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Thread: mitrofanoff stoma and pregnancy

  1. #11
    I don't necessarily disagree with anything any of you have said. I am just trying to push Jessie into thinking about the issues, but I guess I am not as blunt as you all are. (Not being nasty about that.) You all have a different relationship with her and a much longer one than I do.

    I think that all of the things that have (and my guess is, will continue to be) said need to be said. I do feel that it is more powerful coming from you all.

    And whether or not we agree with her decision, fortunately or unfortunately, it is her decision.

    Reputable genetics counsellors and alternative fertilization programs (I am not sure if that is a phrase or not) will look at all of the issues.

    CKF

  2. #12
    Senior Member jessie.gray's Avatar
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    Thanks for nothing! I'll say this again:

    SINCE I TOLD ALL OF YOU THAT I DON'T HAVE A CHILD, I HAVE NOT POSTED ANYTHING ABOUT A FAKE CHILD SINCE. EVEN MY FACEBOOK PAGE IS 100% TRUE AND THE PICTURE OF THE BABY ON THERE, PLAYING AT MY HOUSE, IS MY 1 YEAR OLD NEICE, BRIANNA. I HAVE GIVEN MYSELF TO THE LORD AND ALLOWED THE HOLY SPIRIT TO COME INTO MY LIFE, BEEN FORGIVEN BY GOD, AND HAVE NOT DONE ANYTHING THAT HORRIBLE SINCE THEN! I DON'T LIE ANYMORE AND I HAVE FIRENDS AND FAMILY THAT WOULD BE HAPPY TO AGREE WITH THAT NOW. ALL OF THE POSTS YOU READ ON REVIEWS ARE OLD POSTS (if you'd happen to look at the dates on them). THE ONLY POST I WROTE RECENTLY WAS ON A BREAST PUMP I HAD TO USE TO RELIEVE ENGORGEMENT DUE TO BEING ON DOMPERIDONE FOR GASTROPARESIS (a drug that very commonly causes lactation by increasing prolactin levels) AND HAVING BREASTMILK PRODUCTION. LOOK THIS MEDICINE UP AND YOU'LL DISCOVER THIS. ALL MY WISH LISTS ON AMAZON.COM FOR BABY BOOKS AND NAURAL HEALTH BOOKS ARE FOR A NATURAL HEALTH SHOP MY FIRENDS AND I PLAN ON OPENING IN A YEAR. THEY ARE JUST LISTS OF POSSIBLE BOOKS WE WANT TO OFFER.
    I HAVE HAD COUNCELING SINCE LYING ABOUT HAVING A CHILD AND ALSO HAD GENETIC TESTING DONE. THE GENETIC TESTING RESULTS SHOWED THAT I HAVE A SLIM CHANCE OF PASSING SPASTIC PARAPARESIS DOWN TO A FUTURE CHILD, SINCE NO ONE ELSE IN MY FAMILY HAS IT EXCEPT ME! BECAUSE NO ONE ELSE IN MY FAMILY (imediate or long range) HAS SPASTIC PARAPARESIS, THE DOCTORS EVEN TOOK THE "HEREDITARY" PART OFF THE DIAGNOSIS IN MY CHARTS LAST OCTOBER.
    I HAVE ALSO SEEN ALL OF MY DOCTORS AND ALL OF THEM SAID THAT THERE SHOULD BE NO REASON WHY I CAN'T HAVE A CHILD SAFELY. MANY WOMEN WHO HAVE OSTOMIES HAVE HAD CHILDREN NO PROBLEM, I DON'T HAVE KIDNEY REFLUX ANYMORE, I DON'T HAVE TO TAKE LONG-TERM ANTIBIOTICS ANYMORE, I AM OFF OF 7 OF THE MEDICINE I USED TO TAKE (now I only take 4 and one is as needed), I AM ABLE TO WALK NOW WITH A ROLLING WALKER INDOORS, I HAVE LOST WEIGHT, I ONLY USE THE FEEDING TUBE NOW TO MEDICINES (not formula), AND MY NEUROLOGIDST TOLD ME THAT THE "DYSREFLEXIA" SYMPTOMS I WAS FEELING WERE NOT THAT AT ALL. IT TURNS OUT THEY WERE JUST NERVE/MUSCLE REACTIONS TO AN OVERLY-FULL BLADDER (this is when I'd get those symptoms most often). HE TOLD ME TO EMPTY MY BLADDER MORE OFTEN AND IT HAS COMPLETELY ELIMATED THESE SYMPTOMS.

