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Reged: 10/17/08
Posts: 6
Re: Help! Drugs or no Drugs? Options?
      10/29/08 02:24 AM

Oh my god!!!! Thank you. And Congratulations on the baby to be!!!

You are really the only person who responded that I could connect with. I received several responses but I felt that no one really understood where I was coming from or even what I was talking about. Pardon the long rambling message, I haven't spoken to anyone about all this in a while.

I have not become resistant to any of the drugs either. I have been on and off of them since I was diagnosed in 2001. Before I became pregnant I had an undetectable viral load and 700 or so tcells. And it was all going in the right direction without the meds. Then I had to take the meds while pregnant. I actually really didn't notice the side effects then because I was so sick from being pregnant (Why is it called "morning" sickness?). I took them to reduce the risk of transmission to the baby. I also had a c section. I am very grateful that she is negative and so is my husband. But it has been all down hill numbers-wise since then. Elizabeth is getting better at sleeping, but it's still rough. Interrupted sleep doesn't help your immune system as you well know. So I have been sleeping on the couch and my husband has been sleeping in the bedroom with the baby. It doesn't seem fair to him but I have to be healthy and ALIVE for them. I generally put HIV on the back burner of my life, try not to dwell too much. But I have had a very hard time doing that since my doctor told me my tcells had dropped so dramatically and so low. They have us programmed to remember that below 200 means you have AIDS. The big scary 4 letter word. Which brings me to the next enemy of my immune system...stress. It's difficult not to when I keep wondering if I will be able to care for Elizabeth or be around for her in the future. That coupled with the usual stresses of everyday life like money, housing, jobs, family, and being a recovering addict as well is probably feeding the decline of my tcells. So... I am babbling and I apologize, but I feel that you understand and I need to talk with SOMEONE...ANYONE who does. My closest friend got HIV from the same man as I did and we have supported each other for quite a while. Going to doctors appointments, calling each other when things were difficult like disclosure to boyfriends and all that stuff. But she can't understand this. I tell her that the meds give me flu like symptoms, that my body aches all over and that I can't even carry my own child 100ft without feeling as if I might drop her or fall down myself and she tells me that she had similar side effects. She tells me that they lasted about 4-6 weeks and that I should stick with it...for the sake of myself and my family. It hurts when she says this. She can't fathom how hard it is to get very little sleep or interrupted sleep, to be running to the bathroom hoping that the baby will be okay, and barely being able to pick her up and carry her. I can't manage that for even a week. The second day I took this cocktail(supposed to have VERY minimal side effects) I drove 20 miles away from home to get some food and walk with the baby near the water. As I arrived I realized that I was feeling worse and worse. I took her out of the car but was unable to even walk around the parking lot, much rather the boardwalk by the harbor. I was so scared that I almost had my husband leave work to come get us. I have very bad reactions to most meds I take. Sustiva gave me nightmares that I still cringe at the memory of and I had the rash from it as well. Rayataz shut down my liver. There's more, but I am sure you get it and can relate in some way. Anyway... I have an appointment with my doctor this coming Monday. I'm going to have to break it to her that I haven't managed to take the meds this month and tell her that my plan, if possible, would be to make a serious effort to eat better(even a little improvement as you said is better than nothing), take walks on a fairly regular basis, and try to sleep more consistently. I already feel better since my husband has been taking night duty. But that can't last forever because he's the soul bread winner in the family and I love him and don't want to kill him from lack of sleep. As you said though, she is getting better at sleeping. It really has a lot to do with what I do with her during the day though. She sleeps a whole lot more if I take her out and about. She loves being around people and exploring the world. I do too but I don't have the energy all the time. I wish that my parents lived closer. They would help me out in the way you suggested. My husband's family doesn't know about the HIV, so it is difficult to explain to them how very important it is to have consistent help. I do have another friend who is a nanny and is all too willing to help. But she just got a job taking care of a 5 year old and 5 month old and I feel like I am burdening her with more child care since I can't pay her. I'll figure it out somehow. Or I'll land in the hospital eventually. Sometimes I would just like to stay in the hospital for a couple days just to get a break. But I should watch out for what I wish for. They don't do well-stays at any hospital I know of... I think that's called a hotel:).

