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Hi everyone. I posted here once back in 2006, but never introduced myself, and haven't posted anything since... so here I am again.

My name is Sandy, I was diagnosed with SLE in 2006 among a plethora of other autoimmune diseases which the list has only grown since then. I have two super-amazing children. My daughter is 5 and in Kindergarten this year, and my son is 3 1/2.

I have a very severe case of SLE, and have unfortunately been pretty unresponsive to all the "regular" treatments. I average about 2 days a month admitted in the hospital for flares or complications from my kidneys or neurological stuff. I'm currently doing Rituxan infusions, on CellCept, a high dose of prednisone (which I've been on long term), and a basket full of other drugs. I have a great rheumy though, and he is determined to get this under control somehow!

My DH & I will be celebrating our 6 year wedding anniversary next month- and I have to say he has truly been my rock throughout all of this. He gets all my meds together in the mornings and evenings, and is always there at the hospital and doctor appointments. He takes care of our house and kids all by himself sometimes in addition to having to take care of me, AND he works full time with a demanding job in law enforcement. I don't know how I would have made it through the past 3 1/2 years of being so sick without him.

Well, I feel like I've written a novel. I'm pretty involved with my local LFA chapter, and raise $$ for the Walk For Lupus Now event every year. This year I made a little video kind of like a testimony to let people know how lupus has changed my life. If you are interested in watching it you can go to youtube and type "LovelyLupie83 Living With Lupus" in the search box and it is there (I'd link it, but I can't until I've posted 15 times here!!).

Hope you all had a wonderful weekend!
 

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Hello Sandy and :welcome: (again)

You really have been through the wars :( but your husband sounds lovely (almost as lovely as mine :wink2:).

It sounds like despite everything you have a great attitude and I'm sure that that will continue to help you a lot. Hopefully your rheumy will soon find something that works more efficiently for you!

I hope you enjoy being around here a bit more, bye for now,

Katharine
 

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Hi and welcome to the site. Your hubby sounds great, it is nice to have support. I am glad you have a good rheumy, you sound as though you really need one. I hope they can get your lupus under control soon.

Deb
 

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Hi nice to meet u welcome
so sorry u have severe sle lupus.
glad u re posting tis helped me so so much im not yet diagnosed apart from photo sensitive rash.polyarthritis.
see u on some strong meds hows it going for u?
im on methotrexate for the polyarthritis.
take care chat room is fun to.
lv countrylass
 

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Hi Sandy,
It was nice meeting you in chat tonight.

You have a lot on your plate.:hug:I hope your doctor gets you on the right treatment plan that gives you some relief.

Here is a definition of what we talked about.

Antiphospholipid syndrome is a condition that can cause clotting within your arteries or veins and various other problems, some life-threatening.
Antiphospholipid syndrome may cause clots to form in your legs, a condition known as deep vein thrombosis (DVT). Antiphospholipid syndrome may also cause blood clots to form in organs, such as your kidneys or lungs. Damage depends on the extent and location of the clot. For instance, a clot in your brain can cause stroke.
In antiphospholipid syndrome, your immune system mistakenly produces antibodies to certain proteins in your blood. Antibodies are specialized proteins that normally attack body invaders, such as viruses and bacteria.
There's no cure for antiphospholipid syndrome, but medications can be effective in reducing your risk of blood clots
I found it here.
http://www.mayoclinic.com/health/antiphospholipid-syndrome/DS00921

Take care,
Lyn
 

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Hi Sandy,

I also enjoyed chat with you and Lyn last night. I am happy Lyn provided you a link to take a look at APS. Again I suggest you chat with your doctor and see if he tested you for this.

I am going to go check out your video link on you tube.

Hope to get to know you better and I am so happy your husband is supportive.
 
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