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VannaMazing
06-26-2011, 07:59 PM
So recently found out that I'm pregnant, I've been freaking out, and have been wayy to stressed. I need advice, not like with the baby stuff (though that would be nice too) but dealing with Lupus AND having a baby.

HELP!

magistramarla
06-26-2011, 08:22 PM
Vanna,
Congratulations! First, calm down!
We've had a few ladies here who have had babies fairly recently. Have your rheumy and OB talk and decide which meds that you can safely take while pregnant. I'm not sure, but I think that several of the others have continued to take Plaquenil.
I had all five of mine long before I had any AI issues, and I was a midwife's assistant. Here are some general tips. Avoid salt - it can add to problems with edema. Get some bulk raspberry leaf tea from a health food store, and drink lots of tea. My midwife swore by it as a tonic for pregnancy. It's perfectly safe and good for you.
Eat a very, very healthy diet. Drink lots of water and milk, if you aren't lactose intolerant. Also, increase your intake of protein. The baby uses it to grow, form it's brain and other organs.
Exercise as much as you feel like - it's good for both of you. Read and learn as much as you can - I recommend The Womanly Art of Breastfeeding and almost anything by Dr. Sears.
(My youngest called me - she has an 18 month old - so I had to leave this post for a bit)
Anyway, just enjoy being pregnant. For me, it was when I felt the most healthy and alive. I enjoyed it so much, I did it five times - LOL !!!
Hugs,
Marla

Gizmo
06-26-2011, 08:47 PM
First of all, congratulations! Have you seen your rheumy and OB doctor yet? Have you been on lupus meds? Can you tell us more about what your lupus is like - it would be easier to help if we know what your limitations are. Are you looking for ideas for dealing with lupus during your pregnancy or how to manage to care for the baby afterwards?

According to The Lupus Book, by Daniel Wallace, MD "Patients whose lupus is mild or moderately active at the time of conception have a 40 percent chance of having no change in their disease, a 40 percent chance of flaring and a 20 percent chance of improving." He also says that 30 percent of all births to lupus patients are premature - the risk is highest if you have antiphospholipid antibodies. If your doctor hasn't already checked for that, it would be a top priority, according to Dr Wallace. I had pre-term labor with both of my daughters, and ended up on bedrest and in and out of the hospital. My advice, from personal experience, is to really pay attention to your body and don't mess around if you think you are having contractions.

tgal
06-26-2011, 09:03 PM
While I can't give any advice about the baby because I was spayed long before I was diagnosed (lol) I did want to welcome you back and say congrats! No stress is allowed. This is gonna be a great thing!

steve.b
06-26-2011, 11:24 PM
i am a father of 2.

enjoy the pregnancy-- be happy.

do not stress about what might happen, calmly talk to your rhuemy and ob.

congratulations.

giggle
06-27-2011, 02:16 AM
Marla... pregnancy was the same for me! I have never in my life felt so alive and healthy... even though I had active lupus and a giant tumour! Funny huh : ) I may still feel awesome if I hadnt had a huge metabolism crash and ended up enormously fat... losing all that weight had consequences. Now I just always feel sluggish and horrible. But I get the feeling I am a lot sicker than I would have myself believe lol

Sorry for the rant there lol CONGRATULATIONS! It doesnt matter your initial outlook... children bring such a fantastic new branch to your life. : )

lovedbyHim
06-27-2011, 04:04 AM
Hi Wanna, I can understand your fears as I was sick when I had my babies but want diagnosed at the time. I had some complications, but I must tell you, I had 4 beautiful babies! I was very tired but in truth too happy to care. Three of them were unplanned and a blessing from above. Those were the happiest times of my life.

I have to tell you I am excited to go through this with you! I hope you keep us posted with all the details, like when the baby first moves in your belly! None of my babies were mistakes, only blessings.

Enjoy this beautiful time of your life. Tammy

Gizmo
06-27-2011, 07:19 AM
First of all, congratulations! Have you seen your rheumy and OB doctor yet? Have you been on lupus meds? Can you tell us more about what your lupus is like - it would be easier to help if we know what your limitations are. Are you looking for ideas for dealing with lupus during your pregnancy or how to manage to care for the baby afterwards?

According to The Lupus Book, by Daniel Wallace, MD "Patients whose lupus is mild or moderately active at the time of conception have a 40 percent chance of having no change in their disease, a 40 percent chance of flaring and a 20 percent chance of improving." He also says that 30 percent of all births to lupus patients are premature - the risk is highest if you have antiphospholipid antibodies. If your doctor hasn't already checked for that, it would be a top priority, according to Dr Wallace. I had pre-term labor with both of my daughters, and ended up on bedrest and in and out of the hospital. My advice, from personal experience, is to really pay attention to your body and don't mess around if you think you are having contractions.

