9 pounds in 25 days

My new Lupus pill has made me lose 9 pounds in 25 days.  I would consider this to be a diet pill more so than anything.

No one understands the PAIN of Lupus

It's so hard for others to understand invisible illnesses.

As you read this, please keep in mind that I absolutely LOVE my co-workers and we really are a family!!  We are all so good to each other :)

At work there is a section that we call "cardio."  We all hate that section.  It's the furthest from the well and it's always busy.   That section sucks the life out of me!!  LOL

When I first started in this lounge, I was 27.  I was gung-ho and had all the energy in the world.  I wanted to make all the money that Las Vegas had to offer.

Now, I don't care about the money, I no longer have the energy to zip around and be on a 2-way all night. 

I have an auto-immune disease that is kicking my ass and I plaster a smile on my face because we have a 5 star - 5 diamond policy to provide our customers.  I want to keep my job.   There have been plenty of times that I have left the floor and threw up due to the stress I placed on my stomach from holding in an absurd amount of pain behind a fake smile.

So last night, I had to work cardio when I got in.  THEN I went to break and was thrilled to come back and go into section 2 (the slow section).  When I got back, my co-worker said, "Jen, your going back into cardio."  I was like "Oh hell no girl."  She was like "What?!"  We all thought that was a go because it was  you ...  "Jen please, my foot is killing me."   "Jen, you don't understand the pain I'm in."

Ha, Really?!    How about "I have Lupus!"

I have told them over and over and over that I have Lupus. Last night I told them that I was in such bad pain and they kept asking "why?"  They DONT get it!

2/10/2014 Surgery

2/10/2014,  we tried out a new procedure (this was a surgery) to see if it would help with the pain the lupus causes my neck and the migraines it gives me.  It was only a test and I passed with flying colors.    The next surgical test is 3/5/2014.  If I can pass that with flying colors like the last, I will then go for the full blown procedure.

It was the nurses 2nd week doing IV's, needless to say, it sucked!  LOL, but if she was going to test on anyone, I'm the perfect person to try it out on.  LOL

More blood work

Today was round 15 of blood tests. Now I can actually watch the entire thing! At first the needle used to hurt and I had to look way. Then, it stopped hurting but I still had to look away. Now, it doesn't hurt and I watch the whole thing. Im a pro! Im sure I can just start doing it myself!! 7/23, 7/24, 8/14, 8/24, 8/26, 8/27, 8/28, 9/17, 9/26, 9/27 (er stay), 9/30, 10/3, 10/4, 12/17 & 2/24

MRI & MRA today

Today was a Cervical MRI, Brain MRI and a Brain MRA.  It took one hour and 30 minutes.

There is a sad part and a funny part to this experience.

Lets start with Funny!!

When I was checking in, the lady saw on my form that I have Lupus.  She asked "when where you bit?"
I chuckled!!!!  She looked dumb founded by my chuckle and I then realized she was dead serious.  She totally believed the old wives tale of where Lupus got its name! AND to top it off, she said she has a best friend that has Lupus and she said she has watched her deteriorate dramatically.  So this sweet lady has clearly been exposed to this auto-immune disease.

• Lupus is Latin for wolf,  Erythematosus means redness. In the 18th century, when lupus was just starting to be recognized as a disease, it was thought that it was caused by the bite of a wolf. This may have been because of the distinctive rash characteristic of lupus. (Once full-blown, the round, disk-shaped rashes heal from the inside out, leaving a bite-like imprint.)

As for the test itself, my pain volume level is turned up SUPER HIGH from the lupus and I can't handle too much of anything.  Having to lay there on that MRI/MRA board for 1 hour 30 minutes was agonizing.  I literally felt  like I was whacked on the back of the head by a 2x4 over and over again. I was crying so hard at the end and even trying the "referral pain" of pinching my arm wasn't helping.  I threw up right afterwards!!!
The technician was a sweetheart and she was super knowledgeable and understanding!!! thumbs up to desert radiologists!

All I ever wanted to be is a mommy

With everything going on, I am having an incredibly difficult time with this baby thing.  All of my friends have children and I have so many friends who have recently posted ultra sound photos and I see all these beautiful baby bumps.   I am so happy for these women.  What a beautiful blessing for all of them!!! This is not a feeling of jealousy at all.  It's a feeling of emptiness that I feel.  I feel I will never have that once in a lifetime experience of carrying a baby inside of me full term.  I want that 9 months of bonding with my child.  I want it more than anything in this world.  After an ectopic pregnancy & 4 miscarriages in 2012, I still have hope!! :)

Although Lupus and Antiphospholipid Antibody Syndrome make it near impossible to carry a little angel to full term, I'm determined that some day it will happen......some day....

