Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
I'm not sure what to even say this morning. I don't usually come into the Lupus room or whatever much because I've been a very worn out carrier. I've mentioned to many that my younger daughter was diagnosed with severe life-threatening lupus at age 12.
Now, after 12 years and 4 mini-strokes, anemias, and too much to talk about, they want to consider putting my daughter on coumadin for Antiphospholipid antibodies with livedo reticularis as one sign of that disorder. She was diagnosed out of the blue with severe systemic lupus with Class III kidney disease. She has been abandoned for a long time by her old friends who have gone on to other things, and left her behind, except for a couple. Even they live out of town, and so she has nobody coming around. At 12 years of age, to get this very bad diagnosis is the absolute pits. I feel I may have the gene that predisposed her to this horrible crap and that doesn't make me feel good at all. But I've carried on, and still try, but am aging. When I'm gone, she will still I pray have her mother. But my role will be gone for whatever it's been worth, which seems mostly worthless except to pay the bills barely and use up all our savings.
Life sucks, that's all I know. I wish I had a magic want to tell you all what I've seen and know. We all read a lot, and yet seem to be spinning our wheels in some cases.
My wife suffered a few years of really bad depression, and I've been mostly angry as hell about a lot of things ranging all over the place. So this post will mean nothing to you. I'm just venting I suppose. I cuss, and just want to kill a lot of people who don't give a damned, but can't do that (yet) because it would only hurt my family. God, it's very frustrating when you feel so helpless. My relations with my wife are more like brother and sister than husband and wife for the past 12 years now. It affected us in many ways.
No two cases of lupus are alike. So you can't always compare with each other. My wife has had a lot of medical problem since, herself. So it's been Hell on earth as best I can describe it. I just don't know what else to say. Best wishes is about the most I can muster at the moment. I'm very tired.
Now, after 12 years and 4 mini-strokes, anemias, and too much to talk about, they want to consider putting my daughter on coumadin for Antiphospholipid antibodies with livedo reticularis as one sign of that disorder. She was diagnosed out of the blue with severe systemic lupus with Class III kidney disease. She has been abandoned for a long time by her old friends who have gone on to other things, and left her behind, except for a couple. Even they live out of town, and so she has nobody coming around. At 12 years of age, to get this very bad diagnosis is the absolute pits. I feel I may have the gene that predisposed her to this horrible crap and that doesn't make me feel good at all. But I've carried on, and still try, but am aging. When I'm gone, she will still I pray have her mother. But my role will be gone for whatever it's been worth, which seems mostly worthless except to pay the bills barely and use up all our savings.
Life sucks, that's all I know. I wish I had a magic want to tell you all what I've seen and know. We all read a lot, and yet seem to be spinning our wheels in some cases.
My wife suffered a few years of really bad depression, and I've been mostly angry as hell about a lot of things ranging all over the place. So this post will mean nothing to you. I'm just venting I suppose. I cuss, and just want to kill a lot of people who don't give a damned, but can't do that (yet) because it would only hurt my family. God, it's very frustrating when you feel so helpless. My relations with my wife are more like brother and sister than husband and wife for the past 12 years now. It affected us in many ways.
No two cases of lupus are alike. So you can't always compare with each other. My wife has had a lot of medical problem since, herself. So it's been Hell on earth as best I can describe it. I just don't know what else to say. Best wishes is about the most I can muster at the moment. I'm very tired.
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it is like having toothache all over my body - worst ever. Did way too much on sat night (dancing!) and now I am paying the price for having fun for a change!brain scan result was unclear so repeating it on 27th plus a spinal cord scan which unfortunately will delay my rheumatology appointment even more.I wish someone would just knock me out right now.
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
I have been on coumadin fort 7 years.It is not all that bad. I have to watch what I eat but I have done that all my life because of the diabetes on Dad's side. Glad to say that paid off I am still not diabetic.
Do not hammer yourself with guilt. No one knows why some get lupus and others do not. No one in my family on either side has it, only me. Only the Good Lord knows why your girl has it now.
Getting depressed is a normal reaction however you may want to look into a local support group for parents with chronicly ill children. It may sound trite but if you can voice some of your negative feelings it is easier to let them go.
My youngest son has a proximal hemangioma on his brain stem in the circle of Willis. They cannot remove it, it sits there like a time bomb waiting to go off and steal my boy from me. Each night when the phone rings my heart stops untill I know that it isn't the call that Chris has had an other stroke.I get angry and I get sad and I live in fear of that finale stroke. BUT I try to take each day and make it as good as i can. The only alternative isn't really living it is existing.
We all have bad days when it seems that it is just to hard to go on.That is what this forum is for. Here you will get the support of people who understand what you are dealing with. Our symptoms may be different but the bottom line is the same we all have a desease that may one day kill us or cripple us or turn us into a veggie. Not a happy prospect. That is why we need each other. We get the strength here to carry on.
I pray that you find some peace of mind and peace of heart. You have been given a hard load to carry. Never feel that you are worthless, I am sure that your wife and girl know what you do for them and I am sure that they love you very much.
I will pray for you....DJM