I have Lupus SLE

   By Niftydorkette  Jul 15, 2011

0

 But it does not have me.

I was diagnosed with lupus about 2 months ago. I’ve undergone so many tests I’ve lost count and I think I’ve had so much blood work done that I’m going to call my phlebotomist a vampire. I go to the rheumatologist every week, neurologist every 6 weeks, my general doctor every 8 weeks, and now a geneticist and high risk OB (no not pregnant). In short though, I have Lupus SLE and it’s currently affecting my brain and nerves. I have my days where all I want to do is scream "Why?!" at the top of my lungs but they are starting to balance out with days that are actually very good. I actually have to use one of those scheduling pill organizers because I am on so many pills. I get so tired of taking pills but I know that those good days would not happen without them.

Unfortunately, Lupus is not a widely discussed disease. When I was first diagnosed I wanted to learn everything I could. I quickly found that there are not a lot of resources for it. I scoured the internet for anything and everything I could find but all I would come across was the same generic description of Lupus SLE. All I was after, what I craved, was to know someone was feeling what I was, dealing with what I was going through, and after a week of this I made a decision; to get my story out there so that others could have something to relate to.

If you do not know what lupus is, follow the link. I also would recommend reading the following articles.

• The Spoon Theory
• My roulette kind of life
• Pay no attention to the girl behind the smile

Outside of my medical drama, I am a working wife and mother. I have a very active 7 month old! She is rolling over in all directions she can, holding her own bottle, eating oatmeal and lots of fruits, crawling, standing with assistance, and just gabbing away in baby jibber-jabber. She makes all my days worth while. That’s for sure!

My husband has Type 1 Diabetes and now with my diagnosis, our lives have changed. If there is anyone out there searching like I was searching please don't hesitate to contact me or just follow my journey. It's going to be a long one but I am determined to make something of it!