3/27/2014 - Blood work for my heart

The sickness you feel in your gut and in the sadness you feel in your heart when your on your lunch break, you sign into your "private" Lupus support group and your read a young beautiful girl in her 20's saying she can NOT take it any more.  She can't handle the pain and she thinks how easy life would be if she just took her life.  This is something I read on Lupus groups too often.  The pain this damn disease causes is unreal.  It's demonic is my opinion and how in the hell can we as a society sit back and NOT have a cure for this?  Without warning this disease will kill us Lupies. I could be at work tonight and die tomorrow.  Thats the reality.  So many of these Lupies live in isolation when in reality, they need to be out enjoying the breaths that God is giving them b/c those breaths may be their last!  There is beauty in this world BUT only with education and awareness is this going to happen.  Unfortunately, people that have this disease are WAY to embarrassed to talk about.  Shoot, I am single and I have no kids.  I have no one to embarrass.  LOL.  I  am ready to scream from the mountain tops at our senators and our government that we need funding, we need research!  Furthermore, how in the hell can we educate ourselves and families on a disease that even doctors and scientists cant even explain what causes it ANd that has NO cure AND that is fatal??  What kind of life is this to live??  If you let it, it will, without a doubt swallow you whole!!  

Compete for Ms. Nevada United States 2014

http://www.gofundme.com/7r7ibk


Well, there is one week to come up with the funds to compete for Ms. Nevada United States 2014.  I have been so sick that I cant even get up to brush my teeth let alone get out and raise the funds to compete for such an amazing gift as this title.  I say gift b/c this would be the platform that Lupus needs.  I also say gift b/c it would give me a reason to fight super hard to get out of bed every single day.  It would give me a fight in my spirit that right now I have a little of.  It's there.  The fight is there, but I need something to ignite my fire, a passion to keep me going and I feel that being able to have a platform to fight for awareness of such a horrible disease which has now plagued my life, it would bring meaning to my life.

You know, some people who have this disease have a husband or have children or heck, they even have their extended family around them.  That is enough to want to get out of bed each day.  Maybe enough to at least get you to make it down the stairs.  There are weeks at a time I cant even get down the stairs.

Having a platform to shout out and say "Hey, we need our congressmen to listen and we need more research and funding for this disease.  We need more education and not just for the public but for these doctors who have degraded not only me but other Lupus warriors."

Last week, it hit me how important it would be to my health to compete.  The endorphins it would give me.

And, its not just about "me."    I can relate to others.  I have the empathy and the understanding for many things, not just Lupus.  Lupus is one of many auto-immune diseases.  There are too many people who are suffering in silence and that is not the way it should be!!  We need to change that!!

A video I made about a month in the life of my Lupus Journey

And so my journey begins.... its off to a rough start but I still smile and I will beat this!

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

Really enjoyed this article that this husband wrote about his wife who is a lupus warrior.

http://m.seacoastonline.com/apps/pbcs.dll/article?aid=/20140307/LIFE/403070308&template=wapart

Appointment with Dr. West

Friday 3/7/2013 - Today I am seeing Dr. West.

Dr. Timothy West is an amazing Neurologist who specializes in MS and neuroimmunology .   

He also works at the "Cleveland Clinic Lou Ruvo Center for Brain Health"  here in Las Vegas.  His bed side manner for his patients & his understanding of the pain we endure is incredible. The fact that he completely understands that each patients suffers differently, the fact that although we may look beautiful on the outside, yet he can look at our blood work and scans and see that we are truly sick, it amazes me.  Because for 6 years of my life, I was brushed off from doctor to doctor and never got the treatment I needed or deserved.  When I saw him, he believed me and he introduced me to the best Rheumatologist in Nevada!  And together, He and Dr. Ewa Olech are an outstanding team who genuinely care about my well being.

Today we reviewed my MRI and MRA's.  The MRA's showed no problems at all :-) YAY!!!!  

As for the MRI's -- We found lesions.  Nothing to worry about yet.  It is something that we now have to watch.  Something that now has to be monitored and he explained to me what to tell the emergency room IF if were to happen so that I would get the right treatment when admitted.  This is the most proactive team of doctors and to be proactive with Lupus is the only way to stay alive and beat it!

Click here to read a great article on Dr. West in the LVRJ

In the Hospital 3/3-3/5

On Saturday night @ work, everyone kept asking me what was wrong.  I was just not feeling good at all. Considering that I am now used to always feeling sick, I just dealt with it.  

On Sunday night at work, around 8:30 I got back from break and had a sharp, shooting pain in my left side abdominal around my rib cage.  It took my breath away.  I told my bartender and he said that was my pancreas area.  It began to wrap around my back and made it nearly impossible for me to move.  My job is all physical labor so I pushed myself to the limits and finished my shift.  As soon as I punched out, I took a pain pill and went home.  When I got home, I put the heating pad on my back, took another pain pill in an attempt to dull the pain (it did NOT work) and I went to sleep.  I was hoping that when I woke up in the morning it would be gone.  