(My god...I have written way too much. I will understand if you gave up lines ago:). )

My other concern is that, although I love my doctor(she's fantastic), I am also kind of intimidated by her and I am afraid to tell her that I haven't taken my meds and that I intend on continuing to do so unless she can find me something I can function on. I am afraid that she will "fire me" as a patient or reprimand me. She once did because I wouldn't let her student doctor touch me. But I was very ill with a sinus infection while I was pregnant and I hadn't met the man before and she was not present in the room. So I felt like I was totally within my rights in that situation. I don't think I am entirely right in this situation. I feel like there's a part of me that is being a sissy and I just need to bare down and take it like a strong woman I guess. But how do I manage such debilitating side effects while being the sole caretaker of a six month old 10 hours a day while running on varying amounts of sleep? And the devil on the other shoulder says that if I don't take the meds like a big girl then I won't even be there to take care of the baby at all. BLAH!!! SO sick of the circles I run in my head.

I do have a few questions for you... As I have said, I am so pleased to have read your response. I feel like your answers may make me feel less alone. When are you do? Do you know if it's a boy or girl? How old are your other children? Boys, girls? Did you plan your pregnancies? If your husband is negative, how did you protect him while you were trying to get pregnant? Did he have to take the cocktail too? (They put Scott on a regimen once just because we had sex with a condom and my period came. There was a whole bunch of blood involved. I think they over reacted, my viral load was well under 1000 at the time and he was wearing protection for gods sake!) Do you work other than being a mom(which is work, very commendable work)? Were you HIV positive when you had your children? Have you had a c-section or natural child birth? Are you on the same cocktail while pregnant as you were before? Did you see a drop in tcells after your babies? Does your extended family know about your status? If not, how do you manage(because my husband is negative, I don't dare share my status with his family for fear they might try to dissuade him from being with me out of fear for his health)? Is your husband positive? The kids? How long have you been positive? Do you participate in any support groups where you live? Questions, questions. I don't know many HIV+ women here, sorry for the inquisition. There are lots of gay men because of the proximity to Provincetown, MA. They are very cliquey. Lots of HIV+gay men support groups. They don't really like to let any straight women in.

I obviously need to talk to someone. Thanks for baring with me.

I wish you and yours well and that you have a happy and healthy pregnancy. Enjoy the new one when he or she arrives.



Post Extras: Remind Me!     Notify Moderator

Entire thread
Subject Posted by Posted on
* Help! Drugs or no Drugs? Options? hblue23 10/17/08 03:49 AM
. * Re: Help! Drugs or no Drugs? Options? Lovinlife   10/27/08 08:47 PM
. * Re: Help! Drugs or no Drugs? Options? hblue23   10/29/08 02:24 AM
. * Re: Help! Drugs or no Drugs? Options? Lovinlife   11/03/08 12:49 AM
. * Re: Help! Drugs or no Drugs? Options? Margaret   10/23/08 03:13 AM
. * Re: Help! Drugs or no Drugs? Options? ScotCharles   10/17/08 03:19 PM
. * Re: Help! Drugs or no Drugs? Options? hblue23   10/29/08 03:04 AM
. * Re: Help! Drugs or no Drugs? Options? Seekyah   10/17/08 05:29 AM
. * Re: Help! Drugs or no Drugs? Options? Jackie__Blue   10/17/08 10:48 AM
. * Re: Help! Drugs or no Drugs? Options? magneticmama   10/23/08 07:28 AM
. * Re: Help! Drugs or no Drugs? Options? hblue23   10/29/08 03:47 AM

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