Introduction

[FerrariAngel]

Hello, I was just wanting to talk to any other potential lupus mommies. I'm 24 (25 in May) been married 2 years and have been thinking about starting a family. My husband and I have gotten pregnant and miscarried twice. We are starting to wonder if my body is up to it...and if when having kids it'll be worth it b/c I'll be so sick and won't be able to manage it.

I need some other women's examples and to know what they've been through. I'm tired of feeling so alone in this!

[pnutts]

Hi FerrariAngel,

Do you have rheumatologist, and ObGYN? I had to clear it with both of them first before I even thought about trying to get pregnant. Once they said everything looked good we tried, and tried and tried. It took us two year to get pg with our first daughter. The pg was great I was monitored by three dr. My Rheumy, my regulare obgyn and A Maternal Fetal l dr. We have a healthy 3 year old now. I have also another pg since then and she is a healthy 5 month old.

some days are tougher then others but things are pretty under control at this point. I am having kidney involement since this last pg but I'm still feeling pretty good.

It is possible to have children but I would get everyone on board before even trying. JMO.

good luck,
Cath

[Babybelle]

Hi Angel

I have also just been given to go ahead to try and start for a family, will be 32 this year. I only started back on plaquenil in Oct, after not taking it in about 8 or 9 years, and since I started again, I have felt great. I was on NSAIDS for over 10 years, so I started weaning myself off them about 3 weeks ago, the first week, I just took a tablet every 2 day, now I have just stopped. I am slightly worried about coming off the plaquenil too quickly so I am currently just taking one every second day, or if I feel ok, and try and leave it until the 3rd day. My rheumy, said I have to be off all tablets for 6 weeks, before we try to concieve (not sure if its just to get it out of my system, as I came off the pill then aswell). Anwyay, I have another 3 or so weeks to go, before we start!

Like you I also worry that I won't cope, will my body be up to it, but I guess I don't know until I try!

I wish you all the very best

x style_emoticons/<#EMO_DIR#>/smile.gif

[beverley jayne]

i,m 26 and have 2 children.I had my first when i was 17. They r the best thing that have happened to me,but it is hard,but well worth it.

[FerrariAngel]

I have a rheumy, a ob/gyn, and a reproductive endocronologist. They gave me the all clear, but I'm not sure what to do. Here's a little about me (DH=dear husband) (it is a vent I wrote on another board, figured you'd all understand a lil more from this style_emoticons/<#EMO_DIR#>/smile.gif

DH and I have been having some serious talks lately about kids and our life and where we are going. The part that sucks is I don't think either of us really know. He really worries about my health and sees me deteriorating gradually. He said "I don't see you as disabled, but I know you need special care and things to make you be able to endure each day"....I just wanted to sob! He started crying when he said "I know I'd be a good dad, but I don't want to be if that risks making you sicker or losing you"...I just lost it right there....because I feel the same way. I can't seem to explain to people the bone tired exhaustion and pain I go through...because as they say...I look fine. I work everyday...I'm slower than normal...and I run out of energy. DH suggested to me that maybe working was too hard on my health and I started crying b/c he might be right, but I refuse to quit...I love my job...I hate my body. I've always had this internal struggle...my mind/spirit is young and energetic, my body is old and decrepid....I've always fought to let my mind/spirit win...but I feel like I'm losing the battle...I'm only 24...and my body has already controlled my life.

Each pregnancy has been hard on my body...even though I can't even make my way out of the first trimester. I am scared to figure out what a full term pregnancy will do to my body. Not including all of the medications that I'll have to be on. I've been having severe chest pains and the dr thought it was an inflammation of the lining of my heart and had me do a CT scan...thank God it was only the lining of my lungs that are inflamed (pleurisy). I truly wonder if I'd survive a pregnancy...I don't feel my lupus dr takes me seriously enough and b/c I'm so young and no "serious" organs other than my lungs are involved they think I'll be ok...but why do I feel so ######ty then?

Beyond just the pregnancy...how would I take care of a child? How would I carry a child when I can't walk?? Or how about how would I manage my house, my child, my life, and my marriage if I can't even manage myself!? The other day I was so in pain DH had to carry me down the stairs to my bed...and I passed out in bed. Then the next day he helped me to the couch and I layed down all day....slept all day....til 3 PM! Then I forced myself up so I could at least go out to dinner....I could barely talk...I hurt so badly. As I layed there DH cleaned the house did laundry and the bathrooms and I thought...I should be helping him...but I can't move. How am I going to have kids?? I can't be an evil wife and selfish wife and have him become not only the sole bread winner, but when he gets home I should expect him to do everything I was going to do in the first place, but can't? I don't know...tha'ts just not fair of me to do to him...he'll grow to resent me and hate me b/c I'm an invalid at times.

