macular degeneration, macular, diagnosis Sue’s Musings: Then and Now – Part 1 Revisited in 2018 – My Macular Degeneration Journey/Journal

Sue’s Musings: Then and Now – Part 1 Revisited in 2018

February 25th, 2018, was the 2-year anniversary of our website.  During these 2 years, Sue has written over 600 journal pages and there have been over 600 posts!  We have been busy, haven’t we? ::smile::

With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  In honor of our anniversary, I started going through the journal pages and highlighting some of Sue’s words to help you find pages that you want to read.  There may not be a post in this series each day.

From Feb. 25th, 2016 to Feb. 29th, 2016
  • “I am going blind. I’m terrified.”
  • “What my sweet, wonderful ophthalmologist did not tell me was how to cure what ails me. In fact, he told me there was no cure–well, ain’t that just dandy? ”
  • ” When somebody suddenly realized what the numbers were going to look like, they decided they had better do something to ameliorate the problem. Thus, all the research.”
  • “Carl Regillo is at Wills Eye Hospital in Philadelphia & has an office in Bethlehem, perhaps 2 hours away. And I got an appointment within 3 weeks of asking & they took my insurance. So far, it does not get any better than this.”
  • “If you’re reading this website just because you have nothing better to do or out of curiosity if you do not yet have a diagnosis of retinal disease and you become blind after coming in from bright light with long periods of recovery, get thyself to a reputable eye doctor. It is very possible you have the beginnings of a retinal disease. That’s the public service announcement.”
  • “I was waking up to three times a night in a state of pure terror. It was this internal alarm system that made me make an emergency appointment with my ophthalmologist.’
  • “Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.” * This is a great introduction to the Cognitive Behavior Therapy that Sue, as a psychologist, is using on herself.
  • “So, for one hour, I acted as if all was right in my world. I dressed up. I danced. I laughed. And for that hour I felt better.”
  • “Meeting with my BVS (Blindness & Visual Services) counselor, I signed the usual mess of legal forms and found out I was going to get three different services. One would be low vision support, one would be technology and one would be ‘habilitation services’…whatever that is.”
  • “I have become the ‘out to lunch lady’. OK, those of you who know me know I have always been a bit ‘out to lunch’, but these times I am actually eating. People are taking me to lunch and getting me OUT.”

written Jan. 18th, 2018

Next: Sue’s Musings: Then and Now – Part 2