Feeling pretty excited find this group support online. Read some of the stories of others here and talking to a few folks in the chat room I have a renewed since of hope.
I am starting all over really....learning about TBI again...learning I need to reevaluate my situation again. I know many of you have been dealing with this a lot longer then I have and I also know I am not a newly diagnosed. I guess I may have chosen the wrong path back in 2009 when I was diagnosed. I didn't want to take medications and perhaps a part of me was in denial out of fear of being disabled or needing long term care. Some of it was what my neurologist was saying to me. I am in a new health care network that I wasn't then so I am going back to my regular doctor and starting from square one. With a new MRI and new CAT scan and anything else they have come up with since 2009. Start finding out what resources are in my area, file for disability, and just embrace this thing for a change. Rather then simply knowing I have TBI and doing what I can alone and by myself.
I am just grateful that since I was first diagnosed that finally others are out there as well as since re-research from just 4 years ago things are finally coming to light about TBI there is a whole lot more information and groups like this out there. As some have said here they feel invisible. I call TBI my invisible monster because no one but me seems to know I have it nor does anyone but me constantly deals with its symptoms. I have an ex mother in-law I keep in-touch with due to my kids, and she tells me all the time "as long as you have two hands and two feet you can always build and work." she says this in regard to me not being employed and finances being slim and rough at times. I constantly have to reminder her what I deal with on a daily bases. As always she quickly dismisses it and brushes it under the rug and goes back to talking about what I can do to be gainfully employed again. It just frustrates the crap out of me but I hush and let her say what she likes until next time. Worse yet though is when I don't do as she instructs me and I am asked about it. I get "See you should have listened to me and do what I told you" then I am back to square one again and repeating why I can't work what issues that come from it, why my health keeps me from hold a full time job and so on. She is the extreme one in my life, others are less obvious and tamer.
I hope that in my new found quest I will find better ways of coping with those type of people as well. For now though a simple thank you to those here for opening my eye to hope again and I guess I will be a fixture here soaking it all up like a sponge as I start again my journey with hope, faith and excitement.