I am a 35 year old married female with 3 children.  I am a Registered Sleep Tech.  I have worked in sleep with pediatrics and adults since 2003.  I speak at national and local confrences on sleep related technical issues.  I have 3 children, Rachel 7, Rebekah 10, and Brittany 16.  My husband was the manager of a sleep lab and is a Sleep Tech also and is currently in Graduate school in a School Pyschology program at OSU.  I have a Dog named Joe, he is an Alaskan Malamute, he is as big as me.  We currently live in Oklahoma City.  I was born in New Jersey and all of my family live on the East coast either in New Jersey, Pennsylvania, or Florida.

     Thirteen years ago I worked 80 hours a week and attended a pre law program full time.  At the end of the first year I got very fatigued, I couldn't function and I had to quit school.  I took a medical secretary job and cutting back the hours I worked and went to school seemed to help for a while.  I became pregnant with my second child and when I talked with my OB doctor about the complications I had in my first pregnancy (blood clots in the placenta, and pre eclamsia, I also had a miscarriage in my second pregnancy) my OB became concerned and said she wanted to do some blood tests to see what may have caused my complications.  She called me and said I had a positive ANA and that after looking at my medical records she suspected Lupus.  All I knew about Lupus was that a friend of mine's mother died in child birth due to lupus complications.

     Back then things weren't too bad, my flare ups weren't that frequent and it was just joint pain, swelling here and there and trips to the doctor now and then.  I was given a diagnosis of Lupus by my Primary Care Physician, but since then I have had several doctors say they wanted to rule it out (nothing would thrill me more).  Now however, I can't work full time anymore, it (whatever it is) has caused Sinus Tach (heart beats too fast), Pleurisy (chest pain due to inflamation of the chest wall), fevers as high as 104 degrees (almost daily during flare ups which seem to be all the time now (this was when I joined 10-2008) along with chills, and profuse sweating from the fever(not exactly a professional look), pain in the joints especially the hips, ankles, back, shoulders, wrist, and elbows, osteoarthritis (not sure if that's from the lupus or just lucky).  As though that's not enough in October iof 2005 a large patient fell out of bed, I caught her and ruptured a disk in my back and couldn't work for 9 months.  I went back to work at a children's hospital and due to a compromised immune system I got MRSA (the superbug).  In the last 2 1/2 years I have had MRSA at least 18 different times.  I am allergic to 13 differnet medications that we know of so far (the doctor says that is related to an Autoimmune Disorder) the problem is the medication that they give for Lupus or autoimmune disease suppresses the immune system which they can't do because of the MRSA infection.  In the beginning with MRSA I took Clindomyacin, it worked for 8 months then the MRSA got smart and it stopped working, they tried Zyvox (it costs $800 a week) it caused a Seretonin surge in the brain and I was unable to walk, stand, or talk for 2 weeks (My husband had to carry me to the restroom) now there are only 2 medications that work on the MRSA Bactrum (I'm allergic to it I have to take heavy duty antihistamines that make me sleep 20+ hours and even then my tongue swells slightly, and I get short of breath-it's scary) and Vancomyacin, which has to be given through a PIC line, and causes hives.  The doctor says if the MRSA finds a way around the Vancomyacin it's "game over"  And thanks to the MRSA I am not a surgical candidate to get my ruptured disk fixed.

     My doctor recently suggested I go on disability, I'm only 35, I positively love my job, I just want my life back.  I want to play with my kids, I want to go back to college, I want to have hopes and dreams.  I keep hoping some doctor will solve the puzzle and tell me what's wrong with me so we can fix it.  But my doctor says we will probably never know.  I work now when I can, but I don't even make enough to pay for my medical bills, despite good health insurance.  I feel like to go on disability would be admitting to failure, giving up, I don't know what to do.  I'm worth more dead than alive, I'm sucking my family dry, at least that's how I feel. (Wow I was really depressed when I wrote this. LOL)

     Update:  On Friday the 14th of November, I went to the doctor, feeling very lightheaded and short of breath and it turns out my heart rate was 140 beats per minute.  The doctor gave me a beta blocker to slow down my heart, and hopefully make me feel better  but it makes me very sleepy.  I also have MRSA (again) so I am having to take Bactrum (again) with Visteril a very powerful antihystamine which also makes me sleepy.  The doctor did an EKG that looked fine other than being fast.

     Now June 2009 I have had a good couple of months, my spirits are lifted and I'm making an effort to see the positive, instead of the negative in all of my situations.  So far it's going well.  I've been working like a crazy person lately, but I'm enjoying it and glad to be able to help others and do something with my life.  I had written of my back problems, but no more, last summer I went roller skating with my girls, I was doing the Hokie Pokie on roller skates, turned myself about one to many times, fell and broke my arm in 3 places!  I had been on Fentanyl (a drug 80 times more powerful than Morphine, and on the news for killing people with defective patches, I guess I dodged that bullet. :0) anyway when I broke my arm, it made my back better - go figure, the day I broke my arm I quit taking the pain patch cold turkey!  I lost 60 pounds last year due to suspected Crohn's Disease, not a fun way to lose it, but I'm happy to have lost it. LOL  I still have a hard time with the thought of disability, I still feel like it's giving up, letting the Lupus win, which is a thought that scares me.  I guess only time will tell what I will ultimately decide. :0)

Michele