Background of my Disease

It all started in 1995 with the death of my baby Shavonne at almost full term. The doctors at the time said, they had no idea why she died. It was the most dreadful time of my life. Then two years later, a miscarriage and while having a DNC, a very astute Gynacologist recognised the Butterfly Rash on my face. He then suggested I see a Rheumy, which I did. Low and behold I was then diagnosed with the dreaded Systemic Lupus Erythematosus (SLE). The early years I coped with a family and a full time job as a Marketing and Communications Manager for the leading Conservation organisation in South Africa. As the years went by, a divorce, another marriage and a baby (which scared the living day lights out of me)after everything that happened.

In 2005, I realised that all hell was starting to break lose. I could no longer cope with travelling for work. When I did, I would crash for days on end. We stayed in Wilderness at the time and decided to move back to Cape Town in 2006 and I decided that perhaps I should give up full time employment. It went downhill from there.

A few years ago my inflammation markers decided that it would no longer play along. It was always on the high side, but then it decided that it would misbehave even more. I had Pericarditis, inflammation surrounding the sack of the heart, then my dreaded Stroke. Thank God it was not severe and I got through it without any physical permanent damage. I do find I still have some issues stringing sentences together at times. This for a communications person is hell on earth, but hey we make due.

I now have inflammation markers that will not come down, so I am on cortisone daily and two handful of other meds. This is the reason for the Biologic Infusions. I started with Humira, injecting myself - flip not my cup of tea, did not work. Then Orencia, only thing it did stop my high blood pressure in it's tracks. Very grateful, I am still off HP meds. Then Actemra, also did not work. Now I am on Mabthera, twice a year, two sessions at a time in ICU overnight, as it can have some nasty side effects. It is basically the old Chemo Rituximab. We are hoping that the Biologics will bring down the inflammation markers so I can not take less cortisone on a daily basis. We not hoping for less pain, no Systemic Lupus Erythematosus, no Rheumatoid Arthritis, no Ankylosing Spondylitis, no Osteoarthritis, no Fybromyalgia just reduced inflammation markers. It has not been very promising thus far as I still have been admitted to hospital for cortisone pulse, i.e Intravenous cortisone administered over three days. I am now Diabetic too, because of the cortisone. Whoopie, is there any other disease lurking about waiting to pounce.