Hello all,
I am a recently diagnosed "childless" relatively young woman living with Lupus. While I'm not quite ready for kids yet (hopefully in the next 3-5 years), I'd like to be aware of any challenges I should expect. Maybe some tips and advice on prepping my body for this "massive" undertaking, or dare I say alternatives I should be thinking about.
I'm am really appreciative of this forum and all of you who post. It has been an godsend and extremely helpful. Thanks to you all.
Pregnancy was great for me. I went in remissionn. It’s the raising of the kid. L
Ol. Check out the thread on motherhood.
I ended up adopting 2beautiful children. I was older and per my doc at real high risk with medication I was on. I didn’t want to take a chance on my or my child’s health so I chose adoption. And I don’t regret it for a second. I couldn’t imagine my live without my kids. They were meant to be my family.
So, I was just diagnosed about 4 months ago. I did not know I had it. from what I have read you don't just get it one day it is in your body when you are born, but I was going to see my dad he smokes and my doctor put me on a sulfa based pill and I had a bad attack. Not knowing it was lupus.
So I have 4 children 3 boys and a girl. all mine my 1st child is 20 he was born 4 weeks early and was in icu for 3 weeks with his lungs not working and he had that yellow skin stuff. he is a healthy baby boy now.
My next child a boy was born 2 years later, and he was 2 weeks early, after being born he was good until he was a year old then he went to the hospital where his lungs collapsed. but he is good now.
years later I had a daughter,(8 and different dad ) my daughter is healthy born healthy but was born 3 week early, everything was good with her and she left the hospital when I did and is a healthy 10 year old.
3 years ago, we wanted to try again, miscarriage, not once but twice. 6 weeks along a dnc. and off again.
then there is my son he is 2 he was born at 37 weeks I was in labor with his for a month and was dilated 3 and my doctor pushed off the time. the day he was born my doctor had to break my water, and he was born 45 minutes later healthy.
then I went and got my tubes tied. I have had what my doctor thinks 2 more miscarriages.
so what I learned from each child, as soon as you know you are or think you are pregnant, see an ob, not just for the pills but if something is wrong, you will have a less chance of miscarrying, here is why I say this, with my miscarriages, my body saw the baby as a threat, an invasion, something was not supposed to be there , per what the doctor said, so instead of my body leaving it alone it attacked the baby like it would a cold. that is when we knew something was wrong, I gained lots of weigh during my last child, why well you need to eat healthy, and eat small meals and lots of them. I was 112 pounds I ate one meal a day. I was up to eating breakfast snack lunch and 2 snacks then dinner and before bed another snack, reason is the baby eats you eat, but my doctor had me on macrobid, its an antibiotic safe for pregnancy, so I would say if you want a child, before you are going there talk with your obgyn, never let that ob out of your sight and if you have any kind of pain, hurting, or something that makes you un sure, call then they are usually open during regular hours and have a closed number also, also the hospital is there too I went 4 times with my 2 year old. so it depends on you, and how you treat your body and the doctors around you and how they treat you and what you tell them remember they don't know unless you say something
There are some excellent books out about raising a child with a chronic disease. Both authored by person with the chronic disease and adults who as children their parent or parents had chronic diseases.
You can find one specifically for those with lupus even. I really urge anyone considering raising a child with lupus to read one by both. There are just going to be days when the roles can get reversed and as most people know that is not a good thing.
I think a lot would depend on prognosis of your lupus..so speak to all your team of lupus doctors including OB-GYN and try to listen to what they have to say openly...hearing what is best for both you and your child. Ask if they expect you to be high risk and possibility about choosing between your life or childs' in last trimester. I sadly...was one of those that had to really be prepared to choose.
So really read the books....they will cover much more than any discussion on here and i found them to be fair, presenting pros and cons of having a child.
I have not read the previous posts. I have lupus and fibro. My mother had lupus and ms. I highly suggest having a strong support for having children. All pregnancies have their weirdnesses. My kidneys began to fail during the first pregnancy, 6 years ago, but we made it through. When I wanted to have my next child, about two years ago, the doctors were very leary due to my acute renal failure ( even though I had not been diagnosed with lupus or fibro, I knew the lupus was coming, I haven’t remembered a pain free day in my life, even back to childhood). I was told that just the pressure alone on the kidneys, let alone the overall strain on my body carrying a child could cause a very “steel magnolias” scenario.
We went ahead anyhow, a couple of bumps, but right before we found out I was pregnant, I got the call that my renal and pancreatic panels came back the cleanest they ever had been!
Unfortunately, I needed more and more help From my in laws as time went on, and this summer, both of our families packed up and headed to one home, and are now cohabitating. I won’t tell you that it’s easy. But it’s a blessing to know that if I need rest or am having a bad day, my children are well cared for in their own home.
Here’s the bad version. My childhood was an experience in hell. My mom slept all day, I was beaten for waking her, I got it if I told her the baby needed something ( mind you I was 8 and he was 3). I had a lot of anger towards my mother, I Mean, A LOT, and if my life hadn’t gone down the same path, I would probably still be holding on to that angst, really, hatred. I pray my children never know that feeling. Ensure that their father is supportive, and sadly, that either his parents or yours would be willing to extend the kindness I have received. You will have times where you feel you have no dignity or sense of adulthood. But for my children’s sake, every minute of it is worth it. They are safe and loved.
I felt good while pregnant, but I warn you miscarriages are common. I had 3 miscarriages, but I have one wonderful son. I took heparin shots twice a day, and low dose aspirin. My first miscarriage was due to blood clots in the babies heart and placenta. I tested negative for the clotting problem, but there was no doubt my first miscarriage was due to the blood clots
My child also was having a hard time growing in utero, and I starting developing signs of toxemia, but he was delivered at 37 weeks and was perfectly healthy. Today he is a teenager.