my doctor, I cried. I cried because I had gotten my hopes up. I cried because I was frustrated. I cried because we are so close. I cried because it seems we're not any closer than we were 8 years ago. And I cried because I was sad. When my husband asked me "What are we going to do next" I just cried.
And you know what? Today, I'm not Angry. I'm too exhausted to be Angry. I'm too sad to be Angry. I'm too hopeless to be Angry.
And now, I finally understand what is behind those sad sullen eyes when I offer my Anger to help them fight. It is a jumbled mixture of emotion. It is fear, grief, exhaustion, disappointment, irritation, rage, aggression, and disgust. And it is Anger too.
A different type of Anger. A mature Anger. A wise Anger. It understands that somewhere, somehow, someone is Angry enough to take the action that you cannot. And it understands that feeling sad is powerful too.
For me, Anger is a catalyst. It is a springboard to change, and without it, I couldn't do what I do each day. I take on people's causes. I fight the fights they cannot, and in the process, teach individuals to know their rights and act on them. It has always puzzled me why it seems I get more Angry about the issues facing these individuals than they themselves do. I've often looked into their sad sullen eyes wondering if they really want my help, and if they do why aren't they Angry too?
Anger is an incredible motivator. I hear amazing stories of women who created the change they wanted to see because they were first angry. Lilly Ledbetter fighting for equal pay. Rosa Parks fighting for human equality. Erin Brockovich fighting for truth and justice.
My Anger has gotten me in trouble a few times, but overall, its been a good indicator that there is a fight to be fought. I've been trying to find a way to get pregnant. Given that my husband is HIV+, that is a challenge. It is a challenge that has made me very Angry. I've been Angry about this for almost 8 years now. I've gathered information, talked to medical experts, researched, and spent a lot of time being Angry.
A couple weeks ago, my husband and I were told by my doctor that he cannot perform a medical procedure, sperm washing and inter-uterine insemination, to help us achieve pregnancy. My insurance company has not developed a protocol for this procedure, and fear that my risk of infection is too high for them to justify allowing me to have this procedure. And, even if my doctor could do the procedure, the likelihood that I would get pregnant is extremely slim because the washed sperm would not be healthy enough to achieve pregnancy after "all the processing." (for more info on this procedure, click here.) After spending an hour in his office, trying to hold back tears, (unsuccessfully I might add) I asked the doctor what can be done to convince the "insurance gods" to perform this procedure.
He told me to write a letter to the Member Services department. He told me if I don't get a response from them about the letter, to call Member Services. He told me to be polite, don't raise my voice, don't get "crazy", and just wait patiently because it will take a long time for the insurance gods to change their minds.
As I drove away from this visit with my doctor, I cried. I cried because I had gotten my hopes up. I cried because I was frustrated. I cried because we are so close. I cried because it seems we're not any closer than we were 8 years ago. And I cried because I was sad. When my husband asked me "What are we going to do next" I just cried.
And you know what? Today, I'm not Angry. I'm too exhausted to be Angry. I'm too sad to be Angry. I'm too hopeless to be Angry.
And now, I finally understand what is behind those sad sullen eyes when I offer my Anger to help them fight. It is a jumbled mixture of emotion. It is fear, grief, exhaustion, disappointment, irritation, rage, aggression, and disgust. And it is Anger too.
A different type of Anger. A mature Anger. A wise Anger. It understands that somewhere, somehow, someone is Angry enough to take the action that you cannot. And it understands that feeling sad is powerful too.
Sunday, January 4, 2009
Disclosure is a commitment
When I was a teenager, a young woman befriended me at my church. She was fun, trustworthy, patient, wise, and supportive. She guided me through a difficult relationship with my parents by being both the "mother" and "father" I needed in those years. She offered advice, comfort, and friendship. She was my mentor, and I wanted to be just like her.
When I went away to college, she continued mentoring me through phone calls and letters, never too busy for me. She listened intently when I told her about college life....the professors and difficult classes, the boyfriends, and the woes of living with a roommate. She always listened and used these experiences to mentor me and teach me about life's lessons.
Eventually, she got married. They bought a house in the suburbs with a huge backyard, and had a baby. I was the baby's nanny over the summers and Holiday breaks from school. I spent those carefree days imagining my own future husband and family, desperately wanting the dream of happily ever after.
