From Liz
Mom, don't you understand that I am committed with rules and regulations that if I don't obey they will increase my stay, my time, my life will never be my own. I am to participate and comply and obey and yet because they cannot get my medications filled it can be my demise - once again - and I will not let that happen because of medication. I did that once because I did not understand, but now I do. I lost my life and my will to live not understanding my medication and what it can do, that it can curl my fingers and toes and scrunch up my stomach so I cannot eat if the helping pills are wrong in dose or type so what I thought could help can hurt. I cannot unravel myself again. I have worked too hard to rebuild from nothing.
Yet without the medications to sleep how will I not pace, how without sleep will I participate in groups and activities the next day. You wonder why I worry and and am full of anxiety - it is my life they take - when I cannot take my perscription because it is unavailable. And I have heard it before, that they understand, but they dont't. They will judge me. They always do. On behaviors I may be unable to deal with and so I would rather risk fighting to get what I need than lose what I have gained.
I have been taught to be compliant - med compliant. To obey the hospital where they taught me how, and when, and how much, to mould my mind to even and without this prescription filled I cannot be - the me - they desire and want for me to be free.
Red tape and government rules I cannot scale without your help. I need a conference call between my doctor, and you, and the pharmacy. I will even pay for the meds myself to remain compliant. How can I prove myself if I cannot have the tools I need to do the job they require?
I am writing lyrics again mom, for the silent voices of fetal alcohol, I will fight the fight.
2 comments:
Thank you, thank you, thank you! I am a 33 year old survivor of FASD. I am fairly high functioning and yet there is so much that I struggle with on a daily basis. I have two beautiful children and when people ask me, why don't you_________ and insert some topic that I should be able to do I feel so inept. I love to write but I am terrible at math and basic cognitive skills. I hurt all the time, but not enough to do anything about, thank God for seizure medication! The neurological effects are terrible. Thank you so much for your courage! I did not even know there were people out there speaking out for people like us that are adults. That treat us as if we are human and not as if we are some monster that should be kept locked in a closet. God Bless you!
Thank you for your kind thoughts - we just have to keep making noise with kindness until people finally understand. Say your truth - that is all you can do. Liz
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