Sometimes I wish to leave some blog entries up, as the most recent, longer. But then some new develop begs to be written about or written out, then the last just does not stay in that position as long as I'd like it too...
This morning I had the follow up with neurologist #3. This is the one whose company does not take my insurance so I will have to pay significantly more for her because she is out of network. But Dr. Odd does not treat TBI and does not want to and Dr. Tangled was a complete jerk.
Where she kept repeating, "you have to untangle that mess before you even start climbing the mountain," and "you haven't even started doing anything," new neurologist was saying, "you are probably misunderstood a lot." And where Dr. Tangled, proclaiming that it was due to the location of my brain injuries, proceeded with condescendingly lecture me for at least 5 of the 20 minute appointment about how I did not respect time boundaries; while on the other hand, Dr. New Neurologist told her receptionist that the 15 minute slot they scheduled me for was not enough, it needed to be a 45 minute slot and she was sorry the next patient will have to wait but she needed to allow that amount of time for me.
She did not lecture me for her or her office staff's shortsightedness and she recognized that I needed more time due to my injuries and the mess of misdiagnosis that followed.
Then to top it all off, after actually pulling up and looking at my MRI with me she praises me for how well I am doing considering the location and extent of my injuries. She tell me I am doing so well and explains very briefly how bad of shape so many people are with injuries like this.
She sees me and I feel validated. I am so grateful for this lille bit of praise because deep down I know I have done well, but unfortunately I have to often been discredited for doing well, as if I were making it up... Though I did not tell her this I suspect this may be why, unprompted, she told me a few times "you are not making this up." I suppose it like I have stated before, "you know someone is really good at something if they make it look easy." She can see that. She gets that.
Obviously she is the one who is worth paying for.
...and she needs a better/shorter name than Dr. New Neurologist... Maybe Dr. Sweetie because that is what she referred to me as so many times and she is very kind herself... But that does not fit quite right... Dr. Sweet? Dr. Kind? Dr. Hallelujah-Praise-the-Lord-finally-someone-who-is-actually-listening-and-cares....
I think Dr. Sweet. I am really glad to have found her. She is helping me untangle. Finally I have a neurologist who has taken the time to explain the TBI and whose professional opinion and treatment is not being swayed by the mistakes and intentional defamations strategically placed in my medical records by my ex-providers at the Neuroscience Institute.
It was never a concussion. That is now confirmed -Dr. Tangled in the first follow up looked at me as if I were crazy for even asking if it had been a concussion, stating very clearly that it has never been a concussion, but then in the next appointment lectured me for getting hung up on semantics when I ask for clarification about it again because, for some reason, she started referring to it as concussion in that appointment. I have this recorded, I'm not joking. My husband recorded both sessions to help me with comprehension and remembering. He said, "I am so glad I have that recorded because that was unbelievable."
It is sad how hard it is to find good providers to help you understand and navigate brain injury. It is terribly sad and rather disturbing that too many providers who claim to be experts on the subject or claim to know how to help are bias, discriminatory, and judgmental themselves toward us...
I am glad to have found Dr. Sweet and I am glad to finally know what happened and what was and is really going on with my head. It was not a concussion, the location of the injury explains a lot, and a lot of what was being denied by the the Intermountain Neuroscience Institute. the Neuroscience Institute, brain specialists, who never even ordered an MRI or anything else when they absolutely should have considering my history, my job as a snowboard instructor, and the evidence of symptoms that were manifesting so many times while I was under their care.
... and some words repeat in my head "do good to those that spitefully use you"
Nothing comes from the malpractice path they push you down so maybe I will have to find some other way to educate and inform those that spitefully used me there. They absolutely deserve to loose licenses; and not because of me, but because of how they treated and handled me, because of their actions. They absolutely should be shut down for handling any patient the way the handled me... But I see this is not going to happen. So, then, how does one help them see what they absolutely need to see in order to help and not harm other people like me?
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