After reading everyone else's posts, I realized this was kind of a downer. Like giggle and lovedbyHim, I loved being pregnant. I hadn't been diagnosed with lupus, yet, so I was blissfully happy - despite the bedrest. I would have done it again in a heartbeat if it weren't for the pre-term labor (I couldn't take care of my kids from the bedroom). There is nothing in the world like feeling your baby move inside you, trying to imagine what they will be like when they are born. The book I appreciated the most was What to Expect When You Are Expecting. Having pre-term labor, I loved the chapters on how my baby was developing, week by week. It made it much more real, and motivated me to take care of myself. Have fun! You will always cherish these 9 months, even if you are barfing the first 3 LOL.

rob
06-27-2011, 08:34 AM
Vannamazing,

Advice on this topic is, well, it's above my pay grade! It looks like you've been given some good advice already anyway.

I really just want to say congratulations. Sometimes, we can all go an awfully long time without good news, or something to smile about. This is definitely something to smile about!

Rob

VannaMazing
06-27-2011, 06:03 PM
Thanks for all of the advice and all of the congrats. I definietly needed to hear someone say that, most of my family has just been crying when I tell them (not tears of joy). My SLE isnt that active. I just found out in Janaury. Mine mostly just bothers my joints. My doctors took me off all meds until further notice. I'm trying to get reffered to an OB but the people at my doctors office cant seem to give me the number when I can get them to answer the phone. I am truly excited and blessed to have this happen, I guess babies never come at a time when its "best" but they come at a time when you need them.

Gizmo
06-27-2011, 06:30 PM
I guess the good news about your family is that they are taking your condition seriously. Some folks here have families who don't believe that they are sick. I'm sorry that this isn't the joyful time that it should be, but hopefully all that concern will translate into lots of pampering. Your new family here is cheering and you may become a roll model for others who have mild disease and want to start a family. I dare say quite a few of us had lupus when we were pregnant and didn't know it, and things turned out just fine.

VannaMazing
06-27-2011, 06:38 PM
well everyone is starting to get excited. it will just take some time. the situation isnt great, but its okay.

Saysusie
06-28-2011, 12:28 PM
Many congratulations to you!! I am glad to hear that your family is starting to get excited and I hope that you do too. Try not to stress about this as stress is not good for the pregnancy or the Lupus.
Do you have a rheumatologist? If so, make sure that (when you find an Obstetrician) your rheumy and you OB work very closely together. You are in good shape to be pregnant as your symptoms are mild and your are not taking medications at this time (although most medications for Lupus are safe for the pregnancy - there are only a few that are not recommended).
As you've been told, successful pregnancies with Lupus are more common than not. It is a rare occasion, these days, that pregnancies are not successful, especially in cases like yours.
We are all so very happy for you :-)

Peace and Blessings
Namaste
Saysusie

VannaMazing
06-28-2011, 10:18 PM
My rheumy is sending me to an OB so that way I know they can keep in contact. my fist appointment is on the 13th of July. I wish it was sooner. I hate waiting! lol Keep you all posted, and of course, pictures will be posted so everyone can see. Its good to talk to everyone again. I missed you guys!

magistramarla
06-28-2011, 10:26 PM
Hey Vanna,
We're all willing to be online aunties, uncles and grannies. I have three grandchildren. My hubby likes to say that when it comes to grandkids, we don't get a choice, but we can sure choose to love and spoil them. Those three boys are very special to us!
Many hugs to you,
Marla

VannaMazing
07-10-2011, 11:05 PM
Just anted to let everyone know, that, I was at the ER last night, I Was spotting, and they did an ultrasound, my baby has no heart beat and they dont think that is going to change. I really want to thank you all for your support, and I'm just so lost. I feel as though, I shouldnt be here if my baby isnt here. Espeically because I feel as though its my fault, since I have lupus. I feel as though my baby never stood a chance

tgal
07-10-2011, 11:34 PM
Just anted to let everyone know, that, I was at the ER last night, I Was spotting, and they did an ultrasound, my baby has no heart beat and they dont think that is going to change. I really want to thank you all for your support, and I'm just so lost. I feel as though, I shouldnt be here if my baby isnt here. Espeically because I feel as though its my fault, since I have lupus. I feel as though my baby never stood a chance

Vanna please take a deep breath and listen. I know where you are and what you are feeling. I had 4 miscarriages before I went full term with my daughter. I know the pain that you are feeling but there is not fault here. It is not your fault that you have Lupus. Many people here have gone full term with their labor even with Lupus.