Once I graduated, my career took me thousands of miles away from my parents, but also, thousands of miles away from her.
Fast forward three years to the point where I decide to marry my husband. I knew he was HIV+ when I married him. I had done the research, I knew what I "was getting into." Telling my parents about his HIV status was difficult. (that's a whole other post!)
But telling her... was devastating. I can't remember her exact words, but I remember feeling hurt and betrayed by her reaction. And I remember understanding that if I married him, I would no longer be welcome in her home or near her children. She was certain that I would become infected, and she didn't want to risk me passing HIV to her children.
And with that, our friendship ended and my mentor was lost.
I learned the hard way that disclosure is a commitment. You have to be committed to giving people room to react to what you tell them. HIV is a scary thing for people to accept, and when they find it has "hit close to home," their fear and lack of education may cause them to push you away.
After processing her reaction, I realized her rejection had nothing to do with me. She gave in to her fear and ignorance about HIV and decided that her fear was worth more than our friendship. And today, I'm truly grateful to her, for out of her decision came my greatest life lesson.
We must always allow people room to experience their fears without taking it personally.
And it is a lesson she is still teaching me today.
When I went away to college, she continued mentoring me through phone calls and letters, never too busy for me. She listened intently when I told her about college life....the professors and difficult classes, the boyfriends, and the woes of living with a roommate. She always listened and used these experiences to mentor me and teach me about life's lessons.
Eventually, she got married. They bought a house in the suburbs with a huge backyard, and had a baby. I was the baby's nanny over the summers and Holiday breaks from school. I spent those carefree days imagining my own future husband and family, desperately wanting the dream of happily ever after.
Once I graduated, my career took me thousands of miles away from my parents, but also, thousands of miles away from her.
Fast forward three years to the point where I decide to marry my husband. I knew he was HIV+ when I married him. I had done the research, I knew what I "was getting into." Telling my parents about his HIV status was difficult. (that's a whole other post!)
But telling her... was devastating. I can't remember her exact words, but I remember feeling hurt and betrayed by her reaction. And I remember understanding that if I married him, I would no longer be welcome in her home or near her children. She was certain that I would become infected, and she didn't want to risk me passing HIV to her children.
And with that, our friendship ended and my mentor was lost.
I learned the hard way that disclosure is a commitment. You have to be committed to giving people room to react to what you tell them. HIV is a scary thing for people to accept, and when they find it has "hit close to home," their fear and lack of education may cause them to push you away.
After processing her reaction, I realized her rejection had nothing to do with me. She gave in to her fear and ignorance about HIV and decided that her fear was worth more than our friendship. And today, I'm truly grateful to her, for out of her decision came my greatest life lesson.
We must always allow people room to experience their fears without taking it personally.
And it is a lesson she is still teaching me today.
Tuesday, December 16, 2008
Mourning Lay-a-Way
Today, I woke up before my husband. In the morning stillness, I listened to the sound of him breathing next to me. And once again, I told myself to remember this sound....him breathing.
I tell myself to remember things a lot.
I tell myself to remember how it feels when he hugs me, kisses my forehead, holds my hand. Remember the sweet smell of his skin, his laughter, his blue eyes, the sound of his voice......but what I want to remember most is him breathing next to me.
I know modern medicine tells me I can expect him to have a nearly normal life expectancy, but there is a part of me that feels I should prepare for the worst. Its that part of me that wants to always remember these intimate details of what he means to me.
I would never tell him I'm trying to remember all these things, I feel slightly guilty even admitting them to you, but it helps me cope with the realities of his illness. We've all seen the pictures of dying AIDS patients in hospital beds. Skinny and serious. If that's how it will end for him, I don't want to remember him like that. I want to remember him breathing next to me.
Now I know, he may not even die of AIDS. He may die in a car accident tomorrow, but its just the nature of an illness like this. You imagine the worst.
Most of the time, I'm not quite so somber and I enjoy each moment with him, not thinking about anything related to his health. But deep inside of me, in the deepest core of my heart, I'm already mourning him.
