The last few posts that I have put up, it has been so nice to get such great responses from everyone, I am really grateful...especially because they are questions that I haven't been able to really get answers to/ get support for. This one is a REALLY BIG ONE that I have- as I am young, and really want a family someday, and after being diagnosed, my future is really unknown/ I have lots of questions about whether or not I am still capable of lots of things... especially the more I read about lupus, and people's experiences with it. Lots of stories I have read- people are too tired to parent- or their parenting is limited because of the illness (sunlight), etc... hard to get pregnant, etc. More than anything I want a family, and I think I would rather hear the answer from other people than from books and doctors! What has it been like for anyone here who has a family? Or had one when they were diagnosed? has anyone had a baby since diagnosis?
People with lupus can get pregnant and carry full term Only a few are affected and once known can be managed and brought through a pregnancy successfully.
The Lupus keeps me from being able to spend time and go places with my kids like I used to. I can't be out in the sun a lot so we do things at night instead. Ive learned that if I can't do it one way then theres got to be another way.
Thank you for your response- I really appreciate you sharing your experience with me. There is no way for me to know what this will be like-- and this has all been really overwhelming and scary--it is such a huge fear for me (that I won't be able to have children properly or won't be as good of a mother... I am also epileptic, so I also have fears about that)..., so it is so helpful to learn from other people's experiences.... I really appreciate hearing it- it helps to learn. Thank you.
survivor4ever said:
The Lupus keeps me from being able to spend time and go places with my kids like I used to. I can't be out in the sun a lot so we do things at night instead. Ive learned that if I can't do it one way then theres got to be another way.
Ok. I’m going to give you the story from my view. My symptoms started when I was 22. I was very sick when I got married at 25. Of course I got married for the wrong reasons. They told me I was dying. I married my best friend. Not good for your sex life. With all the drugs I was on, I was considered infertile. So for 3 years I didn’t use birth control. I remember being in the hospital getting X-rays of my abdominal cavity on morphine. I was discharged and took a pregnancy test at 1 am that night. Then I took 7 more. All positive. I went into full remission during my pregnancy. I even toured Italy at 5 months pregnant. The pregnancy was high risk due to my SSA antibodies and I was induced 3 weeks early. My daughter stayed in the nicu for a good while tested for neonatal lupus and kidney problems. I chose to breast feed for a long time. (1.8 years) because it kept me in remission. But the older she gets, the harder it gets. She knows mommy is sick and always tired. I can’t really take her outside. We do a lot of indoor playgrounds. I’m blessed to have a friendly kid. So she’ll find a friend to play with. She has a lot of “play doctor” toys that she uses to “fix mommy.” I don’t let her see me in the hospital often. But she sees my picc line and my hands are bandaged. I don’t shield her from the reality but I struggle to not let her take care of me. She goes to daycare from Monday - Friday from 9-3. If I’m having a good day, I pick her up early. while she’s in daycare, I rest so I have the energy to devote to her. It’s a balancing act. I’m a single mom, but I have an army to raise my kid. I just got discharged from the hospital again and this time has been really hard. So my ex in-laws have stepped up and have her during the week and I’ll take her on the weekend when my mom is home full time to help me.
All this being said, she is my reason for living and despite ( or because) of the obstacles of having a chronic illness, I’m a damn good mom. And when I have my good days, we both have our good days. And on our bad days, we watch Sophia the First and eat popcorn for dinner. Pick your battles. Know your limitations. My daughter is growing up to be a strong, independent, compassionate, loving, and kind human being. It’s harder to be a mom as your sick. It’s harder to keep a marriage together too. Mine fell apart but we’re really good co parents. And as long as our kid is happy and healthy, that’s all that matters. She turned three on October 30th, the day before Halloween and I had to take a break during her party. I couldn’t take her trick or treating. But she saved me a slice of cake and ended up having more fun staying at home handing out the candy rather than going out. Mother is god in the eyes of a child. Sick or not, your child will worship you.
I constantly feel guilty bringing a life into this world knowing I have limitations. Constantly. But that’s on me. She doesn’t know the difference. To her, I’m the perfect mom.
