Does anyone really survive?

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  • CulinaryJen- Hang in there! I know how hard it is to wait for a Lupus test.I'll pray for you. I had to wait thru 3 Lupus tests for my oldest daughter 3 different years in a row. She tested negative for Lupus 3 times, though she had 11 out of 12 classic symptoms of SLA. She is 21 and has MCTD. Mixed Connective Tissue Disease.She started having problems when she was 13. My middle daughter now 14 was born with neo-natal Lupus a head to toe purple rash like discoid Lupus. Which disappeared totally in 3 and 1/2 weeks .She has 3 tiny scars on her right cheek thats all that is left. She had no 'heart block' luckly, it was a really bad labor for both of us. She could not have had Lupus unless I had, had Lupus at the time I was pregnant her. In the past I have tested positive for ANA ( the test they use for SLA).Though they, the doctors don't classify me with SLA but with 3 other autoimmune disease like RA and Sjorgrens. My oldest daughter on the other hand has classic SLA symptoms but tests negative for ANA. Go figure. I have read where this is possible. I'ts a complex thing.Stay positive.... I feel for you! I know it is scary waiting. Make sure your doctors answer all your questions and do your own research and reading on the side. It is still possible to carry children to term with Lupus usually, lots of women have. Contact the 'AARDA' on the net.They have great information! God Bless.

  • Leslie9220--Can you explain a bit more about MCTD? I have had achey joints (hips especially, but sometimes knees and ankles, etc.) off and on probably since I was a teen, and have always wondered what it could be, if anything. It may have nothing at all to do with anything that you had mentioned, but I was just curious!
  • I have only had one miscarriage, before my first child, and I was about 9 weeks along. My husband and I went out to Owatonna, MN to visit Pillsbury Baptist Bible College for a week to see if it was feasible for my husband to go there. While we were out there, we secured housing, filled out paperwork, etc., and decided that we would move out there a month and a half later.

    At the time we went out to visit PBBC, we had not told anyone I was expecting b/c we wanted to wait until I was 3 mos. along, and hopefully past the major risk of miscarriage. On the Wednesday of our week long visit, I started spotting. I called up my mom in upstate NY to tell her for the 1st time that I was expecting, but wondered if I was going to have a miscarriage. She just told me to take it easy and stay off my feet (My mom understood--she had 7 children, but also 4 miscarriages throughout besides). Here I was so far from home, not knowing what was going to happen, and not really knowing anyone there to even confide in. The spotting continued to worsen, and by the time we got in the car for the close to 20 hour or so drive home to upstate NY (that is WITHOUT stopping overnight), I was having bad cramps (which of course I later figured out were actually like contractions). On the advice of my mother, I had put a garbage back on my seat in the car in case I ran into big trouble with leaking. It was in a rest area restroom on the way home that I actually lost the baby. I could feel it come out, and wondered if that was the "end"--had I miscarried? was there no chance for the continuation of the pregnancy? . . . I stood up to look in the toilet and see if I could see what might be my little baby, but the automatic toilet flushed before I could see. (sorry to be so graphic) I still wish to this day I could have seen to give me a sense of closure. I came out bawling and told my husband who was on the phone with his parents, that I had just lost the baby. We got back in the car and drove the rest of the long trip home with me "in pieces" emotionally, and still in terrible pain from the cramping contractions. My husband could not understand how I took the whole thing. . . that made it more difficult that he didn't understand that I just needed to cry for a while and grieve. I was not being a "crybaby". . . I just needed to get it out (I have tears as I am writing this now--I have not thought about this whole thing in a while--the pain lessens, but you never forget!)

    Anyway, the Lord has now given me 3 lovely children thus far, and we hope to have more. (DS Thomas 4 yrs., DD Cassandra 2 1/2 yrs., and DD Candida 8 mos.) I would say going through the miscarriage helps you to comfort others going through the same thing. NO ONE has any idea what it is like unless they have gone through it themselves, not even other women. It has also made me SO MUCH more thankful to the Lord for each successful healthy pregnancy and birth of a child. You certainly don't take God's gift of life for granted after having a miscarriage.
    Job 1:21 ". . .the LORD gave, and the LORD hath taken away; blessed be the name of the LORD."

    Psalm 127:3-5 "Lo, children are an heritage of the LORD: and the fruit of the womb is his reward.
    4 As arrows are in the hand of a mighty man; so are children of the youth.
    5 Happy is the man that hath his quiver full of them:"
  • 64squares, answer about MCTD. My oldest started out with symptoms similar to lupus fevers,soreness and stiffness( she was prone to staph infections and severe reoccuring throats though that may or may not have been related.) Plus plenty of fatigue. A classic butterfly rash. Stomach and digestive problems.
    Ulsers in her mouth. Severe light sensitivity she had to wear dark glasses when outside. Still does. It progressed to a 3 yr. battle with of the inflamation of the iris and soft tissues of the eye. She was under professional eye care. At one time she could not focus with her left eye at all, and the the pupil was permantly dialated for 6 months at a time would subside and get inflammed again. Though eventually that eye calmed down the same thing happened with her right eye though not as severe and luckly not at the same time it hasen't re occured for 3 and 1/2 yrs. no but has left her with permanent light sensitivity in both eyes and she has problems with her left eye. As far as the hip problems go it's way beyond just stiffness and soreness, her hips sometimes dislocate so do her ankles she has to wear high top leather work boots to give her feet and ankles some support.She can sit down at work some so that helps. At work she is a professional framer, she had her EMT-B in CO. And was a First-Responder in H.S. But physically it proved to be too much for her condition at this time. She wants to go to nursing school and be a critical care nurse the ones who work in evacuation settings in helicopters. Even with the medical problems I think she might just make it she is pretty tough.

