Rumination

Weekly drives to Boston from central New York give me time to ruminate. Five hours, in fact, of time to think, ponder, consider, etc. This has been such a strange journey and I can’t help but think what it’s all for. Had I the crystal ball to see into the future or the answers to …

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 …

So far…

Nearly two weeks have passed since injection number one. Now I’ve got seven under my belt. Dare I say it’s getting easier? I still have to engage in deep breathing as the needle goes in and I push the fluid under the skin. How is it that the rest of my family are firefighters and …

And so the study begins…

After my screening visit May 18, I returned to the Massachusettes Eye Research Institute in Cambridge on June 7 to begin the alpha feta protein study regarding the drug’s usage in treating moderate to severe uveitis. There are, as I assume is typical in these types of pharmacological studies, many unkowns. Neither I nor the …

Thoughts on steroids

I was recently asked about my thoughts on prednisone (steroids). Honestly, combatting the side effects of prednisone is what led me to start this blog. I’ve been on varying doses of the drug for two years now. At one time I was taking 60 mg, then weaned down to 40 mg then went off and …

Daily guru…

I enjoyed this missive from the daily guru (thedailyguru.com): Create space “All this talk and turmoil and noise and movement and desire is outside of the veil; within the veil is silence and calm and rest.” — Bayazid al-Bistami We need to create space if we desire to change and grow. Only in emptiness can …

Gearing up

I think the things that bother me most about BSRC is that it’s rare and not obvious. I mean, to look at me, I appear fine. And generally I feel fine. Take away the prednisone and I feel great, actually. So, I find myself explaining, over and over, to well-meaning inquirers what this condition is …

What this is all about…

Welcome to my inaugral post. I was diagnosed with Birdshot Retinochoroiditis (BSRC) inApril 2006 after experiencing a year of symptoms. This auto-immune condition is rare and is a form of uveitis – inflammaton of the uvea. I’ve been on varying doses of oral prednisone – let me tell you NO FUN – as well as …