Writing to save my life
My visit to the neurologist proved to be traumatic and destructive. On my way out, hysterically crying and kicking the elevator of the hospital I frantically dialed Baylissa's telephone for reassurance. I was pleasantly surprised that she answered only to reassure me. Thank god for her work.
The neurologist seemed determined to scare me, and good.
She said my akathisia could be permanent. It wasn't directly from a benzo ( I had initially had it post steroid and when I started an SSRI for a day but it went away 3-4 days later) and that "you don't have a healthy brain so this can be permanent". Over and over again she talked about my "unhealthy brain", my genetic predisposition towards this due to family members experiencing akathisia and also the length of duration that I have had it. The longer you have it the harder it is for it to go away is her stupid opinion.
I reached out to a fellow benzo friend whom I trust and she told me to discard this information.
I honestly believe sans akathisia I can manage almost anything.
She recommended a spinal tap and also being evaluated for the seizure like activity I am having.
This is why I don't want to go to doctors.
I lowered my expectation for the visit, and didn't think it would be productive but I didn't think she would be willfully cruel to me.
She kept questioning and testing me "What do you do all day?:" "what do you mean you can't walk well, why not?". I felt diminished. I kept my calm and bowed to her ego. This is at a large teaching hospital in the area and if I talk back I am screwed. So I surrendered. She proceeded to tell me she was a big so and so at another hospital on the east coast and just arrived to LA.
I remember reading Indigo's story on BB and he talked about a wonderful neurologist and healer that saw him through recovery, after multiple others telling him " he was doing this to himself".
The prickling and head pressure has been so intense. I feel certain I am dying. Maybe it's the benzo die lie, maybe it isn't. Doors feel like they are closing. I am going to close the door to my heart and focus on the select few that I can lean on.
As Jennifer Leigh writes, people who are not in this or who have not been in this cannot possibly comprehend it's horror. There is no way I could have.
The sheer terror, the insane heart, lung, head, stomach, anxiety, blackness etc etc etc issues.
I feel like my mind is so ready to be well and get on with my life to help others. My body will sadly not cooperate.
I have to pull myself up and keep going. I don't know what the future brings.
I want to believe that the body and brain can heal. Why couldn't this heal?
To have multiple doctors say things like " you aren't going to make it" " You don't have a healthy brain" is discouraging beyond words that I can describe. I know this is a long road. I am burning throughout my entire system. The doctor of course was turned off because I brought in some blood work that I hoped she could do first to save me from doing the spinal tap she recommended. I had something going on before this. I was certainly not like THIS but I had some virus or something knock me off my feet two years ago. I am determined to figure it out and to get well. I was meant to be healthy and free of debilitating pain.
Baylissa said she had seizures as do many others.
I want to believe these episodes are not permanent but the process of the brain healing.
Monica Cassini was in a bed for several years getting off meds in this process.
I don't know if I have it in me to withstand the akathisia as some have for years, with children, with responsibilities. How is one expected to cope with this level of iatrogenic illness?
It is true what Jennifer Leigh wrote on her recent blog. Many friends, family, many many people just scatter away. The ones that are left are the ones that really matter, the ones that have dug deeper to try to understand this injury and this madness.
Tonight I choose to discard and ignore the words of that woman.
She is one person. One doctor that needed to fluff up her feathers in the office with me and make me small.
There is kindness out there, we just have to keep picking ourselves up and seeking it out.
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Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.