my daughter

Was dx with peripheral neuropathy. She has had TM transversal mylitis since she was 11 and now this. She looked it up and of course one of the causes was Lupus. She went to the hospital two nights ago with numbness in left arm and then the side of her face went numb. Later her left leg went numb. The dr. did blood work which came back PN. A few months ago my son went to hospital out here for same thing and without blood work or anything because he was dx as bypolar he was dx as having Conversion disorder. She is having a really rough week with it. Her mother in law is in town and her husband is in another country so he isn't there to help her. She has two young children. Trying to teach her oldest son who is 4 how she is feeling she held his arms and told him to try to move them. He told her "mommy I can't." She explained to him that was how her arms felt. Now he lays in bed with her and tells her he will take care of her. She is now talking about putting ropes on her husbands hands and tying - (sp) ( I hate this I can't even spell little words) them to the bed so that she can show him how it feels not to be able to move. It'll be easier for him to understand than the spoon therory which she has tried to explain. I wish she lived here in Ky instead of Calif. so that I could help her. Her in laws all think it is in her head because like so many of us she has done everything from taking care of her family to taking care of his family that lives with them. My son has the mask, it is noticeable when he is inside but when he goes out into the sun his nose and cheeks turn very bright red, he has a lot of flaking around his chin and when he comes in from the sun he sctraches alot around his chest. I've told him that I want him checked for Lupus. He tells me that it's from the water. This is all so hard as a mom to know that my children and my grandchildren will and may suffer with this diease. My son is wiccan and a friend of his cursed the goddess and gods for little things the other night and my son was mad about it. When my son was dx as MMR Mildley Meantally Challenged, I cursed God for it and then asked for forgiveness now with all this I talk to God and ask him to watch over my family but I curse my ansiters for becoming mixed breeds

Thank you so very much. Yes it is hard having her so far away. So far my oldest daughter is doing well. She has not shown any symtoms of anything wrong with her.

I love this forum everyone on here is so nice and understanding.

As of yet my results from my Lupus test have come back normal but I know that it can take awhile for anything to show. With all that two of my three children are going through and my other family members it will just be a matter of time.

Veronica

Veronica - I understand your story. I and now my daughter have lupus. My son is 5 and starting to show some oddities. He originally had neonatal lupus. I hate it when my kids say they worry I'm going to die all the time and feel the need to take care of me. Feel even worse that some day they may also have to worry about their own lives. They are just babies and it is so unfair that they have to grow up too fast. My daughter, age 10 is also bipolar w/schitzophrenic tendencies. My son age 5 is mildly autistic with dysphsia. I worry about them being labeled and not getting treatment, just like they tried to tell me I was "just depressed/stressed" and refused to treat me for years until the Lupus became deadly and finally agreed to test me.

I feel for you because you are a mom who has to watch this in two generations, perhaps three. It can be an overwhelming burden. Your daughter at least has your comfort and support. That means more than anything, I'm sure. I didn't have that from my mom some time ago, now that I do it makes a world of difference. I wish she lived closer too but there really isn't much more that she can do for me. I need to live my own life with or without the disease. The extra help never hurts though.

I had hemipeliga when my daughter was an infant/toddler. I left an abusive husband and was on my own with no support. I remember people looked at and even asked me if I was a drug addict because I was unable to use one side of my body and shook from weakness. There was no compassion from anyone and my family still expected me to take care of everyone else like I always had. It was very unreasonable and selfish on their part. Everyone, including my family and best friends, thought I was faking my illness - even though they watched me struggle like crazy for 8 years. I finally got the diagnosis and they eased off some. There isn't much guilt they can put upon me now, but they are still unreasonable and/or selfish. I just feel like I can point it out now and say no, now that I have a "valid" reason. It is unbelievable that people can act this way, but unfortunately some do.

My mom and I just talked about how it is wierd that I could have something going on with me that is potentially life threatening but still walk around looking and acting okay. It really confuses her is what I got from the conversation. Others say the same thing. Little they realize how many times I have had to make it "look" okay, just to survive, keep a job, keep friends, etc. One can't see inside my head, my heart, my kidney... no one can feel my pain, lack of strength, exhaustion. What do they expect?

I realized I don't have to be mean or angry to stand up for my rights; just consistent. They have no right to demand from me anything that I can't or don't want to give. Would I expect that from them under the same circumstances? Guaranteed I wouldn't. Perhaps suggest this to your daughter. Fair is fair. It has been hard for me to do that over the years. Boundries aren't something I understood well. It does get easier in time and people will learn to live with it and adjust. Those types of people will just have to find someone else to make all their dreams and wishes come true. She has to survive too. It is hard to be sick and think what is fair and not fair when others try to use or abuse you. I hope the in-laws will come around in time. Some never do though, their concern is themselves and their son. Maybe if they realize how their treatment of her will have an adverse affect on their son and grandchildren, they will ease off a bit. No guarantees though. I did it with my parents and it worked some. I did it with his parents and they flat out told me they cared only about their son, not me and not really their grandchild although they love their grandchild. I had to let that go.

Not sure if this helps any. Please know though people do care about you and your family and my prayers go out to you. If your daughter ever wants to talk, feel free to give her my email address: [email protected]. It helps to have friends that share similar plights. Best wishes - Kristin

Veronica, I'm so sorry you and your children have so many difficulties in your lives. What you described about your friend who's son ins going to have surgery is precisely why this forum has become so important to me. We can come here any day and all day and our friends here don't tire of our complaints, our stories, and our questions, and in addition we all understand each other. I've said before that I don't talk about my illnesses too much with my friends and family, and then only when they ask specifically. I've noticed that when people don't understand a disease and it's all you talk about, they slowly disappear. Well, friend, we're not going to disappear, we're not going to suggest that our own problems are better than yours, we're not going to talk down to you as though you were just neurotic because "you don't look sick" and we're going to understand.

So regardless of how hard live is or how much harder it becomes, you have a support group here that cares for you. I'm so glad you're here.

Love,

Pat

You all are so great. I've been reading every word that all of you have written with tears in my eyes because I know that your lives are hard with all the things that you have going on in your bodies and yet what you all have written has touched me so very much.

I am so glad that I have found this sight. I am so blessed to have all of you in my life and my heart.

Veronica

My daughter is doing better, her husband is back in the states. This morning though my daughter was having trouble opening the milk container and her husband was upset with her cause she did finally figure a way of opening. He was mad cause she didn't ask him. LOL.

I am doing better today because I know that she is doing a little better.

Thank you all for your support and help.

Veronica

Wow Veronica, it sounds like you and your family have alot of struggles to get through. I wish for you peace and the best of health that you can have with Lupus. You have came to the right place for love and support, the ladies here are wonderful at dishing it out.

Connie