Does anybody understand How I feel.
Lupus - 0.0%
Life - 100.0%

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New Member

Date Joined Jun 2009
Total Posts : 2
   Posted 6/22/2009 2:12 AM (GMT -6)   
I have been living with lupus for about 17 years now and it is pure heck! I have 3 wonderful children and a craby husband.

I am reaching out to some one for help, to see if any one might know how to make a doctor reverse the damage they caused me when they took the right away from me to have any more children due to lupus. about 6 1/2 years ago now, I was told before my 3rd child, That the only doctor that would see me and handle my pregnancy DR. would not take care of me unless I agreed to be fixed after my little one was born, this was the only doctor that would handle me and the complications with the lupus. Boy was I ever Stupid to trust this doctor! I was scared of my baby not getting cared for properly that I agreed hands down when dealing with your child like any woman would who loves there children. My husband and I wanted 4 children but because of this doctor we will not ever have this chance to have anouther child the only way is the envitro because this doctor not only lied to me he cut 3" of my tubes out burned and tied them. I have been feeling like a part of my soul has been taken from me ever since that day, because I found out one month after he fixed me from the doctors @ Stanford hospital that there was no reason in the world why I had to be fixed . Oh my God this hurts I thought the pain of my missing child would go away in time and my 3 children I alredy have would fill this void I have ,but it doesn't. I wanted my 4th child and hate this Doctor for lieing to me about it I tried to talk to him after I found out he lied to me but was told if I did not leave his office he would call the police on me I have never been offerd counciling for this I have wanted my other child so bad that My husband and I have stood out side the abortion clinic begging to pay any of these girls not to get rid of there child Please just sign it over to me and my husband that we would take the child no matter what the problems and no questions asked . I know this might sound crazy but If it had been my own choice maybe It would be better. I still am living with lupus every day I currently am taking Prednisone,Folic Acid, Multi Vitamin, Fish Oil, Multi-Creams for my skin, Singular, Xanax. My Systemic Lupus is currently in remission for over a year now, But my Skin is still really bad i can not be in the sun for I am completely allergic to the sun I can not go out without some heavy protection Like full gauze and sock rapping I 'm sorry My husband told me i need to reach out to some one who might relate to me about this .My husband told me about web site so here I am. Please if some one might know some way that I can get services to get my last child let me know ! I would like to sleep for once @ night with out begging God for my other child, and the strengh to live with this lupus to mayby one day they will find a cure and we all will live like every women and man should Thank You all and God bless you all for listening to me, just really could use some real people who understand how I feel , that would be nice .Thanks and bless you all

*name of Dr removed to protect Healing Well from possible legal threat*

Post Edited By Moderator (AlwaysRosie) : 6/23/2009 6:32:32 PM GMT

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/22/2009 12:06 PM (GMT -6)   
Hi hun, your husband is right you do need to talk to someone. You know Lupus can also cause depression. I'm not saying that what the dr. did was right. It absolutely was not. But as far as undoing the damage I don't think that is going to happen. I think you should get grief counseling. Frankly the way you sound right now even if you could get an adoption going they wouldn't take you until you reconcile your loss.
You know we everyone here has to deal with a loss. Besides what ever we go through personelly with losses we all have to deal with the loss of the person we used to be because of this lousey disease. I noticed you aren't taking an anti depresaant. Many people on here take them. Let's face it living with lupus is deressing from time to time.
I had cancer when I was 26 and had to have a hysterectomy after one child. Fortunately my husband was very supportive. God bless me with the family I had and I am thankful for it. I'm not making light of your problem but so many lupus women can't get pregnant or have several miscarriages. Life is short you have a great family with 3 kids! that is awesome.
 scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
Bear ye one another's burdens
Galatians 6:2 KJV


Angel MJ
Regular Member

Date Joined May 2009
Total Posts : 36
   Posted 6/22/2009 4:43 PM (GMT -6)   
hi lovethekids ... carol said it all! maybe grief counselling might do some good! i guess the hardest part is that it was not your choice and by no means did it sound like an informed decision ... you were pushed into it! BUT you made the right decision for that time and now you are left with the what if's ... i am on the other end of the scale - 33 and no blessings yet ... hubby tries to be supportive (we can adopt and kids arent everything etc - i know it is hard for him as he really does want the pitter patters)
so altho you cannot undo the 'physical damage' try not to do more psychological damage ... time to start taking back your power and move forward best you can ... so you may not have the 4 you wanted but that isn't stopping you love the 3 you have! and maybe going forward there is fostering, adoption and the like!

