Sandra Mullen

Sandra Mullen's picture

Sandra Mullen

I like clothes, make up and shoes, especially flip-flops,&nbsp; of which I have a whole basket full and a number of pairs scattered around the house. I was an RN for 25 years, 10 of which involved working in an innerog city trauma center, and flying as a flight RN, logging over 500 patient transports, not including the flight of 2 German Shepherd Rescue dogs. While I was a flight RN, I noticed I was having problems finishing my 5 day a week workout at the gym and, after moving to South Florida in 1994, was diagnosed with lupus and fibromyalgia. I met my husband in Florida, while working in a medical ICU. We married in 1997 after dating for only 6 months. The following year we planned to move to Denver and, as life goes, I found out I was pregnant the week we got back from securing jobs and a place to live. We stayed in Florida and I had my son at 33 weeks. He was little but strong. We stayed until he was 4, since my husband's parents lived there, but my father-in-law died and my mother-in-law decided to move back to NJ. So we moved back here too, to be near our families. My lupus worsened in Florida, and I ended up on Social Security Disability in 2002.&nbsp; Since then, I've become a lupus advocate and an educator of nurses on the care of lupus patients. I've been unconscious from respiratory failure twice, once causing cerebral anoxia (House fans will know that means brain damage). I still can't remember some things from before that coma, but generally I'm still fairly intelligent. <br /> <br /> My husband, who is a respiratory therapist, just got a job at our local hospital, which is only 8 minutes away&nbsp; cfrom home. Our little preemie is now 10, has been on the principal's list for all A's since 1st grade, and is going to Space Camp this summer.&nbsp; Like most folks, we're struggling a bit with this economy; we were going to put in an in-ground pool last year, but couldn't get the financing for it. I do water physical therapy at least 3 times a week at our hospital's wellness center, but if we could put a pool in, I could do it every day. I have osteoporosisi in my lumbar spine, which makes me very susceptible to fractures and I took care of enough women with spine osteoporosis to know that it only takes a sneeze or cough to break a vertebrae.<br /> <br /> I'm determined to get my life back. Starting physical therapy again has reminded me of how good it feels to work out. I'm so overweight it's frightening, and everyone, including my rheumatologist, blames it on my 15 year dependence on prednisone. I'm waiting to hear when I can start weaning it again, but the last 2 trips to ICU was when I was weaning it and the lupus in my llungs started acting up, so it's nerve-wracking. I'm going to be on the phone on May 23rd, when Moody Blues tickets go on sale for their concert at the Borgata, in Atlantic City. I want good seats. I've had first row seats and last row seats and first row ar7 e definitely better. After going to 27 concerts, I think I deserve good seats. My son went with my husband and I to their last concert at the Borgata, and he loved it. He should- he heard it when I played their CD's to him in my tummy and it was the music on when he was born. Oh, and Laverne and Shirley was on the TV, so I hope he heard Justin Hayward's voice and not David Lander's (aka Squiggy). I wonder sometimes.....<br /> <br /> I'm hoping for a cure for lupus, and a specific test for it. My new rheumatologist doesn't think I have lupus because all my labs came back normal. So she stopped one of my medications, which takes 3 months to leave your body and when I've stopped it before, I flared terribly 3 months to the day. So don't try to find me on July 18th: I'll be either in bed or at my doctor's office telling her NOW DO&nbsp;YOU&nbsp;BELIEVE&nbsp;ME?&nbsp; It's a phrase that all lupus victims have said at least once in their life and there are probably a whole lot of other diseases that are the same way. <br />