    Leslie 9220
  • Leslie9220--Thanks for the info.! Wow! That sounds like a lot to have to deal with. Bravo for your daughter to keep aiming high with her goals!! It is good to keep on keeping on for what you really want. I figured my achey joints have always been some minor thing, but now I really KNOW so. Wow! I had never even heard of the MCTD, so thanks for enlightening me.
  • 64 Squares-Thank you for sharing that. I, too, had tears as I read it just as you did while writing. I miscarried my second child 11 years ago on Father's Day. We were visiting family and I started spotting. I called my Dr. from out of state and he told me it was probably nothing but could be a miscarriage. We drove home that night and I was cramping all the way. (31/2 hour drive). Eventually, after getting home, it became so bad we had to go to the emergency room. I remember vividly waiting through the paperwork in horrible pain, fear and deep sadness. By the time I walked the long hall to the room (with people standing all around in the hall), my white shorts were red and I knew it was over. The doctor did a d&c and I remember hearing him say "well, look what we have here". I guess I was too scared to ask him if it was the baby. He didn't say. I remember lying there on the table telling my baby how sorry I was. My husband and 2 yr old son came in the room and we really didn't say anything. The next day my 2yr old would just come up to me at home and want to be held. He just wrapped his arms around me and made no sound..just kind of patted my back with his little arms. Against my dr's wishes (and by happy accident), I was pregnant 4 months later and had a wonderful baby boy. It still hurts to think about the time and it's impossible not to wonder what that child might be like had the pregnancy continued normally but with the short span between pregnancies, I realize I wouldn't have my wonderful Michael had I not miscarried and I can not imagine life without him so that softens the pain. I am sorry for the lack of closure that you had. My heart aches for you. I am happy that you have been so blessed with the family that you have and wish you a wonderful, beautiful future.
  • Mom2twoboyz--Thank you also for sharing. I feel for you also--it is not easy to be in the middle of traveling at a time like that. I also got pregnant for my Thomas 4 months after the miscarriage. By then we had been moved out to MN for a couple months.

    After my miscarriage, I never even went to a hospital or saw a dr. or anything! In some ways, I was glad to not have to be examined, discuss it, etc. My flow just gradually lessened and changed on its own over the course of a couple weeks after my miscarriage, so I could tell it was getting better.

    I had called the dr. office a couple of times after our return home from our trip, but they never got back to me until about 5 days after the fact. By then, I was feeling some better, etc. so they just send to have a pregnancy test done to make sure it came back negative. If it was negative then my pregnancy hormone levels were down, meaning what had needed to come out was already out. The test came back negative, so I never had to see the dr. My mom had to have a d&c with one of her miscarriages and she said it was awful, so I was soo thankful not to have to go through that.

    Enjoy your 2 precious little boys! I will attach a picture of my 3 little ones. (Sorry it's fuzzy.)


  • Hello!

    I had a D & E, and although the procedure itself was not bad, the emotional experience was horrendous. For me, that miscarriage was the worst as I have quietly had my miscarriages at home and then saw the doctor. That time, I had to go to Emergency...I had nurses looking after doctor...then, I had to be put was this MAJOR procedure (at least in my mind), so it made the whole situation more traumatic. In fact, after that, I told my husband: no more pregnancies. But, I didn't keep to that.

    And I too did not tell anyone that I was pregnant the 1st time. So, I waded through that miscarriage on my own. I agree with you, any doctor confirmation may have made the situation worse for me...but now, I think differently. If the baby hadn't come out on its own, it could have worked into a whole new situation. But it didn't, so that's what is important now.

    At least, I have one sparkling face to help me forget the grief!


  • Culinary Jen--
    I agree with you--even though I did not have to have the D&C procedure, I think that it would be worse emotionally, more so than physically. For me, that would have made it even a bigger ordeal. I think I was able to try moving on a bit better without having to go to the hospital, etc., so I was glad that it was not necessary. Not that I could just forget and move on that easily, but it made it easier to not have to leave my house. I would rather suffer in private with those I am close to.

    What a cutie your little guy is--how old is he? When is your due date?

  • Hey, 64!

    My boy will be 3 on Halloween, and I am due on January 6th. So far, this pregnancy has gone well, but I know a lot of people right now that are having trouble.

    1.) Dawn was bedridden the whole pregnancy with placental previa. She did have the baby and the baby is fine.

    2.) Joan went into premature labor 6 weeks before the due date, and her pregnancy was great until then.

    3.) Kenda delivered 3 MONTHS early, and her son is in a neonatal unit now.

    4.) Chito is due in 3 months, but all of a sudden had a racing heartbeat and was hospitalized for 2 days under medication to slow down her heart rate and stop her contractions. Another one with a great pregnancy until then.

    5.) Nancy is due next month and has fibroids, gestational diabetes and placental previa.

    6.) Christen is bedridden because she has had cervical cancer and she found out she was pregnant when she went in for a hysterectomy for endometriosis.

    7.) And the last person I know who is pregnant right now, Michelle. Hers is going well despite she has one son with spina bifida and another that is allergic to everything.

    So, I am comforted in the fact that I am pregnant, but when everyone I know that is pregnant is having trouble (except one), just shows me how you just don't know until the very end.