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Coming out...

post #1 of 38
Thread Starter 
I'm not really new... I've been on MDC and have posted here and there for the past few years. But due to some recent circumstances, I'm "hiding" my identity with a new username. I hope you'll forgive me, I know that seems shady... hopefully you'll understand...

I'm a 26 year old mother of two little girls, married to the most amazing man. And lo and behold, I was recently diagnosed with HIV. Before you assume anything about me, let me clear some things up. I'm not a drug user, I'm not a whore, I'm really not a bad person. (It's taken a long time to convince myself of that, but I'm pretty sure it's true.) I was married once, and after my divorce, I went through a crappy time in my life that involved a couple of one night stands with guys I knew, and assumed were alright. Apparently one of them wasn't, and so here I am.

It's been emotional hell. We found out when my youngest was two months old - after a drug and test free pregnancy and a picture-perfect home birth. We were trying to up my life insurance policy, and they required a blood test, and that's how we found out. The baby has tested negative, as has my husband, and my older daughter was born before it was an issue. I'm the only one, so far, that's positive.

However, we've opted to continue breastfeeding, at least up until now. Statistics show (and I've studied them carefully) that the risk of transmission via breastfeeding is extremely low, in fact it's actually 0% up until 6 months, and not much higher up to 12 months. Now that baby is 12 months, we're working on weaning. It's been a hard decision to make - breastfeeding is so important, and that immune boost is utterly important for her in this situation especially. My husband is entirely supportive, and actually encouraged me to keep nursing when I wasn't really sure. I'm at a point now though where I feel she's gotten the immune benefit she needs, and it's time to stop to protect her own health.

HIV isn't the death sentence it was once made out to be - people live long, relatively normal lives now. HIV isn't even considered a 'fatal illness' anymore - they're calling it 'chronic illness' instead. Not that that makes me feel much better. It's a struggle to get through each day without tears, even nearly a year after my diagnosis. It's hard to be a great mother to my two girls because I'm so burdened by my own troubles, but I try every day, and succeed fairly well most of the time.

The other little "issue" for us is that we don't really believe in using modern medicine. We don't vaccinate, don't attend well-child check-ups, don't use antibiotics, and in general, don't see doctors. We believe firmly in true health - eating a diet of whole, raw foods to naturally take care of one's immune system. That's being put to the ultimate test now, I'd say! I'm not great at it - I know I should eat healthier, stop doing some unhealthy things (like an occasional drink, cigarette, or my daily coffee habit.) I suppose I ought to check in at the Eating Healthy board. We're doing all we can to avoid my having to take the medications they prescribe for HIV, which include prophylactic antibiotics (read: antibiotics ALL the time, permanently) and anti-retroviral medications that are more potent than chemotherapy, and are intended to be taken for life. We actually have entirely alternative views on HIV itself, and whether it really even is all that they say it is. (There's actually an entire Mothering issue on that subject, from several years ago.)

I belong to an online "support group" message board, but it's so mainstream I often feel out of place. They all know what it's like to have HIV, but they're all firm believers that the medical profession is going to save them, and all they have to do is take those drug "cocktails" every day (which will likely make them die of liver failure long before they'd otherwise die of AIDS.)

I guess the reason I'm finally "coming out" here is that I need the support of people who think a little differently, that don't just assume that just because most of society believes something doesn't make it true. I know most of you (probably NONE of you - I've come to realize my situation is pretty darn rare, especially with my beliefs!) have ever been in this particular circumstance, so I figured I wouldn't bother telling anyone. But I need some support, and I need some encouragement and understanding, and I can't think of a better place to get it than here.

If you made it this far, thanks for reading. I didn't intend for it to get so long, but I guess I kind of had a lot to say. I hope you'll understand now why I'm doing this "incognito" for now. I'm just not ready to "come out" to the real world. But I promise I'm not some creepy fat naked guy on the other end of your computer.

Edited to add: my old username has been deleted. I'm legal now. So sorry, again, for the trouble I caused, I had no idea it would be the problem it turned out to be.
post #2 of 38
to you. Welcome back.
post #3 of 38
Welcome mama
post #4 of 38
Welcome (back), Mama!

Have you looked into enzyme therapy at all?

Best of luck to you on your journey back to good health!

post #5 of 38
Thread Starter 
Thanks so much for the link! I'll certainly look more into it. And thanks to all for the welcomes. I was so terrified to finally tell the truth, even if it is in hiding.
post #6 of 38
Thank you for sharing your story. Sounds like you are doing an amazing job mothering your little ones during a difficult time.
post #7 of 38
Welcome back, mama You are very strong and very brave, imho. Thank you for sharing your story. I'm glad you came here for support, as you know MDC is a great place to find that and filled w/ many wonderful, amazing souls.

I hope to get to know you better and wish you all the best. :
post #8 of 38
I am : for you.
post #9 of 38
I just saw something on the news the other day about research they are doing that would essentially result in an HIV vaccine...not that it's perfect of course (they think it's still about 10yrs out) but it uses a mild virus that breaks down the HIV cells and bolsters the immune system or something...it all made sense when they explained it but now I forget.
Anyway, I'm also a big believer in wholistic health via nutrition etc, but I do think there is a time and a place for some exceptions. So by all means do what you feel is best, but be willing to take things one day at a time, and if a time comes when you feel you should do something mainstream, don't be afraid to take that step too.
to you. I'm sorry you have to go undercover like this. I hope you are able to feel better about that soon.
post #10 of 38
Welcome back! I do not have HIV, but I do have alternative views about HIV, which are probably the same (or similar to yours) and I'd love to chat about that topic sometime. Let me know if you'd like to.

I'm sure you'll find the support you need here!!
post #11 of 38
post #12 of 38
Welcome "back" to MDC!

post #13 of 38

Welcome back. I couldn't read and not post. Hoping you find the support you need to ensure a long healthy life with your family. Thanks for coming and out and telling your story. It is inspiring.
post #14 of 38
Lemon juice said it best..you really are inspiring. MDC is such an incredible place for support!! These boards are the only place that I can "be me" and speak my mind of everything that is occuring in it. I hope these boards do the same for you!! Back!! I'm glad your here!! :
post #15 of 38
Thread Starter 
Thanks again for all the welcomes and acceptance, it means a ton.

Can anyone tell me how I can delete my old username? I got a PM earlier saying what I've done is against the rules, and I have to figure out how to go about fixing it so I'm "legal". They offered me the option of a temporary "guest account" to get information I need, but I'm pretty much ready to be permanently anonymous, at least until I'm more comfortable with my "status". So yeah, any suggestions on fixing this? I don't want to be a criminal, but I really need the support I've found here while I deal with this.

My greatest fear is being "found out" by people I know in real life, some of whom post here, and know me. I'm just not ready for that yet.
post #16 of 38
Welcome back mama!

post #17 of 38
post #18 of 38
Welcome back, glad you can find a way to post where you feel safe. A friend of mine has a partner who is HIV+ and he's been doing really well for years. I wish you all the best.
post #19 of 38
much love to you mama. good luck on your journey.
post #20 of 38
HUGS to you Mamma! The thing is that this could've happened to so so many women. How many ladies have had a night or two that should have been more protected, right? Hello college! So, again hugs and try not to let the guilt get you. NO guilt! Props to you for mothering your girls and being strong for them.
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