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Coming out... - Page 2

post #21 of 38
8/28/08 at 7:47pm
I can only imagine how hard this all has been for you. I hope that you find some of what you need here.

I would think that a mod could help delete the old account.

May I ask a question? Did you have alternative views on HIV prior to finding out your status? Or did your research about your status lead to your alternative views?

Again, I hope you find a great deal of support at MDC.

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post #22 of 38
8/28/08 at 7:59pm
Thread Starter 
Quote:
Originally Posted by beka1977 View Post

May I ask a question? Did you have alternative views on HIV prior to finding out your status? Or did your research about your status lead to your alternative views?

.
No, I had no idea there was a whole other side to HIV until after I found out. I just figured HIV means you'll get AIDS and die. Talk about devastation.

When I got home from the clinic and soon realized I couldn't even *feed my baby girl anymore, I started doing some research. The first thing I came across were some articles published in Mothering back in like 99 or 2000 about whether HIV was even really what they thought it was, whether it was really a transmittable disease, etc.

I'm still not sure entirely how I feel. There are two defined sides of the fence, and yet still I sit atop it. But I don't think HIV has to mean AIDS and it certainly doesn't mean death.

I've lost a lot from it already though. We'd always planned on having 5 or 6 kids. Unfortunately, unless I want to put my future babies on 12 weeks of carcinogenic "antiretroviral therapy", I can't have more kids. It's just not something we'd consider. So I'm grieving the loss of those babies I've always dreamed of, and it's a struggle for me, especially with Littlest One getting so big so fast. I've also lost the right to nurse, and that one is currently causing me tons of grief, as I wean Littlest One much sooner than either of us was ready for. When we first found out, and I did the research and found out that the actual transmission rate is practically nothing, and chose to continue breastfeeding, we faced child services showing up at our door threatening to take away our daughter because we were "endangering her life". That's about the time we chose to stop seeing any doctors - I'm not going to put up with them threatening my rights as a mother just because my views are different from theirs.

Thanks to the person who said "it could happen to anyone". I need people to say that... to realize that. "HIV" is synonymous with dirty, filthy miscreants. Most people assume since they're pretty "clean", it won't happen to them. And then I fear they'll see me as that stereotypical "dirty" person, though you'd never think it just to look at me. It's terrifying, the thought that someday people that I know in real life could find out, and what they'd think of me. So your comment meant a lot. :-)
post #23 of 38
8/28/08 at 8:19pm


I am glad you stayed at MDC.
post #24 of 38
8/29/08 at 6:19am

How strong

I have to applaud you on your sincerity [I dont mean for that to sound patronising] You must be going through an extremely difficult time in your life and your postiveness and humility are an inspiration..I dont think I could cope!

I wish you all the best in life and I hope your health remains good until you are very old!
post #25 of 38
8/29/08 at 9:24am
Welcome back!

PM a mod about how to delete your old account--Irishmommy's in this thread, so she's my pick.

I'm so glad you've told your story here--that took a LOT of guts. :
post #26 of 38
8/29/08 at 10:29am
back, mama. and much strength to you! Thanks so much for sharing your story.
post #27 of 38
8/29/08 at 2:45pm
Ironically enough, I saw a news story a few weeks back about a couple wanting to have children when one of them was HIV positive. They decided to do IVF in order to conceive bc there is some way of cleaning the sperm to make sure it doesn't have the virus and the mother should have a low viral level. Honestly, it struck me as rather odd since most IVF clinics won't even give dwarf couples a dwarf child bc they consider it not to be a 'perfect' embryo. I wasn't aware of the fact that movies like "Gattaca" were already happening in real life.

I just personally think that if you really want more children, then there is no need for you to grieve the loss of them when you have the opportunity to still have them and know that they healthy If you want more children then you have just as much right as anyone else to have more.

You could even adopt if you really didn't want to risk anything and still have more children. Who better to adopt a child with HIV than a loving mother who also has it? I don't know if adoption is an option for you not; it just would be a way for you to have more children without being concerned about any sort of transmission.

I hope you are still doing well and going strong, both for family but more so for yourself. You can't very well take care of someone else without taking care of yourself first, and you definitely seem to be doing that by asking for some support

I'm sorry to hear you are having to deal with a virus that carries such a stigma in the mainstream world. It's really not fair, but at least you have found a place like this where people won't judge you. And you are so right! HIV is not a death sentence and it most certainly does not make you a whore. Congrats on being so incredibly strong!!

On a side note, I do have links to the articles about the IVF if you are interested. I didn't put them on here bc it may not be for you and they all seem to do the whole 'moral question' bull and quite frankly, I don't think you or anyone else in your position needs to hear that crap. Some are written in a somewhat friendly matter that doesn't seem to harsh, but some people are just out right mean. I can send you some of the nicer links if you wish, or you could just google it.

Good luck in everything you do. And stay strong! You are a woman and you are a mother - you can do anything! :
post #28 of 38
8/29/08 at 11:36pm
Thread Starter 
Thanks so much for your caring replies!

