Stage 1

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Dorthea Tanning

For me the first step to accepting my new diagnosis is to own it. I’ve written a note to Facebook to inform my real life friends and my cousins of the new diagnosis. I have published a lengthy post here at Curious Flowers describing the ordeal, albeit ineptly, and linked it to my primary blog Mindlovemisery. I’ve even adjusted my about pages. I can’t imagine going through every post I’ve ever published and omitting the word Epilepsy nor can I feasibly contact all of my followers. I wrote my mom a long email as well describing the situation. I have no idea how she will take the news. I am not sure if she is familiar with PNES or the dissociative disorders. Actually I feel fairly certain she isn’t familiar with PNES but I have no idea about the latter.

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I have even written an apology letter to Dr. G. Dr. S allowed us to read Dr. R’s notes and what he reported to Dr. G versus what he said to us (on numerous occasions) does not add up. Though I am not satisfied with many aspects of my care I felt it necessary to clarify the source of our misunderstandings now that I have discovered them and to apologize to her for my suspicion. I never fully trusted her because of my loyalty to Dr. R. I can admit that. I also wanted to give her the opportunity to clarify. I am still uncertain as to when she made the diagnosis of PNES if recently then it is perfectly understandable that I am only just hearing word of it myself. Even though she is no longer my doctor and thus I have no reason to see her again I still wanted to take responsibility. She has already emailed me thanking me for my letter and has informed me that she will contact me by telephone. Yikes I am so awkward on the telephone.

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I guess that’s stage one complete now I need to study PNES!

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16 responses

  1. I did not know Facebook had that option!
    I think it would be rude to say that I am happy for you, but I am glad, very glad that things are not just looking up for you, but moving.
    You will always have my support and I think about you positively all day, every day. You truly are an inspiration.

  2. What I know about PNES (and it is not a whole lot), it actually makes sense to me you may have that. From what I recall it is how the body responds to stress and well…you have had to deal with a lot of stress in your life. Maybe your minds way of protecting you. Big hugs and remember, it is just a label and one that will help you deal with it more productively. You are still the same beautiful person no matter what. I am always here for you and sending you lots of love and support.

  3. I’m sure that folks will understand if you don’t delete epilepsy from every post! That was the world you thought you were in; you were reacting with that as the diagnosis.
    Now, you have a new diagnosis, and a new world to venture into. I hope you have a detailed map and a good gps system.
    (((((hugs))))) (if you don’t mind hugs).

  4. I can imagine this all must be somewhat confusing to you. You have been thinking for years that you have a certain diagnosis then find out that is wrong and it something else all together. I truly hope that with this new diagnosis your physicians will be able to treat you and help resolve many issues for you. I sincerely hope, and I think it will be, your future will be much much brighter! 🙂

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