Its a mourning lay-a-way. If I do some mourning now, then when the time actually arrives, it won't be as difficult because I've already mourned some of it away. And when the time arrives, it won't be so devastating because the sound of him breathing has been seared in my memory.
At least that's what I'm counting on.
I tell myself to remember things a lot.
I tell myself to remember how it feels when he hugs me, kisses my forehead, holds my hand. Remember the sweet smell of his skin, his laughter, his blue eyes, the sound of his voice......but what I want to remember most is him breathing next to me.
I know modern medicine tells me I can expect him to have a nearly normal life expectancy, but there is a part of me that feels I should prepare for the worst. Its that part of me that wants to always remember these intimate details of what he means to me.
I would never tell him I'm trying to remember all these things, I feel slightly guilty even admitting them to you, but it helps me cope with the realities of his illness. We've all seen the pictures of dying AIDS patients in hospital beds. Skinny and serious. If that's how it will end for him, I don't want to remember him like that. I want to remember him breathing next to me.
Now I know, he may not even die of AIDS. He may die in a car accident tomorrow, but its just the nature of an illness like this. You imagine the worst.
Most of the time, I'm not quite so somber and I enjoy each moment with him, not thinking about anything related to his health. But deep inside of me, in the deepest core of my heart, I'm already mourning him.
Its a mourning lay-a-way. If I do some mourning now, then when the time actually arrives, it won't be as difficult because I've already mourned some of it away. And when the time arrives, it won't be so devastating because the sound of him breathing has been seared in my memory.
At least that's what I'm counting on.
Thursday, December 11, 2008
A Civil Rights Movement
This past election, the term "civil rights" was a buzzword. I have to admit, I don't fully understand the enormous cost, and full impact of the Civil Rights Movement; but every once in a while, when the news played clips of emotionally charged moments from that Movement....I was stunned. How could we have segregated ourselves? How could we have denied other human beings the right to equality?
We patted ourselves on the back and took pride in "how far we've come," with this historical presidential election. But, if we've really come so far....why does my husband feel he has to sneak taking his meds at work?
The truth is, people with HIV/AIDS and their families, need our own Civil Rights Movement. Every person affected by this illness has a story of discrimination to tell. Doctors that were rude and insensitive. Friends who stopped calling. Preachers who preached that HIV is "God's wrath on homosexuals."
My husband and I don't tell people anymore. And I suspect there are many out there just like us. Enduring the silent discrimination and ignorance of people who don't understand what their words or actions mean...
Yesterday at work, the topic of World AIDS Day came up. My supervisor said, "Having a day devoted to AIDS awareness just makes AIDS seem glamorous. We should have them all in quarantines....that's the real cure for AIDS."
Have we really come so far?
We patted ourselves on the back and took pride in "how far we've come," with this historical presidential election. But, if we've really come so far....why does my husband feel he has to sneak taking his meds at work?
The truth is, people with HIV/AIDS and their families, need our own Civil Rights Movement. Every person affected by this illness has a story of discrimination to tell. Doctors that were rude and insensitive. Friends who stopped calling. Preachers who preached that HIV is "God's wrath on homosexuals."
My husband and I don't tell people anymore. And I suspect there are many out there just like us. Enduring the silent discrimination and ignorance of people who don't understand what their words or actions mean...
Yesterday at work, the topic of World AIDS Day came up. My supervisor said, "Having a day devoted to AIDS awareness just makes AIDS seem glamorous. We should have them all in quarantines....that's the real cure for AIDS."
Have we really come so far?
Sunday, December 7, 2008
What this blog is about
Hello, I am a woman married to a man who is HIV positive, and I am HIV negative. In my quest to find support for others in a similar situation as me, I found there are almost no resources or available information for my situation.
Just a short time ago, I got in touch with another woman in a similar situation. We decided to start this blog. We want to meet other women out there with a situation like ours. We are hoping to change policies and procedures that will make it possible for us to get pregnant using a technique called "sperm washing."
Please join us, leave your comments!
Just a short time ago, I got in touch with another woman in a similar situation. We decided to start this blog. We want to meet other women out there with a situation like ours. We are hoping to change policies and procedures that will make it possible for us to get pregnant using a technique called "sperm washing."
Please join us, leave your comments!
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