A visual update. Or, an update on my continued illness. Or, SSDD.
Here's the latest update from my doctors.
It has been 17 months since I developed the stroke in my right optic nerve that has left me for all purposes blind in my right eye. Sept. 20 will be 17 months on prednisone, and Aug. 26 was one year on methotrexate.
Time flies when you're having fun, right?
1. It seems the doctor at the Mayo Clinic has blown me off completely. After following his advice for a year, he has chosen to ignore my latest labs, sent by my doctor. And yes. Of course I followed up. So I say fine to that. I do have a free hotel night in Jacksonville, but I won't use it on that.
2. After 16 months on prednisone, I have begun the slow process of weaning off it. Thanks to my WONDERFUL doctor Katy Gustafson-Roberts (shoutout) I am on week two of the wean. So far, no ill impact from that. I made that woohoo announcement the day we started. I am on 7.5, and Friday I go to alternating 7.5 with 5. And then 5. and then 2.5 and 5. and then 2.5. And GOD willing. Done. *Lab work coming in two weeks. Pray for continued low sed rate and c-rp.)
3. I continue to take a weekly shot of methotrexate (nasty chemo shot) and will continue this.
4. My retina specialist Dr. David D'Heurle (shoutout( says my left eye continues to suffer hemorrhages *retinal bleeds -- see last post* and will. That ship has sailed. Can't go back.
BUT he also doesn't think additional eye surgery or nasty eye shots will make it better.
5. I'm in the ADA/Voc Rehab system and am getting some eye aids soon. Update when that happens.
And so, I wait and try to see. Try being the operative term. I have a bleed almost weekly now, sometimes small, sometimes huge (had a horrible one while at AEJMC in St. Louis and could not see clearly from Thursday afternoon til Sunday).
But I persevere. And I get funny, you don't LOOK sick a lot.
I am coping well. I am doing OK. I am chronically exhausted (but you know that). Some days I see better than other. I need warm socks and lots of spoons, but so do we all. I continued to be blessed with understanding friends, students and family -- so blessed.
We now return you to your own issues and trends. Keep me posted on you, ok?