This does not mean that you can't have a baby. It also doesn't mean that you are not allowed to mourn. What you are not allowed to do is blame yourself for something you have no control over. The next few days are going to be very hard to deal with and my heart is breaking for you because I know what those days are like. I am going to PM you my email because I can get that even when away from the computer. I will be here whenever you need me. I am so very sorry for your loss and if you need to talk I am just one email away

steve.b
07-11-2011, 03:30 AM
it is not your fault.

Gizmo
07-11-2011, 03:35 AM
Oh Vanna, I am so sorry. I can only imagine the pain you are feeling and wish that there were a way to make it better. Many women without lupus miscarry, so lupus may not be the "bad guy", although it does make it more likely to happen. If there were a way to prevent lupus, we'd all be out there beating drums and spreading the word - but there isn't. You are in no way responsible for your disease. In every account I have read by a woman who has lost a baby, the woman blames herself because she did something or didn't do something. Bad stuff happens and most of the time we don't know why.

Have you thought about talking with a counselor or psychologist to help you work through this? You sound like you really need support and a professional can give you a different perspective and ways to cope than your family can - especially since they are dealing with their own feelings about this loss. I will be thinking about you and really hope that you stay in touch. We stick together through good times and bad around here.

Elo
07-11-2011, 05:07 AM
Oh, gosh...
I'm so sorry. I can't even say how sorry I am - when I read that, my heart just dropped. The important thing that you need to realize though, is that is in no way your fault. Not even close to it! People carry babies to term even though they smoke and do drugs and drink alcohol... And it's not fair. At all. It shouldn't happen like this - the irresponsible and uncaring people should be the ones to go through that pain, not you. It's not your fault, not anywhere near it. It's just the way things happen sometimes... and ****... that's not helpful at all, is it? *sigh*. Why we here get the hard burdens when so many just skate by is so beyond me.
I wish there was something I could say that would help, but I know there isn't. Just please hang in there and take it one day at a time. Remember that it's NOT YOUR FAULT. Don't you EVER think that.
You DO deserve to be here - and you have so much more right to be than so many others. That may sound harsh, but it's true.
One day at a time, one breath at a time... you can get through this. My heart is heavy for you... but we are all here supporting you, all here for you.

steve.b
07-11-2011, 05:12 AM
One day at a time, one breath at a time... you can get through this. My heart is heavy for you... but we are all here supporting you, all here for you.

thank you for saying what we all feel.
one day at a time, one breath at a time..........

lovedbyHim
07-11-2011, 05:36 AM
Just anted to let everyone know, that, I was at the ER last night, I Was spotting, and they did an ultrasound, my baby has no heart beat and they dont think that is going to change. I really want to thank you all for your support, and I'm just so lost. I feel as though, I shouldnt be here if my baby isnt here. Espeically because I feel as though its my fault, since I have lupus. I feel as though my baby never stood a chance

Oh Sweet Girl, please listen carefully to what I have to say, okay? I lost two babies, before I gave birth to 4 beautiful children. One was planned all the rest were wonderful surprises! Misscarriages happen to many women who are healthy dear. I was sick and had 4 healthy ones. Big fat healthy babies! You keep talking this through and the pain will pass in time. My daughter just told me she was pregnant this week. She miscarried 2 months ago. We are so happy for her. Please keep us posted. PM me if you want to cry and I will hold your heart carefully dear.

magistramarla
07-12-2011, 02:20 PM
Hi Vanna,
I'm so sorry. As others have told you, many women miscarry, and not just those who have something like Lupus.
I lost a set of twins on my third pregnancy. We both mourned their loss, but it made us very determined to try again.
My hubby left for Officer's training, which got him in great shape. He bought me a gym membership before he left, and I got into great shape.
When he graduated from OTS, it only took three weeks before our son was conceived!

So my advice to you, sweetie, is to do your mourning now. When you are ready, work on getting your health to the very best that it can be, and then work with your docs to try to conceive again.

Hang in there. We're all here for you!
Hugs,
Marla

Saysusie
07-12-2011, 02:25 PM
I, too, just wanted to tell you that you are not alone. I also had two miscarriages due to this disease. I also gave birth to two beautiful children. I know that this loss is devastating to you, but it is not your fault. You did not go out and solicit this disease...you did nothing wrong to get this disease...you did nothing wrong because of this disease. What you are going through is a terrible, terrible loss, one that too many of us know about personally. But, please, please know that this was, in no way, your fault.
We are all here for you and we are wrapping our arms around you to bring you a bit of comfort during this difficult time. You are in my heart, my thoughts, and my prayers.

Peace and Blessings
Namaste
Saysusie