My name is Cassandra, and I’m a 28 year old woman, who has been diagnosed with lupus since I was 21. It’s been 7 years of daily struggle.
I’d like to say I’ll start at the beginning, but for me, that’s not that easy.
I lost a chunk of my memory due to Lupus Cerebritis, with which I was diagnosed in the summer of 2010, at the exact same time I had my son. To this day, I do not remember being pregnant. At all. Most of the year 2010 is at best, a blur.
What I do know, thanks to family filling in the blank spaces, is that I got pregnant at the very beginning of 2010. Not long into the pregnancy, I was unusually sick. The doctors did not seem overly concerned at the time, and said that it’s normal to be sick when you’re pregnant. Fast forward to May of 2010, after 4 months of an already ‘rough pregnancy’, when my partner and I took a trip to Barbados and Grenada for a ‘baby moon’ as they call it, before the baby came. Once we returned from that trip is where things really started to go wrong. Again, I do not remember being pregnant, or most of which happened during this time. What I do know, is that after a couple of trips to the hospital, I was finally emitted because one of my eyes was rolling around in the back of my head (so I was told). An MRI showed something going seriously wrong in my brain. I was flown to a hospital in a larger city south of where I live, and that marked the start of a long 5 month hospital stay.
My son was born, via emergency C section approx 3-4 weeks after I was flown to the hospital. He was only 27 weeks, and weighed only 2 pounds. As for me, after he was born, my body crashed. I’ve been told my loved ones had started thinking about making my funeral arrangements.
Somehow, my body fought thru it all, and came out on top. I know the first couple of months in the hospital was pretty rough. I do not have any memory of those times. My first foggy memories are of time I spent in a rehabilitation hospital. I know I was there for a while, and I remember being in a wheelchair for a long time. I have faint memory of going to physical therapy, recreational therapy and speech therapy. I had to go to speech therapy because my vocal chords were damaged when I was in the hospital, and I could hardly talk. My voice even now is raspy, I’m often asked if I’m sick or if I’ve lost my voice.
There have definitely been a long list of hurdles when it comes to living with lupus. For myself, because lupus attacked my brain, I have trouble with my short term memory, still to this day. I have trouble remembering things from morning to afternoon, afternoon to evening, and of course day to day. Things I’ve done, places I’ve been, things people have told me. Everything in my life needs to be written down, schedules, marked off, etc.
Lupus seems to be the disease that keeps on giving.
Recently, I’ve found out that I have AVN in both of my hips. AVN is avascular necrosis, and it means that the bone tissue is dying. I will need to get a hip replacement in my left hip as soon as possible, and in my right hip down the road as well.
One of the causes of AVN is Lupus. AVN can also be caused by steroid use, and chemotherapy. I was on steroids for a few years for Lupus, and I also had to undergo chemotherapy for my lupus.
Like I said in the beginning, it’s been a daily struggle.
No one said life was going to be easy! Just have to keep on fighting, and keep on hoping that one day there will be a cure for this awful disease.
Thanks for listening,