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All good thing some to an end – Spoilered

Question:

Going to spoiler just in case it gets heavy.  Talk of my life, – Hide quoted text — Show quoted text -

I’m tired, suffering insominia badly.  I don’t know if ppl are aware that I’m chronically- terminally ill with systemic-discoid lupus.  It’s an autoimmune disease that is attacking my main organs.  It’s a painful nasty disease that I acquired from the administration of Thorazine some years ago for a psychotic process I didn’t have.  I guess I was genetically predisposed and had the fuel and the medications given to me at Crisis Units, doctors, nurses, etc. was the match to start the ending of my life.   I think if ppl knew that this was why I am sick and that this is why I don’t care to have professionals in my life feeding me their *stuff*.   doesn’t matter anymore, I won’t be here for very much longer.   I had an incident last Friday where I lost control of my anger and punched a fridge and threw a glass, all in front of my daughter.  Well, I blew it.  I lost control, probabl bc I work so hard to keep in control that I blew (the trigger was my daughter’s father not picking her up for visit and leaving me hanging for 4 hours.  I blew.   Last year, my son moved out to be with his father and now, my daughter says she wants to go to bc watching me die is too hard.  I can’t blame her, it is hard.   There was something more but I forgot it, oh you know that saying "If you love something, set it fee.  If it comes back, it’s yours.  If it doesn’t, it never was"?  I keep thinking about how ppl in my life do that…husband, therapist 1 & 2 & now 3, all of my friends who seemed to need me but when I was needing they were no where.  You know fair-weather friends.  There’s my son and now my daughter.   Everyone I love and cherish letting go bc they want to go and they’re not coming back.   Life for me held some value at being a mom.  I can’t work, hardly play andafter my son left, it was hard but I had my daughter to look after and be a mom to, be the kind of mom I am.  And now there’s this nothing. Everyone is walking out of my life and I can’t stop them.  After she’s gone and everything is settled in paperwork and changing schools.   There’s nothing to sustain me anymore.   Sierra

Response:

Sierra, I’m just going to comment up here, having read your post. This is awful. Wow. My heart goes out to you. I wish there was something I could offer in the way of comfort. I really don’t know what to say, or what anyone can say in this kind of situation. Do you have anything to sustain you? You say not. But can you continue to be the very best mom that you can be, even with your children at a distance? I think there’s still much that you can do for them? I think they still need you, even if they’re not with you?  I think there must be something because you continue on your healing journey. Surely that takes faith in yoursself and in the meaning of your life. I wish you well. If there’s anything that I can give or do, please say. Lionheart – Hide quoted text — Show quoted text – Going to spoiler just in case it gets heavy.  Talk of my life, I’m tired, suffering insominia badly.  I don’t know if ppl are aware that I’m chronically- terminally ill with systemic-discoid lupus.  It’s an autoimmune disease that is attacking my main organs.  It’s a painful nasty disease that I acquired from the administration of Thorazine some years ago for a psychotic process I didn’t have.  I guess I was genetically predisposed and had the fuel and the medications given to me at Crisis Units, doctors, nurses, etc. was the match to start the ending of my life.   I think if ppl knew that this was why I am sick and that this is why I don’t care to have professionals in my life feeding me their *stuff*.   doesn’t matter anymore, I won’t be here for very much longer.   I had an incident last Friday where I lost control of my anger and punched a fridge and threw a glass, all in front of my daughter.  Well, I blew it.  I lost control, probabl bc I work so hard to keep in control that I blew (the trigger was my daughter’s father not picking her up for visit and leaving me hanging for 4 hours.  I blew.   Last year, my son moved out to be with his father and now, my daughter says she wants to go to bc watching me die is too hard.  I can’t blame her, it is hard.   There was something more but I forgot it, oh you know that saying "If you love something, set it fee.  If it comes back, it’s yours.  If it doesn’t, it never was"?  I keep thinking about how ppl in my life do that…husband, therapist 1 & 2 & now 3, all of my friends who seemed to need me but when I was needing they were no where.  You know fair-weather friends.  There’s my son and now my daughter.   Everyone I love and cherish letting go bc they want to go and they’re not coming back.   Life for me held some value at being a mom.  I can’t work, hardly play andafter my son left, it was hard but I had my daughter to look after and be a mom to, be the kind of mom I am.  And now there’s this nothing. Everyone is walking out of my life and I can’t stop them.  After she’s gone and everything is settled in paperwork and changing schools.   There’s nothing to sustain me anymore.   Sierra

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Response:

Sierra, I’m really sorry to hear about all of this. It’s good that you could write about it and connect with people. I hope you will get lots of support here. Thinking of you and sending you lots of support and comfort. Primrose writes – Hide quoted text — Show quoted text -Going to spoiler just in case it gets heavy.  Talk of my life, I’m tired, suffering insominia badly.  I don’t know if ppl are aware that I’m chronically- terminally ill with systemic-discoid lupus.  It’s an autoimmune disease that is attacking my main organs.  It’s a painful nasty disease that I acquired from the administration of Thorazine some years ago for a psychotic process I didn’t have.  I guess I was genetically predisposed and had the fuel and the medications given to me at Crisis Units, doctors, nurses, etc. was the match to start the ending of my life.   I think if ppl knew that this was why I am sick and that this is why I don’t care to have professionals in my life feeding me their *stuff*.   doesn’t matter anymore, I won’t be here for very much longer.   I had an incident last Friday where I lost control of my anger and punched a fridge and threw a glass, all in front of my daughter.  Well, I blew it.  I lost control, probabl bc I work so hard to keep in control that I blew (the trigger was my daughter’s father not picking her up for visit and leaving me hanging for 4 hours.  I blew.   Last year, my son moved out to be with his father and now, my daughter says she wants to go to bc watching me die is too hard.  I can’t blame her, it is hard.   There was something more but I forgot it, oh you know that saying "If you love something, set it fee.  If it comes back, it’s yours.  If it doesn’t, it never was"?  I keep thinking about how ppl in my life do that…husband, therapist 1 & 2 & now 3, all of my friends who seemed to need me but when I was needing they were no where.  You know fair-weather friends.  There’s my son and now my daughter.   Everyone I love and cherish letting go bc they want to go and they’re not coming back.   Life for me held some value at being a mom.  I can’t work, hardly play andafter my son left, it was hard but I had my daughter to look after and be a mom to, be the kind of mom I am.  And now there’s this nothing. Everyone is walking out of my life and I can’t stop them.  After she’s gone and everything is settled in paperwork and changing schools.   There’s nothing to sustain me anymore.   Sierra

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Response:

oh seirra i am so so so sorry i dont know what to say i hope she changes her mind you are a very strong person and i see your postings alot,and appreciate our interactions i wish i could help, you do so much for others with your writing here i hope you know that and that you are appreciated love caroline – Hide quoted text — Show quoted text – Going to spoiler just in case it gets heavy.  Talk of my life, I’m tired, suffering insominia badly.  I don’t know if ppl are aware that I’m chronically- terminally ill with systemic-discoid lupus.  It’s an autoimmune disease that is attacking my main organs.  It’s a painful nasty disease that I acquired from the administration of Thorazine some years ago for a psychotic process I didn’t have.  I guess I was genetically predisposed and had the fuel and the medications given to me at Crisis Units, doctors, nurses, etc. was the match to start the ending of my life.   I think if ppl knew that this was why I am sick and that this is why I don’t care to have professionals in my life feeding me their *stuff*.   doesn’t matter anymore, I won’t be here for very much longer.   I had an incident last Friday where I lost control of my anger and punched a fridge and threw a glass, all in front of my daughter.  Well, I blew it.  I lost control, probabl bc I work so hard to keep in control that I blew (the trigger was my daughter’s father not picking her up for visit and leaving me hanging for 4 hours.  I blew.   Last year, my son moved out to be with his father and now, my daughter says she wants to go to bc watching me die is too hard.  I can’t blame her, it is hard.   There was something more but I forgot it, oh you know that saying "If you love something, set it fee.  If it comes back, it’s yours.  If it doesn’t, it never was"?  I keep thinking about how ppl in my life do that…husband, therapist 1 & 2 & now 3, all of my friends who seemed to need me but when I was needing they were no where.  You know fair-weather friends.  There’s my son and now my daughter.   Everyone I love and cherish letting go bc they want to go and they’re not coming back.   Life for me held some value at being a mom.  I can’t work, hardly play andafter my son left, it was hard but I had my daughter to look after and be a mom to, be the kind of mom I am.  And now there’s this nothing. Everyone is walking out of my life and I can’t stop them.  After she’s gone and everything is settled in paperwork and changing schools.   There’s nothing to sustain me anymore.   Sierra

Response:

To Members, I want to thank all who read and responded to my post.  There is a commonality in the responses….a lot of caring (thank you)….and a lot of ppl feeling helpless and speechless.  I understand, feel that way about myself a lot too. – Hide quoted text — Show quoted text -

