Update
I’ve been taking the alpha feto protein via injection for weeks now but don’t see any dramatic difference. The cyclosporine was reduced by 100 mg due to toxicity issues and at my July 5 appointment with the MERSI docs, my vision was holding steady. I’ve noticed some slight flashing and morning light sensitivity recently and hope it’s just part of the shifting.
August will, indeed, be a busy month. I have to travel to Boston every week as the docs wean me off the meds. It’s a process to determine whether or not I’ve actually received the alpha feto protein or the placebo. Should there be flares during this process, Dr. Foster will remove me from the study and immediately start me on intravenous zenepax treatments.
I’m not sure how I feel about all of this. My goal has been to stay present and contend with whatever arises. But I have to admit that when I experience a bit of flashing or some other vision anomaly, fear rushes in. As soon as I become aware of that, however, I strive to let it go because fear, although helpful in the immediate, is destructive in the long-term. I am striving for remission and in that journey there is no room for anything but a minor spike of fear.
I am also reminded to take care of my body, to ingest foods and drinks that support and encourage my overall health. When I take a step back and look at it all, it seems that this vision challenge is leading me to a sort of body/mind transformation. And I find that exciting.