New Member

Date Joined Jun 2009
Total Posts : 2
   Posted 6/23/2009 2:03 AM (GMT -6)   
sad  Hello Carol &Angel,
             I want to thank you both for your feelings on my situation, and i know your right i do need some help dealing with the heart ach, the pain, and the emptyness that i feel every day. I do love my three children very much with all my heart, they are the greatest, they are my gifts from god. some people say i'm selfish i don"t think i am, i had something very special taken away from me  my ability to choose for my self. yes i have three very special angels already my dream from child hood was to have my perfect family of four children and a loving husband, all thats missing is my fourth little angel,  right now they have been able to keep my systemic lupus in remission to the point the dr.'s took me off most my meds  now the main one is prednisone, they said if we can keep the skin flairs to a min. then right now i could have a very successful pregnancy. now i just have to find a dr to do the invitro without charging me every thing in savings and still put me in debt.  it's sad how a gov. agency like the medi cal system has no problem taking things as important as your rights, and ability to bring a beautiful life in to this world a way from you, but to try and get it back through invitro or adoption they won't pay for and the dr.'s chargh way to much for almost any one to pay. i don't know maby one dayhopefully soon i will be able to get my other angel,at least this time i would go in to it knowing this would be my last so it would'nt be as painful.  and i am taking xanax for depression, and panic primary dr. just added b12 shots temp. to help boost my systema little hope it works. sad                                 THANK YOU FOR LISTENING ,AND TALKING TO ME
                                                                         GOD BLESS


Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 6/23/2009 7:33 PM (GMT -6)   
Sorry to Lovethekids for all your heartache. I had to remove the doctor's name. I know you weren't complaining about "that" doctor, but it could be misunderstand and then HealingWell can end up embroiled in legal issue.

So sorry for your situation.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 6/24/2009 12:19 AM (GMT -6)   
Hi LovetheKids--
I have painful stories from my illness and also lost my organs young due to it, and have been sick for 17 years just gettng a real diagnosis in the last few years. I had a worse thing happen and had to have a medically necessary termination due to some very heavy meds I was on, don't know how I managed to get pregnent as my husbnd was "doublebagging" but it was a horrible loss that I still cannot get over. I was so young and was very frightened, I had not been ill all that much,at least not nythingserious, thenthey gave me a year to live. I would not have carried the child to term, it would not have lived due to the medication. Stopping the mediction would have killed me before I could deliver. Then after I lost my female organs, which had been rendered sterile permanently from the medication anyway and cancer type stuff was starting to show up on tests. I thought I was done with kids but when I was in my late thirties a desire came to me to want another child. I am often glad now that I was not able to make that decision because I am pretty sick now.

One thing I did forget about are grandkids,and they are going to be great, when I get some. I'm ready to fix my sons up with women desperate to get pregnant (just kidding) so that I can have some grandkids. They really need to get on the stick.

I know your kids are probably still young, but they grow so fast. Another option is to try to foster a child, so many children need good foster homes. I know the child would not be your blood, but I have learned that you end up loving them just like they were. This might be a way to see if you might want to adopt. If you still have eggs frozen at the facility or still have your ovaries, you migh be able to do the surrogate thing, if you could find a relative or someone to help you.

But I still think its not about quantity. And perhaps this is God's plan for you, though it may not be your plan for you. My chihuahuas fill my need for babies. They act just like babies, love to be held and they say their great popularity is due to the fact that genetically they are furthest removed from the wolf of all dogs and the most like a human baby. My little dogs are my babies and like to be held all day. They really filled a little empty spot I had. They are great little dogs.

I guess I'm offering all these thoughts because I feel your pain. I can only tell you that perhaps for some reason only God knows, this is the way your family needs to be. Sure the doc was totally messed up,and the whole situation was a mess, like mine. But it happened, to both of us, and we can only go on the best we can.

Oh, also, getting close and being a "favorite aunt" or "favorite mom in the neighborhood" can really help. Sometimes I felt closer to other people's kids, and I'm so honored whenthe come to me. So many kids need love and guidance. My grandparents were my "parents", they really loved me. So things like that happen too.

Well, I wish I could fill that hole somehow for you and takeaway our bad experiences. The worst part of my experience was that the toxic and sterilizing medication I was put on I was recently told I did not need, that I was misdiagnosed, so a child died for that, and I lost my reproductive organs and my health is trashed. All for a mistake. They tell me itis too late to sue. I need to change the subject.

Anyway, much love to you and try not to focus on it so much if you can but try to just enjoy the family you have. Your kids might notice otherwise, and it migh make them feel that they are not enough. It was a really raw deal, for both of us and for Carol, I just try to keep the faith and look forward t grandkids and the opportunity to take care of kids as a volunteer or baby sitter.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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