Oh well...I better go....I just wish that someone else could tell me "you're going to have kids" or "you're never going to have kids" so I didn't have to make this type of decision. Then again...maybe the m/c's were my sign and I just didn't figure it out?

Sorry so long....

[nidean847]

Greetings!!!!

Had three miss-carriages also
I have two and started my family early, I and my husband were 18. Had Alicia when I was 18 and Devin I was 27
Both were high-risk even though I wasn't yet dx'd until I was 22.
When you have a chronic illness such as SLE, children are such a blessing and yes it gets hard during flares but they are wonderful........I do feel sad that their mom(me) is going through a 'rough patch' but all-and-all...........I LOVE THEM.

Make sure you talk with your rheumy and find a good OB/GYN that specialty is high-risk.
I was on Imuran (IV) after my son(second birth) after his birth and a high dose of pred .....so you need good doc's in your corner to explain to you what can happen to you/or your unborn child.....not trying to scare you but it's so important to educate yourself and have docs that will educate you and your hubby too.

It's even great that you're thinking about it!!!!!

Nikki

[beauty]

hello....


I have been there ...to start, I was 25 with my first preg. and at 24 weeks was put in the hopital.....in ICU for a month ...told baby wasn't growing...stopped growing and she probably wouldn't make it ....and if she did she could have problems....and if I had he any time soon they won't even try to save her....they didn't have machines small enough....I was having chest pain...short breath and very high blood pressure....had toxemia....they ran a lot of test ....and told me i might have lupus....didn't even know then what it was ...just that it was something a girl here died with at 17.......from heart trouble.....so, many days later and alot of chest pain and a month in the hospital.....they had to take my daughter ---Destiny---.... she wasn't getting enogh blood and air...kinda thing....so they had to put me a sleep and b/c she was ao small they cut my belly side to side....like most ...but when they got inside they cut the other way....so it wouldn't stress out the baby.....ran out of the room with her past my hubby and family busting into another room to try and get her stable......they got her stable and took her to another hospital....RILEY....they woke me up showed her to me....and i remember reaching my hand in there....and she was so small could reach her....then they took her to riley.......she was 1 lb....5 oz......I sent my family over there....and mannnnnyyy hours later like 7 hours hubby came back with a picture of her...took that long to get her and everything to her hooked up.....they won't let me see her b/c of surgery...they said the next day........so the next day i got to see her....very tiny...her whole hand took the tip of my pointer....she had everything finger nails..hair...eye lashes ...she was just small and needed to grow...............she was doing very well...with in two day was of a vent.....and soon had started breathing on her own...at first I knew there was a good chance to lose her.....but after 7 days or so ....one dr. told me "you'll bring home a bad..." thats when I let my guard down....And she got a infection prem. baby get with in 12-17 after born called---NEC...they didn't catch it in time....she had surgery .....had to have 1/2 of each intestons removed......she was so sick.....they had to bring surgery...up to her room..........and after that sh e got worse and worse....she swelled the size of a normal baby......was black and blue.....I couldn't even touch her hands was scared they would pop....
Dr. told us....nothing left they can do ...her kidneys shut down....I remember before that like one dr. telling 10 diff. peopele none stop what to do....one was controling her heart ...another was sugar.....blood pressure...and so on.....was awfull........I asked the dr. if there was nothing left to do? he said no tried every thing....and if we didn't pull her of the machines she would go on her own.....she lived 17 days the last few days bad...I stayed up there with her.....after she passed....they took us to a room....and wanted us to hold her.....I thought your nuts....Not how I want to remember her.....everyone else held her ...and they did talk me into it ...was very hard....am glad now that I did.....the nurse...asked if I wanted pictures taken....and I said no....well she took them any way ....and said if you don't want them.....trash them....which now i'm glad I have them.....a lot of ppl don't realize what happens when you lose a baby....think they just take it away...so....any way.....after that my chest pain got worse....couldn't get out of bed....only baths and bathroom.....very high blood pressure ...kidney problems....get out of breath easy....after 3 diff. hopitals...and all of them telling me i'm nuts....and it's all cause I lost the baby.....after 5 months and me thinking i'm going to die....they don't have a clue whats wrong....and many meds......my family dr. said your heart rate is veryyy high ...like your running a race none stop.....lol....been trying to tell everyone that!!!!!! sent me to have a echo gram....and my heart was sooo enlarged they didn't know how I was walking....duhhh I wasn't!!!!!!!!! they did a EKG before but it showed nothing ...that heart dr. said "your to young for heart problem".......My O.B dr. told me I had antiphopholipids......have you heard of that???????If not be checked....big cause for mis. in preg.....just a blood test ....but see a good dr....was told if I got preg. again I could die....have to abort to save me.....or kidney transplant.....or heart failure again....yuks......but after a yr I wanted to try ...went and seen all the drs...none was happy about it...but my body had gotten better.....SEE A HIGH RISK DR. YOU TRUST.....she started me on plaquenil.....shots of blood thinner in the belly ....2 a day for 9 months...and b/a.....had many ultersounds.....and at 28 weeks was put on bed rest ....at home....till 36 wks....was in the hopital a few night before that in and out....had a healthy baby girl 5 lb 12......that night ...broke out in hives........yuk.....think that was lupus.....but any way .....after she turned two ...I wanted 1 more....oh boy...that was a big fight with hubby.........lol.....but guess who won....I now also have a boy turned 1 Dec. 22, 2006....things went good through preg.....started meds. before preg....o.b watched me very close....worked up till when I had him......knew things was too good to be true....lol.......after two weeks I ended up in a wheel chair......couldn't walk....bad pain in one leg....had to be carried to a car to get to the hospital.....and they sent me home....lol....had to call my o.b and tell her something was wrong...could even lift my leg.....after 3 days in the hospital there........and other drs. thinking I was nuts.....MRI showed a hematoma.......blood leaking in my back....on my neveres and muscles..........talk about pain....lol....was in a wheelchair for a month....and now i'm ok....so....sorry so long ....but out of my 3 they was all diff......but I wouldn't change it for nothing....now sometimes I look back and think how did i get through that ....crazy stuff....but I couldn't go my whole life wonder what if I did try with the right meds....my first preg.....I was on no meds....until 26 weeks was too late then.......I had to know....the dr. told me all the risk for me and the baby.......And this is how i looked at it....I could get just as sick not getting preg.... from APS, or Lupus......and something can be wrong with anyones baby....so....it all about who your are inside and how much you want a child....and I do know with my third....my dr. told me if your going to try ...your not going to get any healthier .....I would rather live a short life and be happy.....and do things I want to do.....then a long one and not be happy.......you could get in your car tom. and have a wreck.......I think when it your turn to go ....it's your turn....wether its preg. or wreck or natural.....speaking of....my brother passed away at 32 yrs....when I was 6 months preg with my last baby ....thought for sure I was going to lose the baby........I love my kids ....and would die for them....yes, there some days i think ....what was i thinking....it is hard....but the joy...and one day they will understand livinng with lupus....and I wasn't even confimed lupus till 5 yrs after my first baby.......but just get all your health check with a good dr....and find a lupus dr. you like.....are you seeing a blood dr.....? Most teaching hospital are the best...that where all my dr.s are.....and btw....when i was in the hospital i was 25 with my first .....my hubby waas great....your married for better or worse......and the worse can hit you when ever......get check for Antiphospholipids......look it up on here ....it close too lupus....lupus is like its parents...any question.....yell at me....and I also have mess. if you want that
good luck......sorry was writting fast and didn't re read....so let me know if I lost ya
carla

