World HIV/AIDS day (a personal story)

[creatingkarma]

Yesterday was World HIV/AIDS Day. I was going to make this post then, but didn't have time, so I'm posting it today. I would like to share a personal story about a good friend of mine who has had HIV for 13 years. She was married, found out that her husband was having homosexual affairs, & divorced him. About 6 months later, she got real sick & wasn't getting any better. The doctor gave her an HIV test & it came out positive. She thought it was a death sentence & that she was going to die real soon. Well, 13 years later, she's still here & doing well. She fell in love & remarried a year later. I think that her current husband is a wonderful man. Not many people would marry someone that has HIV. Well, then they accidentally got pregnant. It was a very scary time for her - not only worrying about her child having HIV, but also worrying about how the medications would affect the child's development. Her daughter was born, everything develped & intact, but HIV positive. She had a lot of respiratory problems when she was born & was in the hospital for a long time, but all that has gotten better. Her daughter is now 10 years old & fairly healthy considering. She goes to St. Jude's in Memphis every 3 months for check-ups. The meds make her throw up at least a couple times a week, but that's better than the alternative. Well, fast forward a few years, they accidentally get pregnant again. Since her 1st child was born, the doctors have figured out that there is less chance of the baby getting HIV if the baby is delivered by c-section. Her new daughter was born healthy & HIV free. What a difference a few years make! Too bad they didn't know that 10 years ago. When my friend was diagnosed, they had no idea how long she would live. They thought that she would be gone soon. They really didn't expect her to still be here 13 years later & they still don't know how long she will live. The meds that she takes are awesome in the fact that they keep her HIV at undetectable levels, but it's not enough. She develps tolerance to the drugs, then has to change to something more stronger. What she is taking right now is the strongest med that's out there. She worries about what will happen when she develops a tolerance to this drug since there's nothing left for her to try. She worries everytime that she gets a cold or the flu - is this what's going to do me in? She worries about her daughter with HIV. They really don't know much about children born with HIV. They have no idea what their life expectancy is; they have no idea what the drugs will do to these children in the long term. I feel so bad for her. I can't even imagine the grief she holds knowing that she gave this to her child. I can't even imagine the horror of explaining this to her daughter when she's old enough to understand. How do you tell your child that you gave her a sexually transmitted fatal disease? So sad. When my friend 1st found out that she had HIV, she told all of her friends. Sadly, they are no longer her friends. Everyone ran as far away from her as they could. She lived in a small town, so it didn't take long for the entire town to find out. She ended up having to move far away & I'm glad that she did because she found me. It took her 4 years to finally tell me that she has HIV. She was so scared that I would do the same as all her other "friends". She was crying so hard & made me promise that I would still be her friend before she told me. I felt terrible for her & we cried together. There's still so much stigma wrapped around this disease & people are uninformed or refuse to believe that they can't catch it by just being around someone with it. She feels like she has to hide it & I don't blame her after all that she's been through. Her husband has not contracted it. That should tell everyone right there that it's not a communicable disease, but a lot of people think that everyone with HIV should be kept from the public. They're so wrong. I know that we all have our struggles with IC & all of our other problems, but I for one am thankful that IC doesn't bring along all the grief, struggles, & worries that my friend has battling HIV. I just couldn't imagine. I want to help break down the barriers of this disease. It can happen to anyone. These people didn't ask for HIV any more than we asked for IC. Thanks for listening.

[July]

Thank you for bringing this to our attention! You sound like an awesome friend to this woman and her family! God bless you! :)

[poetgirl]

This is an amazing story, thank you for sharing. I did the AIDS Walk this year because this is an issue I care deeply about. HIV, while a serious disease, is no longer an immediate death sentence (at least not in first world countries) like it was when it was first discovered. With good health practices and medical treatment, most people can live full, productive lives with HIV.

I have a family member who has lived with HIV for nearly 20 years. Like your friend, he is considered a long-term survivor. His former partner of 10 years never contracted HIV -- in fact, his ex-partner's previous partner (they were together for about 20 years prior) died of AIDS several years ago, but he's still HIV-free. For reasons no one knows, some people are highly resistant to viral infection, which may well be the case with your friend's husband. However, I'd be careful about saying that HIV is not a communicable disease. It is not a casually communicable disease in that you can be around people with HIV and not worry about getting infected with the virus. But the pandemics in Africa and Asia make it clear that it is communicable through sexual contact and some other forms of foreign entry where the virus can cross the bloodstream (sharing needles, etc.)