02/24/2013 Emergency Dental Visit

Starting Late night last Thursday (2/20) I noticed a bit of blood coming from my mouth as I rinsed.  Nothing hurt so I let it go.  Friday, I went to work.  I noticed a horrid smell.  Nothing I did took that smell away from my breath!!!  It was disgusting!  As the weekend progressed, it got worse (how could that smell get worse!?!)  Then my gums felt inflamed and bleed so badly I couldn't brush.

9am Monday morning, The dentist opened.  I called and explained to her what was happening.  She said I needed to get in immediately.  She said the Lupus was attacking my gums and we needed to stop it immediately.

My lupus is in a state of flare at the current moment. During a flare it can and will attack organs and tissues including your gums.  She said my gums were as inflamed as they could possibly get.  When they get this inflamed, its a host for bacteria and that was the smell.  She said there is absolutely NO way to prevent this.  Lupus does what it wants, when it wants, to whatever part of your body that it wants.

ALSO, it took over 8 shots of Novocaine today for her to work on these 5  teeth.  These teeth are all root canals.  There are NO roots in these teeth.  Therefore, these 9 shots of Novocaine where just so she could touch my gums.  She explained that when the gum tissue is at such an extreme level of inflammation, it will not take the Novocain.

I woke up having NO idea that I was going to have to pay out of pocket $600.00 and sit in a dentist chair for 3 hours. This was only for the left side.  I still have to do the right side :(

If I did not do this, I stand a very very high chance of losing my teeth.  I cant imagine having dentures at age 35 all because I woke up one day with an auto-immune disease.

Today, she lasered my inflamed gums off and cleaned out what she could, then she filled the areas with an injectable antibiotic to stop the bacteria that was growing with the inflammation.

They also placed me on an extremely low dose antibiotic (which freaks me out, I don't believe in antibiotics.  I believe they do more harm than good BUT she said it was either my teeth fall out or I do this).

My dentist explained that my lupus has proven itself to be such an aggressive case that I will be required to visit her every 3 months.  She explained that at this point, I am looking at $1200.00 ($600 each side)every 3 months because this will continue to occur.

Dying doesn't scare me..The quality of my life leading up to it does.

Dying doesn't scare me at all.  What scares me is the the in between.  The quality of my life leading up to it.

When you get diagnosed with Lupus, you have no idea that it is truly as bad and as detailed and intricate as it really is.  What is happening to my body is insane.  Each day I awake and there is something new.  

It seems as though I am honestly living to work just to pay for medical procedures that are absolutely necessary to sustain my life.  I am a 34 year old young woman in my prime.  I'd love to be able to go and buy myself a bottle of perfume.  Or better yet, a new pair of sneakers.  Instead, I awake with strange pains, like today.  I had to rush to the dentist for an emergency visit which turned out to cost me $600.00 even with my insurance.  That's just ONE aspect of Lupus and there are hundreds.

I also had to take a "refusal" at work for a shift that I was called in for.  Therefore, I lost the money from that shift and I am now marked with a "refusal." Two more refusals and that is automatic termination.

I wonder how in the hell lupies without health insurance and who are not las vegas cocktail waitresses can afford to provide themselves with medical care which sustains there health.  How??

Why in AMERICA can we not use common sense?   If someone is diagnosed with an auto-immune disease that has a high mortality rate (such as Lupus) that has NO cure, why do we not have medical coverage provided for us?  Why are we forced to pay for these expenses until the day this disease finally kills us?

Not only do I get denied for Life insurance because of the mortality rate associated with this auto-immune disease, but it has also ripped my quality of life from me.  It has financially drowned me and it has stolen my identity.

After today's dental visit, I drove home and tears started to flood.  Am I going to survive this?  How am I going to afford this?  How am I going to afford not losing my teeth?  How am I going to afford to keep getting all these tests on a regular basis to ensure my organs are not shutting down??  The test every 2 months to make sure the lupus medication is not making me go blind?

I am NOT scared of dying.  I am scared to death of the quality of life leading up to that day.