I had a baby six years after my diagnosis, and I had a wonderful pregnancy. My lupus went into remission and everything was wonderful. Now, my daughter is four and we are in the process of being certified to adopt another baby (decided not to go through pregnancy again because of my age). It's tough some days, but kids don't know the difference. She loves me, and takes care of me if I'm in the hospital or in bed (she likes to give me her stuffed monkey). Kids are very adaptable. And it's not my daughter who I worry about -- it's my husband, as he does the bulk of the caretaking. We are in the process of scheduling my afternoon naps, as I get so very tired in the afternoons and evenings, and pretty much hit a wall by 7pm, when most of the caretaking occurs. I'm very worried about him because he's so stressed about carrying the burdens of bringing in a salary, caring for the baby, and taking care of the house. He does a lot. Too much. So, I guess I'd say the kids are easy going when it comes to having a parent with lupus, but you have to make sure that you and your partner are taking care of each other. That's what I find the most challenging.
I have a daughter who is 26, married and is having a child of her own this month and I have my 4 year old. My lupus did not become diagnosed until July with symptoms of RA for the previous two years that have impacted my quality of life. It is definitely different with my little one and I do feel like I have to compromise on our activities due to my illness, but I do not compromise on the amount of love, attention, cuddles, giggles and tickles that transpire between us. I have a wonderful hubby that does pick up some of the slack when I am really down...he took her shopping for a friend's birthday present on Sunday and then took her to the party, as I was out in the sun too long on Saturday and didn't realize it until it was too late. While I know the future is never clear, what I do know about being a mom with a chronic disease is that the things with my first that I had less patient with are not nearly as important now. The child will remember your love, devotion, support and encouragement - I know there will be times that she is disappointed that I can't do everything her friend;s mom's can, but I will be certain to provide her with an ear when she needs to talk, a cuddle when she is sick or feeling sad and encouragement to reach for her dreams.
I have been living with the disease since I was 7 so I’ve done it all while having lupus…dating, marriage, kids, work etc… I was told at 13 that I should consider having my tubes tied because pregnancy and delivery would be so taxing for my body, these same docs also told me I would be in a wheelchair by 18. Hmmmmm, here I am at 43, still walking with 3 boys. My pregnancies were great as everything went into remission. It was actually how I found out that “normal” people don’t hurt everyday. Which made me much more proactive about pain control…lol I was on bed rest during the last trimester of each pregnancy due to sjogren’s more than lupus. I did lose our daughter at 32 weeks, autopsy was inconclusive but the docs think it was heart issues caused by sjs or lupus. Delivery was fine thanks to an epidural. I couldn’t breastfeed the first 48 hours because I had to get a dose of cytoxan within two hours of delivery to keep the lupus at bay. My first two boys 18 and 16 had a great childhood since I was in my 20’s when they were born. My rheumy at that time was awesome and would medicate according to how I felt rather than by what my labs looked like. So I had plenty of energy for them and for the gym etc… After those two, I lost our daughter and then I got hit with premature menopause at 32 and was told my baby days were over. Hmmm, docs were wrong again. I had my youngest when I was 36, despite not having had a cycle for over a year. This pregnancy was difficult. I was in a car accident and really messed up my back but refused x-rays and scans because of the baby. I almost lost him early in the third trimester but got admitted and the contractions stopped. They sent me home on full bed rest, medicated to my eyeballs. Those last three months were very difficult since I couldn’t play with my older boys, wasn’t allowed to drive, cook, clean…nothing My husband was awesome and really stepped up to the plate but I know it was hard on my boys. I tried to have lots of snuggle time, helped with homework, anything I could do while in bed. After he was born I didn’t bounce back the way I had before. My back was a mess from the accident and I was super tired. It took almost a year before I was able to function at close to my previous level. My youngest is 7 now and he has had a very different childhood than his brothers had. I was in two more car accidents, none of them my fault, but they took an enormous toll on my body. No major injuries just the lupus reacting to the stress. Since then I have been in pain 90% of the time. The hardest thing for me is not being able to do stuff with my little guy. He was 2 when my Suburban got totalled by a 17 yo girl running a stopsign, I didn’t have one, came around the curve and bam, broadsided her. She was fine, thank goodness. My