I was diagnosed with Lupus SLE and Nephritis in 2011 shortly after I became engaged to my now husband. I first noticed that I had stiffness in my wrist and originally thought I had arthritis. I then had pleuritis, and shortly thereafter developed a life threatening clot in my leg. This all happened in a matter of two months. I was hospitalized for nearly three weeks and my blood pressure shot up, my lymph nodes were all inflamed and the doctors thought I had lymphoma. After my biopsy which ruled out cancer, I tested positive for lupus. My kidneys were affected and I had Stage 4 Chronic Kidney Disease with 23% kidney function and in a full blown flare.
It was one of the worst times of my life. I was on over a dozen medications including high doses of Prednisone for almost a year. Fast forward to 2018, I have been in remission since 2013 and I started working with specialists to plan pregnancy. We had to see fertility specialists which was an emotionally draining experience, but we managed to get pregnant on our first try with IUI. I found out I was pregnant with twins six weeks into my pregnancy.
I was super high risk and had a difficult pregnancy not due to lupus but because I had an incompetent cervix. I gave birth by emergency c- section at 25 weeks. My girls were 600 and 700 grams and were born with several life threatening complications and remained in the hospital for 4 months. A month after I gave birth I developed a second clot in my jugular vein leading to my brain and i was hospitalized again. I am now on blood thinners for life but I take only two immuno-suppressants to keep my lupus in check.
Today my twins are 3 and a half years old and are healthy and happy little girls. I am managing my lupus well and even though I get very rundown sometimes and I am susceptible to infections, overall I have been doing very well. When I feel very tired or stressed (I’m a family lawyer and I work full time so I am very busy), I try to take some time out for me. I don't really have pain days per se and when I do I still hang out with my girls but I take it easy (do a craft, watch Paw Patrol lol or play in the back yard).
I have a positive attitude and I am blessed to have support from my family, especially my husband.