Video -- "This is Lupus"

Video produced by the Lupus Foundation of  America, Inc..  Watching this Father, Joe McMullin, share his story about his daughter Kassie makes me cry every time I watch this video.  This disease still makes NO sense to me and we need the United States government to step up here!

Thank you to Dr. Susan Manzi, M.D. for pointing out exactly how all of us Lupies think and feel..........

• Lupus causes exceedingly high rates of heart attack and stroke.
• We fear disability
• We fear losing our jobs
• We fear the ability to have a child.
• If we do have that blessing, can we be an effective parent?  The disease makes us so sick, we are unreliable.
• We fear being a good spouse because Lupus is such a highly unpredictable disease.
• Every day, we fear Death............

We have to change this! We have to talk about it.  We absolutely have to Petition our congressmen. And we need our federal government to say that this disease has to get just as much attention as other devastating and potentially fatal diseases.
We need more research dollars, more physicians and more scientists thinking about Lupus and working on the cure. NOW.

Lupus Annual Expense

ER ..... again...

Blood work, blood work & more blood work..........

Another run through the Iodine IV CT scan machine, this time to check my heart

At least I get to look up & see the cute dolphins on the ceiling again

And that's my life, constantly hooked up to machines..........

And what the ER doc told me tonight was that my "D-Dimer" was super high AND there was some scaring in the bsae of my lungs.  They kept me tonight for observation just in case there were any complications.

What an experience tonight was.  At work, I had the most excruciating sharp shooting chest pain.  On the way home, I felt my right hand cramp up super tight.  I could NOT move my fingers at all.  I started to feel very nauseous.  This indeed prompted my stop at the ER.  I did not have any desire to go but I did.  Trust me, I'd much rather sleep in my comfy, king size bed with my cuddly puppers.  Not a stale, cold hospital on St. Patrick's weekend with a hospital FULL of people who have alcohol poisoning.

Anyhow, I blacked out when they took my blood.  That's a first!  I get my blood taken at least once a week.  Sometimes it will be 16 tubes!  I've never fainted or blacked out and that's even after having to fast.  I woke up and I had slurred speech, both hands were purple and I couldn't move my fingers b/c they were in spasm.

The hospital staff was once again amazing with me and took great care of me.  I couldn't ask for anything better than what Spring Valley gives its patients!

The doctor felt as though there was a blood clot that most likely dissolved on its own. She couldn't be too sure she said.  The labs were off BUT after doing CT scans with iodine, she couldn't see anything.

This is the life of very active Lupus

Dr. Olech, My Rheumatologist

3/10/2014
University Health Systems has the most incredible Rheumatologist and Neurologist.

Today was my visit with Dr. Ewa Olech.  My Rheumatologist.  I absolutely love her.  Her bedside manner is incredible just like Dr. West.  She honestly wants nothing but the best for me and she first will explain what is going on and then will give me options.  Then asks which route I want to take.

Today she explained that my blood work shows my Lupus is way too active and that we need to attack it aggressively.
My compliments are very low, my ANA titer and ANA titer 2 are still showing high.  It's starting to attack my organs (my pancreas), she was concerned about the brain lesions.  Now I am having a hard time breathing, my exhaustion levels are now at the point of sleeping every few hours and she said that means we have to treat it aggressively.

Nuclear Stress Test

Heart disease is a major complication of lupus and is now a leading cause of death among people living with autoimmune disease. Individuals with lupus are at increased risk for cardiovascular disease (CVD), which involves hardening of the arteries and can lead to heart attacks or strokes later in life. As the nation observes February as "National Heart Month," the Lupus Foundation of America is calling attention to this serious complication of lupus, an autoimmune disease that affects an estimated 1.5 million Americans. 

Today was my nuclear stress test.

Lupus can attack any and all organs.  Since being in the hospital for the pancreatitis, caused by the lupus, I have been having problems breathing.  It feels like a lead weight is on my heart.  So today was a test to check out my heart.  

When I arrived, they placed an IV in my arm.  This allowed the girl to inject a radioactive isotope. 

After waiting about 20 minutes after injection, she brought me back to a large imaging machine.  This machine moved around, taking pictures of my heart.

Then, I was moved to another room in which they did an ultrasound of my heart.

20 minutes later, I was brought in to the treadmill room.  The  lady explained that it was going to take a long time to raise my heart rate b/c I am so young.  Then she went on to ask why someone of my age was even in for a stress test.  I told her I had Lupus.  She got a sad look on her face and said she was sorry.  She said that's all she needed to know.  Less than one minute of being on the treadmill, the pain in my heart started and I could hardly breath.  I pushed through and finished the test.  She helped me out by holding my back so I could stay on the machine.  When I was just about finishes, I was given another injection of the radioactive isotope into my IV.

When I was finished, she walked me over and had me lay down.  The extreme pain in my heart started to make its way into my shoulder and down my arm.  I was having an extremely hard time breathing.

Once that subsided, I was moved back into the imaging machine.  The lady sat me under the machine to take images of what my heart looked like AFTER being on the treadmill.

Can't breath

I was on-call @ work today and got called in. Which is a great thing!! But my heart!! Ugh!! I can't breath and the pain is so bad it's causing me to be nauseous and my pancreas hurts, just my uniform rubbing on it hurts.

So is it my pancreas swollen and pressing on my heart or is it my heart? 

It feels like a 500lb weight is laying on my chest right now and I have to fight to breath. 

Cardiovascular disease & Lupus

Great article on cardiovascular disease and lupus

http://www.lupusresearch.org/research/acr/cardiovascular.html