I am curious (and I am not being judgmental) that your friend did not practice two forms of birth control (for example, the Pill and a condom) to ensure not passing the virus on to her husband or to conceive a child with HIV. Granted, I know sometimes things happen no matter what and we all make choices based on what we think is the right thing to do in a particular situation. It seems that both she and her husband were taking some risks in their intimate life that could have adversely affected his health at the very least, and has affected the health of her first-born. Have they faced criticism because of that? If so, what was their response? I'm glad that medical breakthroughs have allowed their second child to live HIV-free. What a huge relief that must be to your friends!

Thank you for taking the time to put a face on HIV. You are right that there is still much stigma and misinformation about the disease. It breaks my heart to think there are millions of people around the world with HIV who do not have access to adequate medical care or treatment that can prolong their lives and keep them healthy. I read an alarming statistic yesterday -- 6000 children A DAY are orphaned because of AIDS.

[creatingkarma]

No, my friend did not practice 2 forms of birth control. They were using condoms & condoms do break sometimes. By communicable, I should've been more direct in saying that it's not casually communicable, like you said. Just being around someone with this disease will not infect you, but yes, if you have sex with or share needles with someone who has it, you are at risk. I do not say unprotected sex here either because like I said before, condoms break & then you could be at risk of infection.

[Sarojini]

Thanks for the story; it really is nice to hear that your friend is doing so well!!

[poetgirl]

Scary that condoms can break so easily (has happened to me before...) I wish your friend and her family much good health and happiness. :)

[jaime15]

Karma,
You are such a good friend........many hugs to you both......... :)

[Dixiefireball]

wow what an amazeing story. Your so right they didn't ask for this and it was unfair in so many ways but the wrose thing was the way she was treated by the people who claimed to be her real friends.
Real friends wouldn't had ran away from her they would stuck up for her and been by her side.
Thanks for sharing her story with us. It really will make people stop and think twice on how they look at life.

[rhea]

Thank you so much for sharing your story. HIV has also touched my life. My big brother was diagnosed almost 3 years ago. He actually got the disease from a woman whom he was living with and was planning on spending the rest of his life with. Here is the kicker..she was dx'd 3 years prior to meeting my brother and did not inform him so after living together for a year they stopped using codoms as she was on b/c. She has since gone to jail for non-disclosure and I truly hope she stays there. He has just had a total hip replacement and its amazing how much having the new hip has improved his T-Cell count and his total health. It is a terrible disease and I think as many people as possible need to spread the word that it doesn't matter who you are, where you are from or what you have the disease does not care. He is lucky and is a Veteran and all his meds are covered at the VA-but he has gotten involved in the community and it is amazing how fast HIV can turn into AIDS without the proper meds, good diet and a little bit of compassion. I tell my boys all the time....NO WOMAN IS WORTH DYING FOR...we need to teach our children SAFE SEX at all times. No one should be afraid to talk about sex with their children.

[Dianne]

My brother and only sibling died in my arms from AIDS in '94. He was a long term survivor then at 10 yrs. I too had to keep it very secret because as a nursery nurse, I knew there were many who wouldn't want a nurse caretaking an AIDS patient to take care of their baby. Just the way it was back then. I lost many friends. One asked me to get out of her car when I told her and never to hug her again. Then she disappeared. One told me never to bring my brother to her house again and that she threw away everything in her house she thought he had touched. I got some hateful letters from conservative religious that said "I hope you won't mind my saying this but after all, the wages of sin is death and don't you think your brother got what he deserved?" To which I replied "really, well what did I do?" Then there were the drs. telling AIDS jokes at work which sent me to the bathroom in tears. Horrible chapter that I don't care to repeat. But I miss my brother. Thank you for not abandoning your friend.

[rhea]

Dianne..I send you hugs for all the ones you did not recieve when your brother was ill and after he passed. Its hard to believe but some people do still have that mentality. I am in the process of helping him "sue" the VA due to some remarks made to him by his surgeon...A LICENSED MEDICAL ORTHOPAEDIC SURGEON...made my brother wait 2 years for the new hip because he figured the HIV would kill him first. In my opinion that man needs to be repremanded by the military in some way. Anyways, wont get started on that frustration. I know you miss your brother because I know if anything ever happened to mine a part of me would die too. God bless..

[creatingkarma]

Dianne, I'm so sorry to hear that you & your brother were treated that way! I'm also sorry for your loss. Your brother did not get what he deserved! I am a Christian, but would never judge or treat anyone like that. Everyone has sinned in their life & God does not put sins on different levels like we humans tend to. Jesus would not have said those things & those "religious conservatives" need to reread their Bible. Sorry to get on a preaching role, but people who call themselves religious & act like this really irritate me.