    I SERIOUSLY WISH ALL OF YOU ON THIS SITE WOULD FORGET THE PAST!

    All I asked were some simple questions that I couldn't find answers for online. The least you all could have done is answered them nicely.

    Jessie

  3. #13
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    maybe the mobilewomen site would have more info regarding this kind of stuff.
    "Smells like death in a bucket of chicken!"
    http://www.elportavoz.com/

  4. #14
    People don't forget a past as bizarre as yours. You seem to think you told a little white lie. Not. You created an entire fictional world with precious little girls that exclaim "I pee just like Mommy!" That part is your affair. The part where you chose to suck us all into it is where it became our problem. Since you had spread your little internal movie over the whole internet, a stranger came to tell us you were bogus. I wonder what you did to put her on the alert?

    I wouldn't feel right sitting silently by, knowing you plan to pass on a hereditary disease that paralyzes people. I'd feel less right if nobody made it clear that you aren't right in the head. You really need help. You don't need children, you need help!

    Again, this is b/c you involved us in your mess. I was made privy to your fantasies of small children that pee just like Mommy, and your delight in that scenario. That. Ain't. Normal. Your fictional daughter loves her AFO too, also just like Mommy. In Normal World, a mother's heart breaks when her child is condemned to catheters and AFO's. You made quite a point of raving about a particular breast pump. I'm sure it is wonderful. You also made a point of informing us that your eldest was still nursing at 2 1/2. That's wonderful too.

    But the reason you shared that is that your fictional youngest was facing mitrofanoff surgery. Just like Mommy. Share the pain.

    It is some sort of Munchausen by proxy by internet by imagination. I doubt the condition has a name, actually, it is that weird.

    I'm not judging you until you start passing the pain to real children. I'd like to see a lot more counseling, genetic and otherwise. I'm not sure I believe the hereditary part of your disease conveniently disappeared-that's between you and your doctors.

    Your daughters might be boys. They won't always be 2 1/2. They won't always be delighted to pee and walk like Mommy. The day will come they will hate you for involving them, real humans, in your breast-feeding and cloth diapering fantasy. Have you addressed any of these issues? Because your fictional world is so carved in stone, I'm scared what might happen if you meet some actual reality. There is nothing more real than parenting.

    And the fact that you hope to do it alone is even more frightening. I fear you aren't dealing w/ the practicalities of real life at all, when I hear such a plan.

  5. #15
    Emi went through 2 pregnancies with a mitro I believe. The uro that did my surgery said to avoid a C section if I could but if I needed one he wanted to be there for it. Luckily I'm satisfied with just buying plants/flowers and dreaming of puppy dogs.
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

  6. #16
    My doc asked if I planned on having children because he did not recommend being pregnant while having a mitro stoma.
    Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

  7. #17
    Jessie, Since I found you again when I joined C/C, I have wanted to praise you on another topic. Your vocabulary and writing style have vastly improved. At that time you were attending your first semester in college with your sister as she drove you. Even then you wrote of a boyfriend to be the 'daddy'. I had to ask if greyjesse and jesse.grey were one and the same. The difference shows you learned a lot. Put your obcessions toward a degree or learning a hobby not involving babies. Congratulations.
    Last edited by dash; 05-27-2010 at 08:44 PM.

  8. #18
    I know I am not the right person to tell you this but please think about what you are doing. I have been a single mother for more than 20 years for 3 children and happily all of them are AB.

