Hello. Im 31 and was diagnosed with SLE after my first son was born in 2006. Since then, I've also been diagnosed with the following; Borderline Chiarimalformation, Colitis, Sjrogrens, Raynauds, Vasculitis, and I know Im forgetting more.
Life day to day is tough but when you have 3 children who depend on you each day, there is no choice but to paddle on.
I found that being forced to do something keeps me moving. Sure I can lay around, which Ive learned to love, but with no help and knowing lunch or dinner wont make itself, there is no choice but to push through the pain.
Ending statement.... I HATE BEING PUSHED! I would much rather sleep it off. lol
Welcome everyone! Glad I signed up and joined!View Thread
I am sure there are a lot of people on and off of this board that feel the same way. It's a horrible feeling when you can't say exactly how or what you are feeling because you can just imagine the rolling eyes or the ignoring you would get. My husbands family is a very hard skinned family. Anytime I am sick or cannot move (which happens many times a month), I feel ignored. I have 3 children; 6, 3 and 2. My 6 year old is in school all day but the other two are home with me day in and day out. When Im sick, and they know it, there are no calls or no drop by's. Its as if they don't want to help. Or even bother to offer their help. I always have to ask and I always feel like a burden. Any tests that I'm having done, I get "oh thats probably nothing". I hate those words because it may as well probably be nothing but the stress of having any percentage of it being "something" is worse. I never get any heartfelt feeling from them. Now my husband is very sympathetic. But I dont want sympathy. I want to be healthy and I want to be able to want to take my children to play in the park. He will come home from work when he "needs" to. Its never "I'm coming home", its always "do you need me to come home". Instead of just realizing that when I text or call and say "hey Im stuck or I cant move or Im sick", Im obviously calling you for a reason. I was never one to ask for help. It kills me to ask for help. I was always so independent, so alive. Now, not so much. I end up in the hospital at least 3 times a year. This year alone it was because I was vomiting so much that I needed 3 bags of IV to get me out of dehydration. It was so bad that my muscles were killing me all over my body. Turned out to be nothing. As my in laws predicted. Another time my face was drooping. Husband raced home, took me to the ER. Saw the dr and he asked me to do some expressions that you wouldnt be able to do correctly if a stroke happened. I did it. Turned out to be nothing. Again... It just drives me crazy that these people, among friends that Ive lost, believe there is nothing wrong. And this is because they don't hear about Lupus like they do Breast Cancer, or MS. Lupus is a serious disease. I think it's even worse than BC or MS because you NEVER know which way this disease will turn. Never. I recently contacted the Lupus foundation to see what can be done to bring more Awareness. I want to see LUPUS commercials on TV. I want to see Purple products on stores shelves like I see Pink Nike socks for Breast Cancer. Thats what I want, besides a cure for this nasty nasty disease. I own an automotive website called www.custolight.com and I have owned and ran it since 1999. In January, I want to start donating to the Lupus Foundation from every order we receive. I sure hope that helps inch everyone in the foundation to push for more awareness.View Thread
I suffer from a number of auto immune diseases from SLE to Colitis. For years now I have had right hip issues that all doctors that I have been to cannot explain. The only help or advice I am given is to take pain medication and rest. I would love to be able to do that but I cannot when I have 3 children under the age of 7 in my care day in and day out. When this problem occurs, there are no warning signs. I get "stuck" wherever I am when it happens. It feels like my hip locks up. The pain is excruciating. I cannot move at all because if I try, it hurts worse. I have my cell on me at all times and just a few days ago I was stuck in my bathtub. Embarrasing to have your mother come from her home 20 miles away to help you out. She was able to push me around in a computer chair (with wheels) to get me to the couch, gave me a percocet and ibuprofen and off to la la land I went. Every doctor that I see has sent me for many tests which have come back showing nothing at all. I dont know what other tests to ask for or what else I can do to shake this. Its constantly on my mind if it is going to happen and when. I never plan anything because I never know if I will feel ok to walk that day. I just called my Rheumi today to ask her if she could prescribe me a wheel chair. If I use the computer chair, someone needs to push me around in it. If I had a wheel chair then I could do it myself and my leg wouldnt be "hanging" and making the pain worse. Im at a loss. I dont know what to do. Im sick of being a burden on my family. I am 31 yrs old and feel like I really am 80.View Thread