little guy was in the car at the time. Had to do the ambulance thing, my back was in excrutiating pain, and I’m trying to keep him from being scared while strapped to a backboard. I’m still trying to get my mojo back from that one. But it was emotionally devastating because I took him to the park to play and he wanted to do the swings, I couldn’t lift him into them. So he’s crying because he wants to swing and I’m crying because I can’t be the mom I want to be. Fortunately a dad saw my struggle and asked if he could help. I almost kissed that man…lol I love my kids and they are totally worth every second of pain and struggle but I really wish my baby didn’t have to ask if I will feel well enough to take him to a friend’s house or if he can have a friend over. It breaks my heart that they have to take my health into account. Everyone reassures me that to him it’s normal and he’ll be fine but it’s not ok by me. That said having kids is definitely doable with lupus. You just have to know your limits and have really good mom friends to help you out when you’re flaring. Sorry for the rambling, good luck, Annemarie
If you do decide to get pregnant you should be in remission & be followed by a high risk Ob Dr. There can be complications with pregnancy in Lupus pt's. I had my son before I was diagnosed although I believe I had Lupus for sometime. My son was born 2 mos premature. I worked throughout my son's childhood. I was tired & had to be careful of the heat & sun. Everything works out. I wouldn't have not gotten pregnant even if I knew I had Lupus. He's a healthy, educated 24 yr old now & it was all worth it.
Lupus has both been a curse, and a blessing to me being a mother. The curse is the grumpiness, the constant headaches, the fibromyalgia that makes hugs hurt. The not being able to walk for long, or the days when all I can do is stay and bed and try not to cry because I feel so defeated.
Blessing and Lupus not words you usually see together right. Yes Its true that we can't alwasy keep up with the kids, and their constant need to be active. It's hard to be out in the sun all day, or walking for hours on end, or to find time to take a break and rest, expecially if you are a mother AND working a full time job.
The blessing comes in the fact that it's caused me to look over everything and save my energy for the things that are truly worth the time. The music recitals, the award ceremonies, listening to my son play me a song on his guitar, or to my daughter sing or show me a song she composed for her flute. It come with seeing just how compassionate my kids can be, and how helpful and understanding they are the more I am open and honest with them. It comes from appreciating those few hours each day where I can just enjoy their company. Every parent loves and appreciates their babies (well most do) but I think for those of us who struggle every day, we find even more pleasure in getting that time with our families.
yes-I wasn't diagnosed before I got pregnant-but they doctor suspected an immune disorder as I was going through pregnancy-and I had a great pregnancy on my kids. Birth was hard. The kids have no problems literally, the older one wears glasses and I watch for signs of any immune disorders. But saying that I didn't get the RA diagnosed , even though looking back I was having the problems) till late 30's and 40- and now I have MCTD-Lupus-which is Mixed Connective Tissue Desease -its all the same dam immune problem - Believe in your inner strength-eat and move in a good way-think in a positive way-and LIVE.. Don't stop your life babe-your young hopefully your husbands background will not have theses issues, if so I adopted my last baby so she is my precious baby ok and you can do that too, there are lots of babies to love out there. lov-LUPUS HATER
I am so grateful for this post Lillian I am in the same boat as you. I am relatively young (31), looking to start a family by 35. I was recently diagnosed and I admit I was saddened bu the thought that pregnancy may be detrimental to my health. Glad its not all doom and gloom.
I will start by telling you it is SO worth the effort. Life is fuller and richer for me as I have watched my Son, now 19 grow into a wise, caring young man. I was not diagnosed till a few years ago but have been suffering with the symptoms for most of my Son’s life. I think the biggest obstacle is the “guilt” that I place on my self for missed school and family events. The fact that he has had to witness me lying in bed moaning from pain and not knowing why at the time . And watching the demise of his parents marriage, not all caused by effects of Lupus but it played a large role. I am now a single Mom and forced to quit a 22 year career as I could not get to work and perform consistently anymore. You have to cherish the good days and prepare for the bad. Now that we know what is plaguing my being it makes things clearer for him and now he can see how I struggle but persevere regardless of this hideous disease. Love, Love, Love and all will be fine I promise you. Lupus is devastating but it cannot take our Love for our children away and that is what they need from us…Love and Suport. Good Luck and savor the moments.
