I know I haven't been on these boards much .... but first let me say thank you to all of you who were here for me when I needed some words of encouragement.
When I think back to April when I was diagnosed, I panicked and I just wanted something done... My ENT referred me to a specialist that I did not particularly like... but since my doctor had given him such a recommendation I rushed ahead and proceeded with CK. The first few weeks post CK were so difficult trying to deal with the overwhelming fatigue and trying to get back to work and get my life back. I was not getting the support or information needed from my doctor who just kept telling me what I should be feeling... and I leaned very heavily on the kindness of the Radiation Oncologist for support and suggestions. Things got easier... but not 'good'.
I made the decistion it was time to look for another doctor to follow my case as I just did not want a long term relationship with the doctor. I am happy to report that I have a new doctor out of the University of Miami Health Systems... who actually listened to my concerns instead of telling me how I should feel. At his suggestion I have started vestibular therapy and a 2 week course of steriods to deal with some of the other symptoms I still experience. I also was fitted for a ReSound hearing aid to amplify the hearing that I still have in my right ear at his suggestion. No, it is not a miracle cure... but it helps. I am still adjusting to it and at times just want to rip it off ... but I am looking at it as one more challenge to meet.
I realized this afternoon when my husband and I were sitting on the beach that I felt good today. Such a simple thing and yet I admit today was the first day I can say I felt good all day.
I am sure that some of that is the steroids I am half way through... but even more important, I have finally taken charge of this thing and being proactive doing what I need to do so I can feel good... and stay feeling good. I just wanted to share my story...and hope that it helps someone else.
