This is a photo of me in the London Hospital in Queens Square, preparing for my first round of Plasma Exchange. My treatment was five consecutive days of three liter exchange. This is the central line i had inserted to facilitate my treatment, in a desperate attempt to halt my excruciating spasms.
Stiff Person Syndrome was literally crushing me from the inside out.
The Plasma Exchange did not run smoothly. The effect of my daily treatment was causing my blood pressure to drop dangerously low, my oxygen levels were almost impossible to keep stable. My heart suffering the consequences. I was vomiting. Having spasms throughout each grueling day. My temperature was dropping so low, i was constantly shivering, teeth chattering, my skin changed color, like the life was being drained out of me. I was wrapped in blanket upon blanket, my husband trying to hold me to give me his body heat. However i stayed as focused as i could, staring into my children’s eyes in a photo that Jason held for me to see.
The image of my tots kept me fighting through what felt like i was in hell. How glad i was, that i was able to complete this first round of treatment, as three days after completion, i was able to straighten my legs by my own free will….and my spasms significantly reduced 🙂
I was still bed bound, having a shorter time frame to each spasm. This was a major breakthrough with my Stiff Person Syndrome 🙂 I was now able to tolerate light, sound, touch , movement. I could breath, talk above a whisper. This was not short of a miracle for me.
I thought this was the beginning of beating the ghost that haunted me…..Stiff Person Syndrome x