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Extreme debilitating Hip Pain. SLE + More...

I suffer from a number of auto immune diseases from SLE to Colitis. For years now I have...

Posted by ssela81

5 Replies | Reply | Watch This DiscussionReport This| Share this:Extreme debilitating Hip Pain. SLE + More... I suffer from a number of auto immune diseases from SLE to Colitis. For years now I have...

I really think my family & friends think Im a hypo...

I am sure there are a lot of people on and off of this board that feel the same way. It's a...

Posted by ssela81

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

Posted byssela81

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3 Replies | Reply | Watch This DiscussionReport This| Share this:I really think my family & friends think Im a hypochondriac I am sure there are a lot of people on and off of this board that feel the same way. It's a...

Reply: 2012 Lupus Roll Call - Please introduce yoursel...

Hello. Im 31 and was diagnosed with SLE after my first son was born in 2006. Since then,...

Posted by ssela81

85 Replies | Reply | Watch This DiscussionReport This| Share this:2012 Lupus Roll Call - Please introduce yourself.... Hello. Im 31 and was diagnosed with SLE after my first son was born in 2006. Since then,...

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