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New Lupus Foundation Message Boards!!

New Lupus Foundation Message Boards!!

I’ve said it before I’m all about social networking.  When I got the email announcement from the LFA group from Facebook talking about the new message boards I thought, “yay!!!”.  If it hadn’t been for a Lupus message board on yahoo, I wouldn’t have met some wonderful people that I am so grateful to have in my life right now 🙂  I also wouldn’t have learned from some ‘veterans’ on the board how to keep good medical records, how to be my own champion when it comes to insisting on my full 15 minutes with the docs (if your doc won’t listen to you, leave em) and the importance of having a good packet made up for ER visits.  If you can’t speak for yourself during an emergency it’s good to have a file of the meds you are taking, the conditions you have, your rheumatologists number, etc.  Anyway, I’ve just signed up for the new message boards and if you wanna check it out the link is here.

A Trip Down Lupus Lane

A Trip Down Lupus Lane

In my first year and a half of being sick I was led to believe that I had Lupus. When I read that sentence back I see that I sound angry. I’m not. It was just so hard to think that you have something each day only to learn one day that you probably don’t. With autoimmunity, it’s really hard to pin down a definite diagnosis. Most people it takes years to get one, and usually people have more than one autoimmune disease. My last labs came back with my first positive RA factor, so now my rheumatologist is leaning towards Rheumatoid Arthritis as my primary disease. I also have palindromic rheumatism, dermatomyositis, and peripheral neuropathy.

I consider myself to be a huge advocate for Lupus and I always will be. I’m a lupie at heart 🙂 I’m an e-advocate, which basically means writing to our senators and congressmen on behalf of the people. I receive alot of updates all the time which I am going to be passing on here. If we can find a cure for Lupus, we can find a cure for all other autoimmune diseases!!!

Each second Wednesday of the month there is a live Lupus Chat at lupus.org. This week’s chat is going to be on Staying Healthy in the New Year. You should check it out. They are a chance to ask the experts anything you wish pertaining to the disease. (for free, take advantage of that!) Here is the link.

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