MsAych2 said:
I am so grateful for this post Lillian I am in the same boat as you. I am relatively young (31), looking to start a family by 35. I was recently diagnosed and I admit I was saddened bu the thought that pregnancy may be detrimental to my health. Glad its not all doom and gloom.
HAS ANYONE ELSE NOTICED... All the comments about being in remission while pregnant!!! I also felt the best I ever had for those pregnant months. A "light bulb" moment... Do you suppose HORMONES are part of the Lupus mystery !!
Of course they do. And the baby creating it’s own immune system. I’ve read about a few places trying to replicate the environment of pregnancy. But to no successs so far.
I believe the drop in hormones after the birth of my son triggered Lupus. I've read that hormones play a role in Lupus & low Vit D levels
misunderstoodMom said:
HAS ANYONE ELSE NOTICED... All the comments about being in remission while pregnant!!! I also felt the best I ever had for those pregnant months. A "light bulb" moment... Do you suppose HORMONES are part of the Lupus mystery !!
Sometimes pregnancy can cause a flare. Sometimes remission. I told my mom that if my Hail Mary treatment fails, I’m going to become a surrogate. She was not amused.
Hi!, I myself have grown kids , but have small grands , it can be hard for me at times to have fun with them on day to day, the oldest and the youngest live with me, we play when am not in a lot of pain ! But the oldest tells her brother (which is the youngest)that when grandma can’t play we have to do some arts and crafts at the table! That really make me want to cry sometimes, but she went to the doctor when I was diagniosed , and she has been very helpful since then ! Now the youngest thinks it is play time ALL the time, of course he is only 2years old - and really don’t understand , but he watch his sister, and he try to do small things , then it is back to paying he go!! Take the moment as it come to you, enjoy what you can and don’t forget to rest!..Beverly L.
Thank you everyone for your responses. I have had a horrible flare this week (still really bad today: last two days have been horrendous migraines, so I have been avoiding screens!)-- and so this week I have not had energy to get to the computer as much/ write you all back for your generous and thoughtful replies. It means alot to me that you have all opened your heart and be so open about discussing this sensitive topic- I cannot tell you all how much it has helped me to get an understanding of what everything may be like for me in the future.... since being diagnosed, everything has been so uncertain (which is terrifying, and so hard to live with)... when before, I was a totally atypical planning type person. Thank you all for your comments, I am really grateful. Hope you have a spoon filled day tomorrow. Hugs-
I'm a single parent with lupus & I feel that you can be a great parent ..parenting & lupus can be challenging but it can be done!! You will have to just adjust things to fit in with life & lupus..for example: you may can not go certain places (Chucky Cheeses or your child sporting events) or do certain things (like being an active member in the PTA or dealing with the weather -cold in the winter & hot in the summer) but nevertheless you will be able to have that play date if it's just reading with your child & having a nice slumber party at home in your nice cool house or warm cosey bed. So you can be a GREAT parent & have lupus..If you can fight Lupus you have already shown your bravery!!!!
I went into full remission during my pregnancy. I even toured Italy at 5 months pregnant. The pregnancy was high risk due to my SSA antibodies and I was induced 3 weeks early. My daughter stayed in the nicu for a good while tested for neonatal lupus and kidney problems. I chose to breast feed for a long time. (1.8 years) because it kept me in remission. But the older she gets, the harder it gets. She knows mommy is sick and always tired. I can’t really take her outside. We do a lot of indoor playgrounds. I’m blessed to have a friendly kid. So she’ll find a friend to play with. She has a lot of “play doctor” toys that she uses to “fix mommy.” I don’t let her see me in the hospital often. But she sees my picc line and my hands are bandaged. I don’t shield her from the reality but I struggle to not let her take care of me. She goes to daycare from Monday - Friday from 9-3. If I’m having a good day, I pick her up early. 
She was not amused.