SEP. 28, 2018 President Signs Bill Providing $14 Million for Lupus Research President Donald J. Trump signed into law today a fiscal 2019 spending package that includes more than $14 million in new funding specifically for lupus research and education. The House of Representatives and Senate already approved the spending bill, which also provides a significant funding boost to a record $39.1 billion for biomedical research through the National Institutes of Health (NIH). The spending package combines the Fiscal Year 2019 Department of Defense (DoD) Appropriations bill with the Fiscal Year 2019 Labor, Health and Human Services, and Education (LHHS) Appropriations bill. For more details on how this spending bill impacts lupus research and education, please read our earlier post, House Sends Lupus Research Funding to President’s Desk. This funding victory would not have been possible without the efforts of our lupus advocates from across the country, the Congressional Lupus C

Most days I can flow along like nothings wrong, even if I'm feeling a little rough around the edges.  I can move past the brain fog, push past the aches and pains and just live   survive.  I may get a little cranky, quiet or overly perky.  It just depends on the level of what ever is going on.   Then there are the days where you're swimming along, just floating down stream and someone hits the flusher and your whirling away.  It happens fast and you can't stop it.  Things start hurting, I get so tired and my body slows down to the point that I can literally count my heart beats because I can feel it.  Heavy arms and legs, dizzy head, the works.  This is a little harder to motor through and usually where I have to SAY something out loud about how I'm feeling.   Today was one of those days.  The best I can describe is it cruising along at the speed limit and suddenly spinning out and hitting the wall.  Most of the time when this happens I don't even get the o

Well guess who fell asleep at 10 pm!  I will give you a hint, it was not me! Here's to hoping she doesn't turn it in to an hour long nap like the other night.  I have a pretty good feeling I may drop my basket and run screaming through the neighborhood stark naked and scare the neighbors.  Might get a free ambulance ride and some drugs though, so it's all good!  Just kidding, I have to pay my dealer like everyone else!  OK OK, now I'm kidding, I'm too broke for that... but if I wasnt ... So this kid..all she wants to do is watch Paw Patrol, or play with her Paw Patrol figurines or stuffed animals or play in her Paw patrol tent.  They are cute, I totally get it.  But, she has these pajamas, OK...Little boy pajamas, and I don't give a shit if they are boys or girls or what, I am just setting the stage here.  My Threenager Princess has been wearing these freaking red Paw Patrol pajamas for THREE days.  She will not take them off.  I bought her some brand new

Today was one of those days in Kentucky where we are famous for our wacky weather.  It hit 60 degrees I believe, which means sinus colds all around tomorrow after being as low as single digits for the last few weeks.    On the upside my pain was down to a dull roar.  It was one of those times where I was scared to do anything because I didn't want to jinx myself and it was Sunday so i mostly hung out on the couch all day and read trashy historical mail order bride romance novels. And think.  Lots of thinking. It's funny the amount of things that can run through your mind on a normal Sunday.  Why is the sky blue?  Why was I born with brown eyes?  Things like that.  And...big things like, how to pull of a bank heist ...you know...the usual.  I started back on my Cymbalta today and I am preparing for the 5 days of hell as my body adjusts to it again. Today is horrible dry mouth and a bit of moodiness with little appetite.  Moving on to tomorrow which will be homicidal t

Today was a complete son of a bitch of a day.  I fell asleep at 6 am.  That was my bed time for last night.  My darling little Princess of a daughter woke my up at 10:30 and my body reminded me that I have a demon living in side of me. Everyone has those days where everything you touch turns in to flaming piles of dog shit, I know.  2 PM found me throwing a literal temper tantrum in my back yard and then I came in and threw things.  A lot of them.  Rule #1 as a Lupie.  DON'T GO OFF YOUR CRAZY MEDS!   I have a date with my Cymbalta first thing tomorrow morning   tomorrow afternoon when I get up. So when did the switch over happen here between being a Princess Mommy, and a Lupus Warrior Princess?  About a year ago I was diagnosed with SLE.  This winter has been rough! I've known for over 6 years that something wasn't right with my body, it just takes finding the right Doctor and having blood work done at exactly the right time to get something done. The last week has