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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...man(?)..or 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.

Hugs!!!

Heather.

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Dear Heather-
Sorry I didn't respond sooner! Crazy household with halloween trick-or-treating, parties, kids last minute costume changes, etc!

I also had undetectable viral loads and high CD4/tcell count pre-pregnancy. Then, post delivery my viral load went up and CD4 went down. I was really discouraged and frightened. My doctor (I've been too lucky...he's awesome) said not to worry---it's all very normal. New baby, lack of sleep, not eating enough or well enough all taxes the immune system. I took my meds for a month like clockwork---at the same times, never missed a dose and then I went off them and my viral load stayed undetectable. I don't think my doctor was thrilled but we always talk through all of my ideas, questions, thoughts, etc. I have been very lucky in that regard. We have figured out together that my body responds very well and quickly to the meds. I take them religiously for short bouts of time and then stay off them as long as I can. Sometimes 1-2 years before my viral load starts to crawl up. I know that others would say this is a stupid plan and that you HAVE to take meds constantly. Perhaps that's what works for them. For me, I've set up a different treatment plan and it really works and helps me mentally to know I'll only have to endure the meds for a particular bout of time.

I know you mentioned that sometimes you don't feel totally comfortable telling your doctor how you feel about the meds because she lectures you. I can't say I know the best approach. But, I used to be very nervous to talk to some of my doctors because of feeling intimidated. But--recently I had an OB-GYN tell me during a check up that I had yeast adhered to the walls of my ....well....you know...... Anyways, I said, "what does that mean?" She said, "Well, it means that your body isn't pushing the yeast out." I said, "Oookkay...what does that mean?" And she said, "IT could be a sign of AIDS." Normally I would keep my mouth shut and then go home and freak out. But, i was furious at how glib she was. The statement made no sense. My viral load was undetectable and CD4 super high. I sat up and snapped at her, "WHAT are you talking about? That makes NO sense. Have you actually looked at my labs? Are you honestly telling me that I might have AIDS? I want to see a different doctor. You are rediculous and out of control. How DARE you be so flippant with that information in particular when clearly that is not the case." She stuttered and stammered and went to get another doctor. When they both came back into the room I explained the situation. The other doctor redid my pap and looked at everything under the microscope right away. She looked at the first doc like she was crazy and said, "There's nothing here.She has normal lining. You need to apologize. I don't know why you told her she might have AIDS." Before I left the office both OB-GYNs were apologizing profusely. It was a huge wake-up call for me to make sure I am really taking my health into my own hands and being very proactive in handling doctors. I think they see so many patients every day that they get very rushed and offhand. So---don't be shy! Try to go into your doctor appointment fully armed with info and total honesty about your situation. If she can't understand that you are a new mom struggling for sleep and taking meds and recovering from c-section......that's her problem. Do what YOU need to do to come up with the best meds plan for you.

Do you have to be on a protease inhibitor? Maybe there's a milder cocktail that your doctor would agree to. I know my doctor says he's "saving" the protease inhibitors for when we need a change of pace to kick the virus in the butt.

And...oh my goodnes...you had a c-section?! You go girl! I wonder if that is contributing to your fatigue and trouble handling the side effects from the meds. Having a c-section is major surgery and the recovery time for some women can be really intense. If you add HIV meds to that...you must be exhausted. I did natural deliveries so didn't contend with that. But, after all the AZT during delivery, I was wiped out. For months after delivering i was still trying to get my hair to stop falling out and was dragging myself out of bed. My mom is an acupuncturist so she put together some great herbs for me that I drink to get my energy back and I made a lot of homemade chicken soup with lots of veggies. I drank/ate the soup throughout the day so that I was constantly getting nutrients. Having a baby really depletes you. Then, you added a c-section AND hiv meds AND lack of sleep. Your immune system is really fighting hard.

I know there is this huge expectation for women to be "supermoms." I always feel like I'm not doing enough and not creating a perfect enough household. My mom is the one who reminds me to nap with the kids and enlist help from friends when they volunteer it. If you have a day where you feel like you just can't do anything---then don't do much! If you are at home with Elizabeth take a loooong warm bath together and then put a blanket on the floor with a bunch of toys and lay down together and play and nap. I did that with my son when he wasn't sleeping well. At 5-6 months your daughter should be sleeping at least 8 hours or more through the night. My son was terrible--constantly up every couple of hours and it was really taking a toll. A nanny told me to do a great bedtime routine--snuggle, warm bottle, fresh diaper, and then down to sleep. If he woke up later, I had to llet him cry it out for as long as he cried and that after 3 nights he would be sleeping 8-10 hours. The first night was sooo hard. I cried all night just hearing him cry! But, by night 3 he was sound asleep through the night and so was I and I was a better mom for it. So--if Elizabeth is still waking up alot to eat, you could try to get her out of that habit. It'd probably be nice for you to be back in your bed snuggling with your husband!

