Lupus is Stupid

In 2009 my wife and absolute best friend in the world was diagnosed with lupus. She is the strongest person I have ever met in my life, which has made the adventure we embarked on since she was diagnosed an incredible journey of watching her fight to not let her disease control our life. For years I have watched her suffer with her beautiful smile very rarely leaving her face. Of course there have been some lost battles but for the most part she has been able to stay one step ahead of letting her health become the deciding factor in how she leads her life...all of this changed in February.
In February of this year Amanda was diagnosed with endocarditis which is an infection in her heart and she had positive blood cultures for 2 systemic(in your blood) staph infections. To treat these infections the doctors placed a P.I.C.C. line.  The line was placed in her right arm about an inch above her elbow on the inside of her bicep (she is rght handed). This was an interesting way for us to spend time together, because it all but rendered her right arm useless, and considering that I have not had a full head of hair in 20 plus years it was an experiment any relationship counselor would pay to have the results of having to wash her hair for 5 weeks (she has a lot of hair). The P.I.C.C. line also made it necessary for a nurse to come to our house several times a week for dressing changes and blood work, because Amanda sticking with her theme of nothing ever being easy got a raging fungal infection which was caused by the iv antibiotics a couple weeks after getting the line placed.
Since they found the initial infections in February she has not been able to work because she is constantly fighting new infections and her heart can never decide if  it feels like pumping enough blood to keep her upright and functioning . She has unexplainably lost a little over 35 pounds this winter (even though she still eats all the time to keep from getting hangry) which is saying a lot considering she only weighed 130 pounds to start with, multiple organs have become involved including her kidneys, her liver, and her brain. Which makes all of this scarier because no one seems to be able to figure out why her whole body has suddenly joined the fight.
After an overnight stay in the I.C.U. a couple weeks ago we were finally told that while our little island is paradise in so many ways that even with our multiple monthly trips to Miami we have gotten to the end of anyone near our home being able to help us,
This is how we arrived where we are now..at The Mayo Clinic in Jacksonville. At the begging of last week they drew about 8 gallons of blood and scheduled appointments all over the facility trying to figure out whats going on with her. After getting the results of a 24 hour heart monitor they fitted her with another monitor today that she will have on for the next month so they can tell whats going on with her heart while they try to help her. All the while the bills are piling up and we stay the course because I'd rather lose everything we have then not get the help we need because we ran out of money. That's me though. I have missed more work taking care of her in the past 5 months than I have missed in the past 25 years combined.
In addition to worrying about whether her heart is going to stop she constantly worries about our little family being able to survive if she makes it through this in one piece. Which in turn breaks my heart because I watch her worry about us both being out of work while she tries to keep me from having a nervous breakdown. Anyone that knows me knows that this is out of my character, and can attest to the fact that I am the worst person in the world when it comes to asking for help...but it has come to the point that Amanda has helped me realize that if I don't ask for help, if and when this is all over there is no way we will ever be able to catch back up with medical bills or be able to pay for the continuing care she will need, or for that matter be able to pay for everyday expenses(like gas to take her to the doctor)... we have received more help from our friends and family then we could ever imagine and if you are one of the people that have helped us please know Amanda would probably be dead by now, if it was not for your help and support so please use this forum as a way for us to keep you informed about what is going on in our life and to offer words of encouragement to her, not as a plea for more help from people who have already gone above and beyond....and always remember lupus is stupid!!!