What do success and failure have in common?

What do success and failure have in common?

Risk. They both require a risk. Some are afraid of failure and don't risk anything. Some are confident they will succeed and risk carelessly. Others take calculated risks. Whatever the nature of the risk, it is always a personal choice one makes. Whether to take a risk at all.

I once sat in on a small conference call where HIV experts and public policy makers were discussing matters of risk for women who are HIV negative wanting to have a child with an HIV+ partner. They were saying things like "liability", "risk", "treatment", "exposure", "legislation", "policy", and "conversion," I was the only one in the room who was actually living the life they were speaking about. And I kept thinking how strange it was that no one asked me about the risk I would be willing to take.

They decided for me. The risk was too high.

The risk to myself, the risk to their practices and policies, the risk of worst case scenario malpractice suits...they were all too high. I appreciated them gathering together to discuss these risks, and allowing me to be part of the discussion. Several of them were quite empathetic and are truly fighting to allow for more options to me. But...it stung that I could not decide for myself how far I would go, what risks I would take...to hold our child in my arms.

About a year later, I had a discussion with my doctor in which I asked her to research the possibility of my husband and I having scheduled unprotected intercourse to conceive a child. This is probably our last option to conceive. She told me "It is too risky." Once again, the decision is made for me. I realize it is a radical decision, and not one that should be made lightly. But after eight years of dead ends...its time to get radical and think outside of the box. Beyond the statistics, beyond the policies, beyond the medical offices, and beyond the fear.

If any of you readers are doctors, policy makers, elected officials.....please.

Let me take a risk.

Bittersweet promotion

Its been a while since I've posted. As a result of venting on this blog, I'm finding things easier to deal with when it comes to HIV related issues so my need to write things out isn't as strong.

There was a comment left on the last post that got me thinking....dealing with the technicalities of HIV medication, doctor appointments, agencies, insurance coverage, finances, etc.

When my husband and I first got married, he had been living on our state's disability income, was given $600 per month since he was diagnosed with a "fatal" disease, and was deemed unable to work. He was also granted our state's medicare, basically given free treatment and medication. It was a great set-up. Not having to worry about employers finding out about his HIV, not dealing with private insurance companies, free medication, and a check to boot!

But, he had to jump through a lot of hoops to access his health care. Had to go to a certain clinic, had limited medication options, and getting an appointment took at least 3 months. There were also many times when the quality of the care was less than ideal. Such as the time we went to a "specialist" doctor who had on gloves, a mask, and wouldn't touch him during the examination. Just looked at him from a few inches away. But...it was all free so he wasn't complaining.

Well, now he's just been offered a full-time position with full benefits. Normally this is a good thing, but we're stressing. What will this mean for us? Will he have to tell his boss and co-workers about the HIV? Will he be denied insurance coverage because of the condition? Will his new doctor be kind and gracious? Will we have to pay for the medication? What about the quality of care from the nurses, laboratories, experts and specialist?

It doesn't seem fair that a person dealing with such a serious illness should be stressing over HAVING ACCESS to quality health care when so many in this world do not. But it is the reality and we have some tough decisions to make ahead. His increase in salary means the state's medical coverage will no longer cover his appointments, medicine, etc. so we will need to make our decision soon. Does he accept the full-time position, or continue part-time? Does he accept the medical insurance and start all over with a new doctor and health care team? (He's been seeing the same doctor at the same facility for fifteen years) What if he's denied coverage? What if his boss (who is a doctor)/co-workers find out? (Did I mention he works at a hospital?)

We've asked a few benefits experts and gotten different story every time.

So...what to do. I don't know.

New Contributor

Welcome!

I am a new contributor to this blog about being an HIV negative spouse.

As of right now, I am an HIV negative "girlfriend".... Our wedding date is October 2nd .... LOL

I'm going to make this first post very brief, as I have not yet decided on my first topic. If you're anything like me, there's a whole roller coaster of emotions to encounter each day. Our thoughts and fears can hold us hostage at times and then other times we are just like everyone else - paying bills, caring for our homes and families, working hard and enjoying life. Our "magnetic" relationship is possibly the most fulfilling one we've had thus far, so staying emotionally sane has become paramount!

If you are a veteran HIV negative spouse, I give you huge kudos and a heartfelt "thank you" for persevering. I hope to be YOU someday!

If you're new here, PLEASE stay connected. A lot of times your very emotional survival will depend on others in the same situation. It can be very lonely sometimes, but getting your feelings out in the "open" yet safe environment here can empower and reassure you.

Hope this finds you all enjoying your summer months!

I know the HIV story

I know the story of how my husband contracted HIV.

He told the story once. He knew the exact moment HIV began coursing through his veins. I can't imagine how that must have felt. Knowing the precise moment....

I'm not sure if he has thought of it often, but I have. I have visualized the scene...a dark room, a frivolous friend, and a younger version of my husband. He is a lonely lost soul. He is scared, confused, wounded, and aching with shame. He knows why he came to this place, he knows where things are headed. The pain of his existence is too much to bear and so he begins. Moments later....he knows. He knows it. He feels it. He has it.

I didn't know he existed then, but I loved him. I loved him in that moment. I wish I had been there to save him. I would have held him tight. I would have told him everything is going to be alright. I would have told him things will get better. You won't always feel this way, you won't always be this lonely. You will find success, you will find love, you will be whole.

I think it takes great courage to live with deep regret everyday. I admire him for climbing up from rock bottom and succeeding in ways he couldn't have imagined in that moment. I admire him for having the courage to find love and trust love.

Yes, I loved him in that moment.....and I have loved him ever since.

Should we make this a Group Blog?

I have been contacted by several women who have read this blog, and have asked to become contributors.

There was a time when I was a part of an online support group for women who were married to or involved with men who were HIV+. That online support group was extremely helpful to me, but I think it has ceased to exist, hence a "group" blog may be a great thing!

Would anyone of you be interested in contributing to this blog, posting your own thoughts and questions, for other women who are involved with HIV+ men? I welcome the idea and just wanted to see if there is anyone interested in making this a group blog.

Please contact me and let me know!

Side effects

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.

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.

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.

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.