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Top things to not say to a brain tumor patient...

So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things ...

Friday, July 1, 2016

Pajama Day

So, had my audiology follow-up today. Or not. Since my doctor did not make the proper recommendation we did not have the necessary equipment in office to do the tests today. Got some real input and advice however. I was clearly informed that waiting does nothing for hearing loss if the cause is not cranial swelling. Because mine is not caused by cranial swelling I  get to return to the hospital for more evaluations.

My husband is really struggling because at my 4 month follow-up we brought up my hearing loss and it was dismissed out of hand. "I don't know why you would have that." No evaluation, no recommendations, no follow-through. Today we found out that time is our enemy if the nerve is functional. The longer I go not hearing, the harder it will be to relearn. We also began talking about the possibility of needing a second surgery for a cochlear implant. (God, I don't know how to do this.)

I hadn't considered it before but I really want that PA to not ever interact with a patient again. Mixing up paperwork, dismissing symptoms, and not following through on files and documentation- these are big problems when you talk about peoples lives. I'm so tired of trying to heal and then to feel this angry again is really hard. I have no way to express it. No way to feel or show it. The people around me have been through so much, breaking down and sobbing is just too much.

I declare today a pajama day. I'm going to go eat my feelings; chocolate, must have chocolate.