    I can't even see what I would have done if I had a disable child, I don't think I could have made it alone. I am not able to be a caregiver for another paralyzed person, I had enough with myself and my AB children and I am a low, incomplete para. Babies are growing and they are getting big and heavy, my smallest is 13 years old, he is both taller and more heavy than me. How could I care for him? 28 years ago I had my first child and when he was eight month old, I couldn't lift him from the floor anymore and 28 years ago I was walking quite good and could do a lot more things than I can today. But that time I had a husband who could help me.

    But he was starting to walk when he was one year old and things were easier. If he had been disable how could I have carried him when he got older, I promise you, I can't lift him today when he is 28 years old and 80 kg. I can't lift my 13 year old either. It would have been impossible for me to take care of him and he had to live with his father. It is hard enough to be a dis, single mother with an AB child and you have a good chance to get a child you have to be a caregiver for and you have plans to get the child without a father who could help you.

    Everybody can get divoreced and everybody can get a dis child but to plan to be a dis, single mother with a big possibility to get a disable child is craziness. You don't know what you are doing.
    TH 12, 43 years post

  9. #19
    Senior Member jessie.gray's Avatar
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    Quote Originally Posted by betheny View Post
    People don't forget a past as bizarre as yours. You seem to think you told a little white lie. Not. You created an entire fictional world with precious little girls that exclaim "I pee just like Mommy!" That part is your affair. The part where you chose to suck us all into it is where it became our problem. Since you had spread your little internal movie over the whole internet, a stranger came to tell us you were bogus. I wonder what you did to put her on the alert?

    I wouldn't feel right sitting silently by, knowing you plan to pass on a hereditary disease that paralyzes people. I'd feel less right if nobody made it clear that you aren't right in the head. You really need help. You don't need children, you need help!

    Again, this is b/c you involved us in your mess. I was made privy to your fantasies of small children that pee just like Mommy, and your delight in that scenario. That. Ain't. Normal. Your fictional daughter loves her AFO too, also just like Mommy. In Normal World, a mother's heart breaks when her child is condemned to catheters and AFO's. You made quite a point of raving about a particular breast pump. I'm sure it is wonderful. You also made a point of informing us that your eldest was still nursing at 2 1/2. That's wonderful too.

    But the reason you shared that is that your fictional youngest was facing mitrofanoff surgery. Just like Mommy. Share the pain.

    It is some sort of Munchausen by proxy by internet by imagination. I doubt the condition has a name, actually, it is that weird.

    I'm not judging you until you start passing the pain to real children. I'd like to see a lot more counseling, genetic and otherwise. I'm not sure I believe the hereditary part of your disease conveniently disappeared-that's between you and your doctors.

    Your daughters might be boys. They won't always be 2 1/2. They won't always be delighted to pee and walk like Mommy. The day will come they will hate you for involving them, real humans, in your breast-feeding and cloth diapering fantasy. Have you addressed any of these issues? Because your fictional world is so carved in stone, I'm scared what might happen if you meet some actual reality. There is nothing more real than parenting.

    And the fact that you hope to do it alone is even more frightening. I fear you aren't dealing w/ the practicalities of real life at all, when I hear such a plan.
    Okay, you are not listening to me at all! The reason that lady from the other site I was on told you all of the lying I did was because I finally had had enough of living that lie and TOLD THE TRUTH!!!!! I decided enough was enough and wanted to end all of that lying. Again, SINCE THEN I HAVE NOT LIED AT ALL, IN REAL LIFE AND ONLINE!!!!! If you have ever watched the show "The Way of the Master" on Daystar (with Kirk Cameron and Ray Comfort), you will know that it is a sin to lie, so I don't lie anymore now that I have given my life to the Lord and allowed the Holy Spirit to enter my life. I have moved on and am living a new life, and have no plans to go back to the old life.

