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Month: July 2009

New Lupus Drug on the Horizon?

New Lupus Drug on the Horizon?

BENLYSTA.  That is the name of the potential new drug for lupus; the first in 50 years!! I am excited and I don’t even have lupus 🙂  Lil humor here…  So far it has passed the first clinical trial and it’s heading into the next one.

Here is an excerpt from the President and CEO of the Lupus Foundation of America:

“We look forward to hearing the results, this fall, of a longer-term Phase III clinical study of BENLYSTA. The data from both studies will be evaluated by the U.S. Food and Drug Administration (FDA). Should the FDA ultimately approve BENLYSTA, it would become the first drug successfully developed to specifically treat lupus since the disease was discovered more than a century ago.

I happened upon this yesterday over at On the Road to a Cure, the LFA’s blog.  It’s a great resource for info on everything lupus.  They also have an extensive list of lupus blogs on their blogroll, if you haven’t been over there you should go check it out.

And now for this amazing, exciting, historic news, here’s President and CEO of the Lupus Foundation Sandra C. Raymond to tell us all about it!!

Thank You Rob Thomas for giving us Her Diamonds!!

Thank You Rob Thomas for giving us Her Diamonds!!

I am so glad I saw something about this on Facebook.  Here is an excerpt from the bio on Rob Thomas’ website:

The album’s first single, the kaleidoscopic “Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incredible amount of sadness that comes with something like that. There are moments where I think I flirted with a thinner personal line than I’ve ever done before, but, really, I’m writing a song about how people deal with hard times, and that hard time is universal, that hard time can be anything.”

That gift of turning the personal into the universal has long been a hallmark of Rob’s work. “If I can take a specific moment in my life and write about how that moment makes me feel – not about the moment, but the way the moment makes me feel, all of a sudden I’m in a territory where a lot of people can understand that. A lot of people understand that feeling; they have other things in their life that make them feel that way. If I write ‘3am’ about my mother dealing with cancer, that’s a very specific moment, but if I write about how that made me feel, then it opens up and it becomes a universal moment.”

I went to the site and watched the video “Her Diamonds“.  Wow.  Writing a song about his wife’s illness and how it feels is really intimate and I’m so glad he did it.  It opens up conversation about autoimmune disease to his fans.  What is it?  Which one does she have? etc.  It must have been hard to open up their personal life and talk about his wife’s battle with autoimmune disease and how it affects both of them.  I wonder if she wanted him to, to help the cause.  I wish I could say thank you to him personally, I can’t so I will just say it here.  Thank you, from the bottom of my heart-thank you.  My husband and I watched your video and were both so touched.  You nailed it right on the head.

I’ve always said if more famous people would speak about autoimmune disease, the population would be soon asking questions about autoimmunity.  We really need more press and exposure.  A lot of you know that there have been no new meds for lupus in 50 years.  That’s just inexcusable.  That’s just one example of how autoimmune diseases are at the bottom of the barrel when it comes to exposure, research dollars, and just plain understanding.  How many people live with the pain and fear of their body’s attack on their body.  Even that sentence doesn’t seem to make sense.  None of it does.  It’s so random.

Done, off my soapbox now.  This is a video of Rob Thomas performing this song Her Diamonds live on the Ellen Show.  To see the video of the song, you can go to his website at and click on the videos tab, or just click here.  🙂



*******UPDATE*******I added his video, Her Diamonds to my vodpod on the left side of the blog.  It is the first video in the lupus vids.  Have fun!!  Even though I want everyone to hear this song and talk about it, the song kicks ass. It doesn’t need a small town blogger trying to sell it.  Enjoy!


Rotten burger + no potassium= Worst Day EVER

Rotten burger + no potassium= Worst Day EVER

I have been gone for a while now.  That’s obvious, huh? 🙂  Since my last post I have been very sick.  I’ve been in and out of the hospital.–  I got food poisoning a couple of days after I  stopped taking a diuretic to remove all the water from my body.  I blew up like a balloon-it was so bizarre!  My skin was stretched so tight from being completely filled with water, that I could only bend my legs so far or they would rip.  Wow, what a pretty mental image…So anyway, I had just stopped the medication when I ate the rotten hamburger, and while taking it you are supposed to get your potassium levels checked each week.  The first week I went in and my doc had been called away on an emergency.  So I asked his assistant if I should just go to the lab and get my blood draw and she said “Nah, he’ll see you next week.”  I left the building feeling a bit weird.  I hate it when I feel that I’m not asserting myself in situations that call for it.  When you are chronically ill, you have to be your own champion.  The people at the doc’s office have no clue what it’s like to be you.  They don’t feel your pain, they don’t lay in bed at night and pray for relief.  I could go on and on… The following week I go in to see him and I stopped taking the med 2 days before my appointment.  At the end of my appointment he is ushering me to the door and i ask about the blood test again to check my potassium levels.  He says, nope.  You are not taking it anymore.  So I leave feeling weird.  He is the one who told me in the beginning that once I started taking this med it was very important to check my levels.  Could be dangerous blah blah blah.

On the way home from the doc’s we go through a drive through because I hadn’t eaten before we left.  Oh My Gawd.  If I could turn back time (go Cher) I NEVER, EVER, would have eaten that damn dollar burger.  That evening I was popping rolaids and going uuuunnnnhhh.  Or something like that.  So I finally tell the Big C that I don’t feel good, and I mean, not good at all.  I end up running up the stairs, and I am in the bathroom for like, forever.  But, something changes.  Suddenly the pain is so great that I start yelling for C, somethings wrong.  And he’s like, um yah, you’re in there crapping your brains out.  Your sick.  And I say no, call 911.  He is standing in the doorway and I’m on the commode and I’m screaming.  Within seconds I am covered in so much sweat that I look like I fell in.  C is trying to talk me out of my silliness, calling 911 for a major evacuation?  But he must have seen something in my face or the tone of my voice or the way I kept saying, call 911, call 911…after that I was out.  They came and got me off of the toilet, got me in a transport chair,  that I ruined within minutes I was told, and to the ER.  I don’t remember anything about the ER except for one moment that I will spare you from and when someone said “why is she so out of it” and someone yelling at me for my arm.  I couldn’t move it.  Then there was pain.  It felt like someone was shoving a metal rod up my arm and I was trying to get it out but they were holding me back.  This whole time I didn’t see anything.  I had my eyes closed C said.

Turns out my potassium level was dangerously low.  That’s why I was so unresponsive.  I was heading out.  So, to wrap up this l o n g story with possibly TMI,  my doc never checked my potassium levels after chemically ridding my body off excess water.  Then, when I ate the death burger, I was already low on potassium and dehydrated.  I’m lucky I’m here right now.  After hearing about the whole experience in the ER, I was mortified, so embarrassed, sure I was going to run into any one of the staff in the grocery store and I would never know it.  But they will see me and go, ‘oh my, it’s the poo queen.’  It’s OK.  C told me that as soon as the blood work came back and they saw what was wrong, they were more sympathetic.  I guess it probably would have ruined my night too if I was working the night shift and in came me.  Maybe I’ll send them a card.  I don’t know if I can find a ‘I’m sorry for ruining your scrubs’ card.  Big C told me that when the nurse wheeled me to the front door I apologized for making it such a crappy night for him.  Always the comedian…  I think I’ll just leave it at that and wear shades when I go out.

Until next time, hopefully better times…  🙂


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