[Anchoress]

((((((beauty)))))))

[LostSpyrit]

Well here's my story, I had my daughter at 17 year old, the only thing that really went wrong was I went into toxemia a week before she was born...my bp spiked pretty bad in the hospital but all went well after 13 hours of labor and my lil girl was born a whopping 8 lbs 11 ounces... style_emoticons/<#EMO_DIR#>/biggrin.gif

I have had 3 miscarriages since then and now am currently 7 weeks pregnant at the age of 23 years. I have checked things out with my doctors and they say I should be alright for this one as well as long as I follow all of their instructions and watch myself very closely for any signs of a flare. Yes it has been hard being a mom while also being sick, I'm amazed at the strength in my daughter because she has pretty much understood what to do when I'm sick since the age of 1 year. When she knows that I'm having a flare and can't do much she sits in bed with me and reads stories or just cuddles on the couch. If it gets to the point where I can't move that well she will actually go and get me everything that I need without me having to ask and she becomes very well behaved as well. I can't say this will happen with every child but as long as you explain things the way they can understand things should go fairly well. Children are a blessing and definately make life worth living (even during their temper tantrums) Good luck and hope all goes well for you.

LostSpyrit

[FerrariAngel]

Thank you so much for your responses. I've been trying to get on the site for a while but it hasn't let me on for days! I thought it was me....but now I'm back.

I know I want a child...I think I'm realizing it more and more. I'm scared...and it will be hard....but I think I've decided this (and maybe my husband will agree too)...if I lose one more...that's it ...we're done.

Kids are great...but I don't want to leave my children too early and I don't want my husband to watch me die first.

Sad and scary that we have to think that way.

Lupus sucks style_emoticons/<#EMO_DIR#>/smile.gif