I'm a 55 yr old nurse who was diagnoses with SLE 12 yrs ago after having a stroke due to Systemic lupus erythematosus (SLE) with Cerebritis and Vasculis Treatment: Pulse steroids and cytoxin for 2 yrs
Note: Multi strokes with minimal lt sided weakness which resolved. Since then had MI with stents placed due clots, my cholesterol is super low, and 3 occurence of resp. Failure due to SLE pneumonitis, or vasculitis of the lung. Its been complicated with pulmonary hypertension, and DAH or diffuse aveloar hemmorage during my hospitalization last month. I had to be intubated for 5 days. So now on high dose steroids and cytoxin which has always helped and Rituxin to also help with the APS. Unfortunately it not responding as well I relapse so I finish taking 2nd dose 1gm of Solu Medrol which turns out to be like taking 1400 mg of prednisone. I'm tweaking tonight.
So currently I feeling great full for all my friends, family and coworkers who have literally saved my life more than once and sorry for my self because I feel so alone and I don't know what tomorrow brings.
I hope to wean off the oxygen, get my strength up and return back to work by May. I miss not Working I'm a better nurse because I'm also a patient. But I worry if im strong enough and if occurs again ( the lungs fill up in hr or so and will it happen so fast I can get help)
LIFE is a gift. It's meant to be treasured and shared.
Thank you for reading hope can help some one who also feels alone, it helped me to share