When I post about things as consumer-client assertion to know more about t’pist’s than the paper credential(s) that hang on the wall or the business card that’s handed to you (us) with letters after the name and a licensing number indicated/honored by the state and anything else in the same vein….hospitals, clinics, whatever…….I am asking that you *not* view yourself as helpless and that you *not* go speechless.  I am perhaps, the worst-case scenario of mis-diagnosis and treatment ending up fatal……that doesn’t mean that there aren’t a lot of other tragedies between benign and fatal that are just as important.  Case in point: someone here who suffers agonizingly from tardive dyskinesia from the administration of Haldol, another neuroleptic. So what I’ve learned, I am passing on it’s value so my life was not in vain.   What happened and is happening to me is bc of the widespread division in the mental health field about whether or not DID is real.  This non-belief is present and prevailing, and it will be this way for a very long time to come.  In crisis and/or ongoing treatment using neuroleptics as Haldol, Thorazine, Mellaril, Stelazine, Resperidol, and many, many others are a *roll_of_the_dice* each and every time that it is administered.  There are no guarantees that there won’t be short and longterm repercussions.  When I was given them, I was lead to believe that the medication(s) would cease the voices, they didn’t…I was lead to believe that the body twitches and facial ticking, photosensitivity, dry mouth, rashes and more could be countered and remedied by other agents as Cogentin and Artane.   Well, I’m living, or is that dying proof that this is not always the case. (I think I’ll go put in spoiler for this stuff, just in case). What TribalNation’s t’pist and I are currently facing is this problem… She accepts and works with the diagnosis of DID and for non-crisis moments, there’s not too much problem to ongoing care.  You all know of Shadow (a s**c*d*l tribal member) who’s only focus is the *s* word.  Now, what happens when there’s a need for hospitalization…..t’pist has no hospital privileges, therefore has no, none, zippo assertion of her diagnosis and treatment plan – the hospital’s doctor does and asserts his/her own.  If this is a doctor who doesn’t accept/see DID, I (you) won’t be treated DID but are more likely to be treated as an acting out Borderline or relapsed psychotic, hence the administration of neuroleptics.  Hec, maybe even with an acceptance of DID by the doctor, I (you) may get fed neuroleptics.  Why?!  Why are DID’s and other DD’s being given antipsychotic medications when we’re not psychotic?  Does anyone here know exactly what it’s to remedy or treat that a small dose benzodiazapine like Ativan, or other anti-anxiety med like Xanax, Elavil, etc. couldn’t do the same? My t’pist and I are trying to figure out how to remedy the loophole we see between her treatment and others who may have to be involved…we came up with preplanning.  To find a doctor who will oversee any and all hospitalizations to oversee that my care is not reflective of standard treatment of Borderlines and psychotics, hence no neuroleptics and to find one whose hospital staff is also in recognition of DID and one who will allow my t’pist to continue her treatment of me and not override it.  Tall order.  Or I could fire her and hire one who has hospital privileges and thus, a higher probability of my receiving a continuity of care in both inpatient and outpatient.  Okay that’s settled, phew!!!!  Nope.   Can’t forget insurance.  I’m on Medi-cal, so *pls take what you can get* is suppose to be my lot and I’m to be grateful that if what it will provide is little to no power of my own to initiate and maintain the quality of care that I deserve and desire. I’m going to close with this….pls. stay aware of ignorance out there.  Just bc your t’pist accepts you as an outpatient client doesn’t mean the care you may receive inpatient is going to be the same…chances are it won’t unless you’ve managed to enter an exclusive DID/DD hospital-clinic (and maybe not then either).   Neuroleptic medications in general are not benign drugs but seriously altering to one’s mind and body.  Are they appropriate for the treatment of DD’s?  I don’t believe that they are.  The use of neuroleptics in clinic-hospitals around this country (USA) is widespread and it is common to use them with s**c*d*l and/or combative ppl as a means to rapidly put them down, maybe even keep them down.  It is distressing to see.  I’ve watched this happen countles times to others and to myself.  I have no doubts that others have different experiences, ones that are/were pleasant and I am thankful that you received that quality of care.  From my perspective, It is not an issue of what is right nor wrong, but what works for the client, the person.  No one has the right to administer any medication or treatment that even remotely has the chance to be fatal.  If anything, they should have informed and let the patient-client decide for themselves.  Do your homework before taking these medications.  Talk to the pharmacist’s, they actually know *more* about these medications than your doctor.  This last fact is not hype, it’s the frightening truth. Sierra

Response:

Dearest Sierra – Hello.  I don’t remember if I have introduced myself – I am Beauty.  I have been reading your posts recently, after an absence from asd. Sierra – I only want to say that I am thinking of you with thoughts of strength and peace.  I thank you for sharing what is going on for you.  I am glad you are writing and sharing.  There are no doubt many more people than you know, here at asd and probably elsewhere too, who care and who value what you give.  That probably doesn’t help the feelings you speak of in regard to your daughter’s plan.  But please know that we are with you.  We do care. With warm thoughts, inadequately expressed – Beauty – Hide quoted text — Show quoted text – Going to spoiler just in case it gets heavy.  Talk of my life, I’m tired, suffering insominia badly.  I don’t know if ppl are aware that I’m chronically- terminally ill with systemic-discoid lupus.  It’s an autoimmune disease that is attacking my main organs.  It’s a painful nasty disease that I acquired from the administration of Thorazine some years ago for a psychotic process I didn’t have.  I guess I was genetically predisposed and had the fuel and the medications given to me at Crisis Units, doctors, nurses, etc. was the match to start the ending of my life. I think if ppl knew that this was why I am sick and that this is why I don’t care to have professionals in my life feeding me their *stuff*. doesn’t matter anymore, I won’t be here for very much longer. I had an incident last Friday where I lost control of my anger and punched a fridge and threw a glass, all in front of my daughter.  Well, I blew it.  I lost control, probabl bc I work so hard to keep in control that I blew (the trigger was my daughter’s father not picking her up for visit and leaving me hanging for 4 hours.  I blew. Last year, my son moved out to be with his father and now, my daughter says she wants to go to bc watching me die is too hard.  I can’t blame her, it is hard.   There was something more but I forgot it, oh you know that saying "If you love something, set it fee.  If it comes back, it’s yours.  If it doesn’t, it never was"?  I keep thinking about how ppl in my life do that…husband, therapist 1 & 2 & now 3, all of my friends who seemed to need me but when I was needing they were no where.  You know fair-weather friends.  There’s my son and now my daughter. Everyone I love and cherish letting go bc they want to go and they’re not coming back. Life for me held some value at being a mom.  I can’t work, hardly play andafter my son left, it was hard but I had my daughter to look after and be a mom to, be the kind of mom I am.  And now there’s this nothing. Everyone is walking out of my life and I can’t stop them.  After she’s gone and everything is settled in paperwork and changing schools. There’s nothing to sustain me anymore.   Sierra

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Response:

Thank you for responding, Someonelse.  It’s okay that you shared about you.  I appreciate your honesty about how you handle pain.  Sierra – Hide quoted text — Show quoted text – I agree with Primrose; being able to write about it and  reach out to ppl here is important and your ability to do that is, to me, amazing.  I’ve been a "fair weather friend", i do the self preservation thing when I realize that another person’s pain is going to trigger too much of my own; I vamoose. On the other hand, I am convinced that if anyone knew my sh*t they would do the same to me, which is probably what sets off that cycle. Reading this ng has been a lesson in the value of, and possibility of connection.   I also have on and off through my life battled with life threatening illness, and know how hard that is for people to be around. And know how it feels to want people around, but for me I also wanted to not have to take care of their pain in dealing with my illness.  If you find you want to talk about some of those issues and can’t find anyone to listen, please write. I’m here. I want to scream and stomp and throttle the people who gave you that medicine erroneously.  (But I’d never think of fighting back or suing for my paralyzed vocal cord, or the other damage inflicted on me in the process of life saving surgery.) I hope what I’ve written hasnt been too focused on me to be of help to you; but please know how much I value your post. It let me get in touch with this stuff in a way that rarely happens. It also was a deeply felt cry of anguish, and I heard it, and I care. (me) writes Going to spoiler just in case it gets heavy.  Talk of my life, I’m tired, suffering insominia badly.  I don’t know if ppl are aware that I’m chronically- terminally ill with systemic-discoid lupus.  It’s an autoimmune disease that is attacking my main organs.  It’s a painful nasty disease that I acquired from the administration of Thorazine some years ago for a psychotic process I didn’t have.  I guess I was genetically predisposed and had the fuel and the medications given to me at Crisis Units, doctors, nurses, etc. was the match to start the ending of my life. I think if ppl knew that this was why I am sick and that this is why I don’t care to have professionals in my life feeding me their *stuff*. doesn’t matter anymore, I won’t be here for very much longer. I had an incident last Friday where I lost control of my anger and punched a fridge and threw a glass, all in front of my daughter.  Well, I blew it.  I lost control, probabl bc I work so hard to keep in control that I blew (the trigger was my daughter’s father not picking her up for visit and leaving me hanging for 4 hours.  I blew. Last year, my son moved out to be with his father and now, my daughter says she wants to go to bc watching me die is too hard.  I can’t blame her, it is hard.   There was something more but I forgot it, oh you know that saying "If you love something, set it fee.  If it comes back, it’s yours.  If it doesn’t, it never was"?  I keep thinking about how ppl in my life do that…husband, therapist 1 & 2 & now 3, all of my friends who seemed to need me but when I was needing they were no where.  You know fair-weather friends.  There’s my son and now my daughter. Everyone I love and cherish letting go bc they want to go and they’re not coming back. Life for me held some value at being a mom.  I can’t work, hardly play andafter my son left, it was hard but I had my daughter to look after and be a mom to, be the kind of mom I am.  And now there’s this nothing. Everyone is walking out of my life and I can’t stop them.  After she’s gone and everything is settled in paperwork and changing schools. There’s nothing to sustain me anymore.   Sierra

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