neonlilies

Its just not fair. Help.

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Quote Originally Posted by neonlilies View Post
Hi, I am new to this site. My mom pointed it out after one of our recent fights and said maybe someone could help me. She has lupus. She was diagnosed about five years ago i guess when i was ten or eleven. We were really close and had probably the best mother daughter relationship ever. Before she was diagnosed i remember her getting sick alot and saying she hurt but hiding it and still being a normal mom. Then afer, things changed. She stopped trying i guess. Then i was forced to grow up fast, sitting at wee hours in the morning with her in the emergency room while the pumped her full of drugs. I became the mother n a way. When i get sick, it doesnt matter, she comes first. When i get hurt, it doesnt matter cause she is always in pain. And this isnt just me thinking of her first, its her thinking of her first. She is so stubborn and demandng. I love helping her but when she is contantly on my back its less like a good deed and more like something i have to do. Our relationship is ruined and sometimes i just want to pack my bags and leave. Especially lately. See, i met this boy about a year ago. And he takes my mind off the stress that lupus has put on my home life. He makes me really smile. But mom doesnt like him. And that puts a toll on both his and my relationship and me and my moms. I think she thinks he is going to take me away from her, but in trying to stop that and push him away, she s pushing me to the end of my rope. I dont want to spend my entire life taking care of the woman who was supose to take care of me. I want to run and express myself and she encourages that, but if i do and she doesnt like it, i get grounded. I cant take much more of the stress and nobody understands me. I havent stopped crying for days. I dont know what to do any more. I need help.
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  1. slim's Avatar
    wow thats some powerful stuff im not sure i have the answer but ill give it a shot. I think reading this will hurt your mom but at the same time will give her an insight of what u have been feeling and hopefully will open a line of communication. I have three daughters one who is a teenager and a son and i hope that they never feel like im a burden. i recently had a conversation with my children that if im not around what i expect from them which is to take care of each other. Life isnt fair and neither is lupus .Excruciating body pain ,migraines, chest pains , edema, depression, hair loss, weight gain, sun n heat sensitivity,skin issues,ect,ect this is only a few of the things we have to deal with. Even i have wanted to give up and im a really tough person and very independent probably too independent which is why i get so much flare ups because im trying to do everything so im not a burden. Their is nothing wrong with what u r feeling because as a child u expect ur parents to take care of u but sometimes its the other way around and thats difficult to deal with. U r mom probably hung in their as long as she can to be normal until she couldnt any more and im sure that was difficult for her not to be able to do what she use to. I think after reading what u wrote your mom will know how u feel and not take u for granted and say thanks for the help because we all are guitly of not saying thank u when we get use to having something done for us. This post actually opened my eyes because maybe some one i love feel the same way u do we get so caught up in are daily struggles that we forget about those around us . No one knows are pain except another lupee so give ur mom a chance dry ur tears dont wait for her to find this take it to her and hash it out u obviously love ur mom or u wouldt have tried and im sure she loves u just as much. Not sure if this helped so ill keep both of u in my payers. good luck slim.




    l
  2. neonlilies's Avatar
    Slim-
    to be honest, i was more venting than anything. So the wording i was using was really harsh. But part of me feels it needed to be said. My mom is very unlike you. She doesnt even do anything. She has one friend who she ignores on a daily basis. I make her waters and i fix her plates when she hurts. I know she has to go through alot but, like i said, since she is always sck, i can never be. She cares and she tells me what to take but if im throwing up and can move, her legs hurt s oi have to get my own cold rags and hers. I have a terrible cold right now and yesterday i was cryng i felt so terrible and she blew it off. I know that mkes me selfish but just onc ei would like t obe able to be sck and to cry for my mommy and her take care of me. Just once. the only time i remember her really caring is when i sprained my ankle and she carried me into the hosital and for the next week got me everything i needed. That was about four years ago. I used to not care. I was ok with it. but one day, i just snapped. and it all becane too much. I maintain a 5.0 gpa, dance team, show choir, helping on my grandpas farm, taking care of my hedgehog, volunteerign for my school and the community and taking care of my mom. A social life is a struggle because most of my free time is spent with her. My boyfriend uts up with that. He lets me get everything else done and is more than happy to get a few hours of me a week. My mom isnt a burden but when there is that few hours and she doesnt let me have them to enjoy myseslf, i feel used. I know that she is miserable but sometimes its like she is dragging me down with her. Your words did help me it helps me know how she feels. Thank you. ~Allie
  3. sue27's Avatar
    Hi neonlilies.

    I'm sorry that you are having such a hard time at the moment with your moms lupus. I have only recently been diagnosed. I am a where that at times my partner and daughter suffer. And that they have to help me at times. Lupus is so unfair at times to the person who has it and there loved ones. Have you considered talking to your doctor to see if they can offer you any help with your mom ?. Or maybe a counsellor that you can talk to. It really sounds like you love you mom very much and seeing her this way is hurting the both of you. I hope you find away to work things out and that things start to get better for you soon.

    Thinking of you
    Sue x
  4. neonlilies's Avatar
    Sue-
    Actually, this site has helped me more than anything else. I have been very aware of all the medical stuff. I can identify every one of my mom's medications and know exactly what kinds of ivs she needs when she goes to the hospital, but i always thought she was making up alot of the pain or her craziness was just her, but reading the things on this site, its all the lupus. I have realized that. And in the week since i have been on this site, our relationship has improved significantly. I owe it to the people here.
    ~Allie
  5. sue27's Avatar
    Hi Allie. I'm glad to hear that there has been some improvement in your relationship with your mom. My partner found found this site for me and we have both found this site very useful. I hope that things will continue to improve and that you and your mom will be able to enjoy being around each other again and be able to share the closeness that you had when you were younger. I also hope that your mom gets some respite soon.

    Sue x
  6. slim's Avatar
    Neonlilies

    hey reading your post now im glad u and ur mom are doing better and that this site has helped you see the different sides of lupus. You have a lot on your plate and the fact that u havent broken down before this says a lot about your strength and character. Hope ur mom knows how lucky she is to have u and vice versa. We all need love and affection so u give her a hug out of the blue and see how u r loved. there is nothing better than a good hug. hug from me to both of you. slim