    I just got off the phone with my mother and she told me to tell all of you, "Believe what you want, but we have medical records that prove I had counceling, genetic testing, and that the doctors don't believe that my disorder is hereditary to the sense that it would be passed on to another child". Besides, according to my neurologist, both the MOM and the DAD have to have the gene to pass on spastic paraparesis. If only 1 of the two has the gene, it can't be passed on. That's what makes it so rare, according to him. And my neurologist is a well-known doctor in Western WA and has had over 30 years experience in neurology.
    I am extremely healthy now, have no plans for future surgery, and my doctors are thrilled that I am walking now. I am also one of the few that is trying to GET OFF of Social Security Disability and live a normal life. I am getting sick of living off the government and have been encouraged by my case worker and worksource social worker to go back to college to get a degree. This way, I will have a job eventually. Even Social Security is helping me with this.
    My mom and I have been helping my sister take care of her 1 year old daughter since my sisters boyfriend got arrested for abuse (and my sis had to move back in with my parents), so I know how it would be taking care of an infant and toddler. I take care of my neice 3 times a week and have had no problems so far, even when Bri is crying constantly or won't take a nap. We get through it just fine.

    Now, I may have a husband by the time I graduate from college and I may not, but that won't stop me from fulfilling my dream of raising a child, wheather it comes from me or through adoption. Right now, my concentration is on college. I just wanted to ask those questions, so I'd know for later on.

    Thank you for the two people who ACUTALLY replied to my post and answered my questions without harassing me.

    God Bless You

    Jessie

  10. #20
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    Quote Originally Posted by jessie.gray View Post
    Okay, you are not listening to me at all! The reason that lady from the other site I was on told you all of the lying I did was because I finally had had enough of living that lie and TOLD THE TRUTH!!!!! I decided enough was enough and wanted to end all of that lying. Again, SINCE THEN I HAVE NOT LIED AT ALL, IN REAL LIFE AND ONLINE!!!!! If you have ever watched the show "The Way of the Master" on Daystar (with Kirk Cameron and Ray Comfort), you will know that it is a sin to lie, so I don't lie anymore now that I have given my life to the Lord and allowed the Holy Spirit to enter my life. I have moved on and am living a new life, and have no plans to go back to the old life.

    I just got off the phone with my mother and she told me to tell all of you, "Believe what you want, but we have medical records that prove I had counceling, genetic testing, and that the doctors don't believe that my disorder is hereditary to the sense that it would be passed on to another child". Besides, according to my neurologist, both the MOM and the DAD have to have the gene to pass on spastic paraparesis. If only 1 of the two has the gene, it can't be passed on. That's what makes it so rare, according to him. And my neurologist is a well-known doctor in Western WA and has had over 30 years experience in neurology.
    I am extremely healthy now, have no plans for future surgery, and my doctors are thrilled that I am walking now. I am also one of the few that is trying to GET OFF of Social Security Disability and live a normal life. I am getting sick of living off the government and have been encouraged by my case worker and worksource social worker to go back to college to get a degree. This way, I will have a job eventually. Even Social Security is helping me with this.
    My mom and I have been helping my sister take care of her 1 year old daughter since my sisters boyfriend got arrested for abuse (and my sis had to move back in with my parents), so I know how it would be taking care of an infant and toddler. I take care of my neice 3 times a week and have had no problems so far, even when Bri is crying constantly or won't take a nap. We get through it just fine.

    Now, I may have a husband by the time I graduate from college and I may not, but that won't stop me from fulfilling my dream of raising a child, wheather it comes from me or through adoption. Right now, my concentration is on college. I just wanted to ask those questions, so I'd know for later on.

    Thank you for the two people who ACUTALLY replied to my post and answered my questions without harassing me.

    God Bless You

    Jessie
    this is all commendable! i really think u should reconsider pregnancy. this is just my personal view cuz i wouldnt go thru that for myself as it is so hard on the body (i have a mitro but even if i got a go ahead i wouldnt do it). keep working on urself, achieve that goal of saying "screw u" to social security and save save save ur monies when u work to afford a child. keep going on that path and if u say ur past is truly behind u then all the better. gl to u.
    "Smells like death in a bucket of chicken!"
    http://www.elportavoz.com/

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