View Full Version : Year from hell!

04-01-2006, 11:37 PM
I'm so glad this site is back up and running! I've had literally a year from hell since I started having seizures last April. Found out (after dozens of tests) in July 05 that I have lupus of the brain. Did 6 mos of chemo and then had hip surgery on Jan 12, 2006 to fix bursitis I've had for 3 yrs. I thought everything was finally improving with my lupus and then getting a chance to walk normally again after the hip surgery. Was I ever wrong!!! 3 weeks after the hip surgery, I developed a staph infection and spent 2 weeks (and 3 surgeries) in the hospital.

I'm now undergoing biweekly wound care (I have to wear a wound vacuum) to help heal the huge incision I have. Wound care is kind of like undergoing surgery w/o the anesthesia. My dr took me off Cellcept during all this because my immune system was so suppressed that I could not fight the infection. While in the hospital I had a huge flare and got so sick. My rheumatologist and surgeon talked and decided I have to stay on the Cellcept despite the immune suppressing effects.

I had had follow up tests in January (MRI and lumbar puncture) to see how well the chemo improved my lupus. There was some improvement from the tests of the spinal fluid but found out I have new lesions in my brain. Will be on Cellcept indefinitely.

Needless to say, my past year has been very challenging. I did find a local lupus support group and am taking the wound healing one day at a time. I'm so glad to have the support of fellow lupies!

04-02-2006, 05:40 AM
Holey crap, catlady! I'm glad you've found a support group, you've had a heck of a wild ride...

I hope you're finally on the upswing, and that the wound heals as quickly as it can - you deserve a BETTER year starting today. Will your doc allow you to take zinc? That can help in wound healing, I've been told, but it also boosts the immune system - so it is a balance...

Many hugs, and yes it is wonderful to be back here.

04-02-2006, 09:00 PM
:? Yes My wound care center advised me to take zinc, vitamin E and Vitamin C. I'm going to talk to my rheumatologist when I see her this week. I take One a Day weight smart plus extra of the 3 vitamins above. I'm just trying to get this wound to heal w/o having more flares. Will see what I can manage!