IVF isn't so much an issue... DH isn't afraid of contracting HIV, which is the only reason IVF would be needed. I guess we kind of figure if he hasn't gotten it yet, he probably wouldn't in the few times we'd have unprotected sex to make a baby. (There is a fascinating study done on heterosexual, monogamous couples with one HIV+ partner. Amazingly, out of those that chose not to use condoms, not one partner contracted the disease over the course of like 10 years or something. But they say HIV is a sexually transmitted disease...)

HIV+ women are having babies all the time now. Our concern lies with the drugs required to do so. No one really knows how safe they are, and I'm the kind of mama who refuses all drugs during pregnancy. That limits our options - either have a "healthy" baby with their drugs, or go underground with an unassisted homebirth and risk transmission (if HIV can really even be transmitted that way, or at all.)

Adoption is a possibility, but a complicated one, for a lot of reasons. But it's one we're considering.

I'm learning fast though that mainstream medical folk don't take too kindly to "sick" people who refuse their drugs. I'm afraid to even go have basic viral load counts done and such now, because of the threat that they could invade my rights as a mother. They seem to have forgotten about us for now, and the last thing I want to do is remind them, so I'll do without medical care. (There is one clinic for our entire half of the state. I don't have many options.)

It's such a hugely multi-faceted situation to be in. It's kind of unheard of - mostly because most mothers like me stay in hiding.
post #29 of 38
8/30/08 at 12:00am
Welcome mama
post #30 of 38
9/5/08 at 5:53pm
Welcome, Mama. And I second that HIV can happen to anyone. I do agree with another poster that mainstream medicine isn't always a bad thing, and you may be surprised at the compassion and help you'll get if you go to the right place. You'll be in my thoughts and prayers. Good luck to you, and I hope you have more children that you want.
post #31 of 38
9/5/08 at 6:38pm
Welcome back. I'm sorry you needed to get a new username but I definitely understand how some internet people can be.

to you.
post #32 of 38
9/5/08 at 7:17pm
post #33 of 38
9/5/08 at 7:24pm
I didn't see this anywhere in the thread, I thought there was a high false positive rate for HIV, I am positive it was in the HIV issue of Mothering. I haven't researched it yet or anything, and I didn't see if you mentioned getting retested. Just some thoughts. I agree with you about the horrible drugs and the genetics - Gattica come true - yikes! Lots of good thoughts your way.
post #34 of 38
9/6/08 at 12:06am
Welcome back mama!

We're glad to have you hear and don't want you to go anywhere.
post #35 of 38
9/6/08 at 12:24am
Thread Starter 
There is definitely a high false positive rate for HIV. I wont' get into the ins and outs of the testing (it's lots of molecular biology that I had to learn in a few short weeks!) but there's a chance I'm not really positive. The thing is, no one would ever accept that as possible, not in the mainstream medical society. Sadly, the tests even come with a disclaimer: "Not to be used to diagnose HIV." There are two types of tests though, and I tested positive on both, though one was a little iffy once you get into the details of which proteins were actually present in my bloodstream. The HIV nurse here didn't even understand what I was referring to when I asked her about it though. So even if, by some freak chance of fate I'm actually negative, no one would believe it once my tests come back positive.




Quote:
Originally Posted by harrietsmama View Post
I didn't see this anywhere in the thread, I thought there was a high false positive rate for HIV, I am positive it was in the HIV issue of Mothering. I haven't researched it yet or anything, and I didn't see if you mentioned getting retested. Just some thoughts. I agree with you about the horrible drugs and the genetics - Gattica come true - yikes! Lots of good thoughts your way.
post #36 of 38
9/6/08 at 10:25am
Quote:
Originally Posted by MamaInDisguise View Post
There is definitely a high false positive rate for HIV. I wont' get into the ins and outs of the testing (it's lots of molecular biology that I had to learn in a few short weeks!) but there's a chance I'm not really positive. The thing is, no one would ever accept that as possible, not in the mainstream medical society. Sadly, the tests even come with a disclaimer: "Not to be used to diagnose HIV." There are two types of tests though, and I tested positive on both, though one was a little iffy once you get into the details of which proteins were actually present in my bloodstream. The HIV nurse here didn't even understand what I was referring to when I asked her about it though. So even if, by some freak chance of fate I'm actually negative, no one would believe it once my tests come back positive.
Ugh. I hear you. Doctors and the medical model really are so twisted up in this country it's sad sad sad. I've experienced it more from the GBS and Gestational Diabetes front, but yeah, they take their tests like the word of God, they can't be wrong. I'm so sorry you are experiencing this and I'm so happy you can gat support and understanding here.
post #37 of 38
9/6/08 at 12:43pm
I commend your bravery for writing this post. I doubt I would have the strength to do so. I truly hope you find the comfort and support that you need.


xx
post #38 of 38
10/3/08 at 4:49am
I know that this is late, but I really hope that you are loving it here on MDC!

You may also like:

Sitting or Squatting: What's Really Best in the Bathroom?
There Is Not Always a "Fix" For the Difficult Child
10 Things You Don't Need For a New Baby