Monday AM, I had all the same pains :(

I called my GI.  Dr. Burnett.  He was out of town for the week so I spoke to Michelle his assistant.  After explaining my symptoms and knowing that my lipase has been high since June, she said to get to the ER "immediately."   

I had a friend over that said to me "Come on Jen, you look perfect.  Give me a break, is this just for attention or what?"

I do look perfect.  And I was built super tough.  I'm single and alone.  Therefore, I have ONE option to be tough as nails.  Giving up and giving in to this disease is NOT on my radar.  Therefore, I will fight till the end.

I drove myself to the ER on Monday.  They did blood work and found my lipase over 1000!!!!!   I was shocked!!  Because of that they did an ultra-sound & found my pancreas to be "severely" inflamed. 

With that said, I was immediately admitted to the hospital, rm#334.  I was NOT allowed to eat or drink for those 3 days I was in the hospital and I pretty much slept the entire time.

While there, we did an EDG, EKG, blood work every 3 hours, my blood pressure dropped to 85/47, so they had to place me on a special IV drip, that was dripping at a fast rate to raise up my BP.

What made matters worse was being alone.  Not having any family there to comfort me.  It was a scary, sad and lonely feeling.  BUT I survived it all.  Proved to me once again, how strong and how resilient I am. 

These images are taken 4 days after being in the hospital with no food.  Just a clear liquid diet.  Which is what is done to heal the swelling of pancreatitis.  YAY, These imgaes show that I can go home :-)

In Holding .. Waiting for Surgery.................   Waking up from Surgery.......

going through this alone

I dont like going through this completely alone.  I dont.  

I think my biggest blessing would be a support team and I have no one.  Each time I am admitted to a hospital, I have no one to visit me and show they care about me.  

Each time I have a surgry, I have no one to come home and take care of me.  Its just me being dumped off at home to load up on pain pills so I can cart myself around the house.

Just like right now.  As I type this, I am sitting at UMC waiting to be seen by the urgent care doctor. I am trying to save money by not going to the ER.  That visit is $350.00 plus the testing I need done.

This co-pay is $40 plus the testing I need done.  

But as I sit here, I have plenty of time to think.  I think about the pain that I am in, which really truly does hurt, it honestly does.  And being this strong is so exhausting.

Why do I have to endure this alone?  This isn't a self-inflicted disease.  I didnt ask for this.  I didnt do something to myself to create this.

I wish I have someone to hold my hand and tell me it will be ok. Hold my hand and walk through this with me.

But you look fine

 "I don't believe your sick because you look fine."

I'm SO sick of hearing that!  BUT I have finally realized that I need to take that as a compliment.  That truly just shows how strong I really am.  I am sitting here in excruciating pain but to others, I look "fine."

It used to make me angry and hurt my feelings until about 2 hours ago when someone said that to me after I received a phone call from my GI doc telling me to go to the ER.  It angered me that he said, "Come on Jen, your just looking for attention, this is crazy, you look absolutely fine, there is nothing wrong with you."

But then it dawned on me, OMG, that is how strong I really am.  Dang, I am super woman!!

Sunday 3/2/2014

Tonight at work, I got back from break and I had a sudden VERY sharp pain in my left side of my body.  It took my breath away.

A few moments later, it started to wrap around to my back and kind of up into my shoulder blade.  This was like nothing I have ever felt before!

I stuck out my entire shift at work regardless of how excruciating this was because I now know that I will forever live my life as a "Lupus warrior."  I can not give in every time that I am in excruciating pain.  I have to keep building my pain tolerance to the point that I can sustain and handle any level of pain thrown at me. Because I have one life to live, ONE.    There is no "Pause" button for me to hit just because I am in pain. It's now or never!  And my bill collectors wont let me hit "pause" either.  LOL

Right after work, I headed over to the 24 hour UMC quick care.  I found out that they don't handle these ailments.  Only the ER does.  Unfortunately the ER co-pay went up to $350.00 per visit now.  Who can afford that?

OMG Lupus, Really??

Visualize the effects of Lupus on the body

You can also Click on this image and it will become much larger, you can scroll over each body part and it will quickly explain how Lupus affects that body part.

Results from MRI / MRA

Results from MRI

Cervical MRI.
There is a cyst on the left side @ C7-T1
There are bulging discs @ C3-C4
& Degenerative Disk Disease @ C2-C3, C3-C4 and C4-C5.

Brain MRI, we found white matter lesions
4mm focus of T2/FLAIR hyperintensity in the left external capsuale

Challenges

Our most challenging life experiences hold tremendous, powerful; potential for self-discovery, healing, and transformation.