You mention that you are a full time mom. Wow! That is a looong day with baby. And, I can understand feeling guilty that your husband is doing night duty and working. But, it's really important that you get to healthy and have some energy. So, if he's a loving and understanding guy---give him a big kiss and tell him to hang in there!!!

I would really just say that the thing that helped me most was making sure I was sleeping when baby was sleeping and to also doing low-key things--long bathtimes, playtime on the floor together, a walk around the block---not a 3 hour walk!

To answer your other questions....
My husband is negative. We planned our pregnancies. We have two HIV- kids and the current pregnancy. We use condoms only when my viral load goes up. I'm sure I will get blasted for admitting that. My doctor knows and does't reprimand us---he just reminds me how important it is to keep my viral load undetectable. I had natural deliveries and am planning to deliver naturally again as long as my viral load is undetectable. I have been on different meds over the years. I only once took a protease inhibitor as part of a study I signed up for. My doctor actually advised against it because he said the meds in the study were too strong. But, it was a study specific to women--so I wanted to participate. The meds kicked my butt, but I took them for 3 months. I stopped before we got pregnant because the meds are still in research phase and so i couldn't be trying to get pregnant and be in the study. Now I'm not on meds for another month. I will start meds in my last trimester. I work up until the day I deliver and then I usually take two weeks off for recovery. That said, I work in the wellness/alternative healing field so when I go back to work I am able to get massages, acupuncture, exercise, vitamins, etc. I recognize that this is a pretty exceptional situation. I also teach workout and dance classes for fun a couple times a week at a local gym. It forces me to workout even when I don't want to! I do have my days and sometimes weeks when I feel like I just can't move from the couch. I have to go to work to make sure everything is running smoothly--but I definitely have my ups and downs in energy level. If I start eating out or eating pizza, junk, etc. I feel much worse. So, i do try to focus on eating well.

My family knows that I have HIV and they are really helpful/supportive. My husband's family doesn't know and I'm sure they would not be happy about the situation. But, his family doesn't live near us so it doesn't really come up as an issue. If you need help with the baby--you don't need to tell your husband's family why you are exhausted. Could you tell them something else? Like maybe you are having "health issues post c-section" or something vague like that?"

I have been positive for 10 years now. I think I know when I was infected and I started meds about 4 months after I contracted HIV. I took meds for a year--never missed a dose and was totally scared at the idea of becoming resistant to the meds. But, after a year i was sick and tired of being sick and tired so i stopped the meds. And...my viral load didn't really go up much after that. I think it's because I started meds so early after contracting HIV---but who knows.

I worry about my husband contracting it, I worry about being around and healthy for my kids, i worry about my future and my family's future....probably the same things you worry about too! But, I'm really hopeful for the future and just try to do the best I can as a mom juggling all the responsibilities. I think there's so much pressure in society to be supermom. So many commercials with the ideal soccer mom running around to sporting practice, looking beautiful, quiet kids, home cooked meals, neat homes, etc. But--it's just not realistic. Just do the best you can and take as much time as you need to rest and recover.

I don't participate in support groups because I don't find a lot available where there are other women that I can talk to. But--I really like this forum for asking different questions and seeing what people talk about.

I was really excited to read your post.....(not excited that you are really fatigued and feeling icky).....but I was excited to see somebody in a very similar situation. I wish I lived nearby so that I could come help you with Elizabeth and make you some chicken soup and a yummy protein shake!!!!

Keep in touch and let me know how its going and how you are feeling. I hope my response wasn't all over the place. My son is jumping on me telling me about spiderman and my husband is bugging me to cook flan (which I have NO idea how to do!) while I'm typing this response. I keep trying to tell them that I just need 20 minutes to focus on this email...but it might have come out super disjointed and scattered.

Let me know if you have any other questions and keep your head up. You aren't doing anything wrong and don't have to worry. You won't die without the meds......you might need a change. Don't feel guilty for not taking them. Just get in touch with your doctor as soon as you can. And, don't forget that you just had a c-section and HIV meds a few months ago and you need a lot of time to recover from that. It might be at your daughters first birthday that you look around and realize you feel like you are coming out of a fog and finally feeling more energetic. My son just turned 3 and sometimes I baby him too much and my husband tells me to stop it because my son is whining to much and demanding to be carried and constantly hanging on me. I always tell him, "You know what? I feel like I missed the first 8 months of his life because I was sick and exhausted. Now I want to enjoy every second."

You'll likely be around to see your daughters children so take it easy as much as you can and sleep with your little one whenever you get a chance to let your body recover from the delivery and adjust to the meds. You have many many years ahead of you to worry and stress. Try not to pack it all in to tomorrow.

Also--if you cannot afford massages and other things like that...check with local HIV/AIDS offices. I know that a few years ago there were some local massage therapists in my city who offered free or discount massages for people living with HIV. You might be able to find a person who would come to your house and do massage while your daughter naps. I know that any kind of pampering or gentle healing in terms of massage, acupuncture, good food, exercise really will go a long way for you...

Big big hugs,

Tiffany

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