Roll Call 14

You're fighting everybody....when you go to a doctor it's not like you're somehow doing them a favor by going ...you are going to them because you are asking for help. They have 4 years of college 5 of med school and another few of residency/fellowship and whatever job experience after that. When you visit them you are asking for their expertise and help. If you don't listen to their advice by not taking the meds they choose then you are fighting them you are saying that you know more than they do....that you don't really need the meds. If you are hallucinating it will be a general consensus among everyday people and doctors that you need the meds and you are saying that you don't that is fighting. Now you do have choices basically on the type of med. You're probably stuck with injectables due to non-compliance but there are a few of those to choose from. If haldol is horrible for you you can change to an injectable risperidone or abilify but your choice is not no meds unless you want to leave the system. There is no point in having a pdoc if you won't listen to them.

i honestly dont want a pdoc or to goto a psychiatrist but i do it to keep my disability and partially to not end up back in hospital. i left psychiatry for two years before in the past and did partially well.

but thats not the point. im trying to understand here. and im trying to have some humility ok? like im really trying.

so she called me back but still didnt sound happy. turns out she wants to see me RIGHT NOW for an injection. so im leaving.

but your right SometimesP. your right. i cant deny that. and i know you all want to help me.

I'm going to have to reread the posting again. I was upset when I read it before. I must have missed something. Thanks for your help

So basically you are trying to cheat the system and you want help doing that? Good luck....

OK so society came up with the idea of disability because they care about people---people who are too sick to work. If you had a physical illness that would be it you would simply not work but there is no chance you would ever get better and you have to live with that fact every day. Mental illness is different---there is a chance of recovery, but even if not that there is the chance to harm someone else. I am sure the primary reason they require you to see a psychiatrist is so you don't harm someone else, people are afraid of the mentally ill. However, you have mentioned being homicidal here before. If you are feeling that way at all---you need meds---this is not a normal thought process, it does not just cross your mind that maybe you should kill someone. Meds only work if you stay on them for a while. People aren't giving you free money simply because you exist but in exchange for taking care of yourself. That's how disability for mental illness is different than physical. If you can't take care of yourself you will end up locked up somewhere so that you don't hurt someone else or yourself. There are several mechanisms for this---first the hospital---then longer term hospital---then jail. It all depends on whether you're just thinking about something bad or actually do it at some point. When you visit the pdoc they have an actual responsibility to make sure that you don't hurt someone else or yourself----they have basically two ways to do this---meds or therapy. Therapy has been deemed ineffective for psychosis---its nice, it makes you feel better about yourself but it doesn't work on psychosis or at least has minimal impact. So that means they have one choice and that's meds. Now I know that it's stupid because meds don't even work on like a third of people but if you were a pdoc and you could be held responsible if your patient did something terrible and you really only had one treatment choice---medicine--- then what would you do....you would prescribe meds to cover yourself whether they work or not. What Costello and I are saying is there is another choice----recovery. The meds are having some impact for you even if it is small. There is a chance that you could recover and go down on the dose of the meds or even off entirely. In order to do this you need to rethink why you are going to the doctor. If you are only going to remain on disability it is going to bite you in the butt at some point. The doctors are not stupid---you can only pretend for so long----if you aren't truly motivated to try to get better they will eventually get tired of seeing you. I don't know how it is for you but here in Chicago the doctors tend to know each other and having gone to one of them and being dismissed may lead to others not taking your case. We actually have a shortage of good psychiatrists---neither of my two psychiatrists is accepting patients right now, I only got the second because of a good referral from the first. Eventually you will run out of good will if you keep aggravating and burning through doctors. Doctors want 2 things---1 to keep you from hurting yourself or others---that's critical----2 to help you get better. You pretty much have to give them the first or they will find a way to make you, you have an option with the second, but it is in everybody's best interest that you get well if you can. If you recover then you start to have actual choices of meds or no meds but in a way that society can accept. You might even have a chance at school or work instead of or in addition to disability. So what I think we are saying is rethink how you are approaching the medicine---it is there to help you not to take things away from you. Yes there are side effects---I couldn't read fiction for 2 years and I love to read----but you need to find a med that you can tolerate because this is a long term process----You're going to get the meds for reason number 1---harm but why not make the process about reason number 2---recovery?

Its not like you can just pretend you aren't hearing the voices either---if that were the case then you wouldn't need disability----so basically your only option is meds and the choices you have are what med and whether you choose to see that med as a path to recovery or just a means to get disability.

https://www.healthcare.gov/exemptions/
here it is again...

i take the meds to stay out of the hospital. which is to help myself. please dont accuse me of cheating the system. because im not cheatig the sysstem. i take my meds i just dont like the side effects because i cant do anything on them.

i got my injection and they upped it again. so why dont everyone say how right they were. ok?

Ok if its your decision to take the meds to stay out of the hospital then that's OK but I thought you were saying that you just took them to stay on disability---that's entirely different. I understand about not liking the side effects---if you were able to work and support yourself you would have a choice in whether you take them at all if you could blend into society without people knowing. If you recover enough to be off of them you will have a choice. What I'm saying is that by accepting disability you are making a deal----you don't have to be on disability no one is forcing you to take the money. But you chose to accept the deal, now you have to live by the rules---see a doctor----what that really means is be on meds if they think you need them. If they think you are ill enough for disability then they are by definition going to think you need meds. The only realistic option out is to change the system itself---but as most people are afraid of the mentally ill it will take a lot to change the system. Your best bet is to give it another try at recovery. If you don't want to be on the meds I absolutely support that---I don't believe in forced medication---however that would break the deal for disability so you will lose that. Decide what you want to live with---side effects or no money. Pick one and make an effort to stick with that choice it will make your life a lot easier. I don't think its fair or reasonable but it is the way the laws are currently set. Personally I would support disability for people with no treatment because it is less coercive that way---but its not up to me----the laws are already in place.

Sometimes & Costello I think you have made some very good points in your posts. However, I don't know Newtus personally. I only know her online. She lives in a very small town about an hour or so away from me. I know the area very well. The choices we have here in our area for mental health care aren't that great. I know this from my own personal experiences with myself and two family members. I agree that a person must work very hard and desire to recover. I've been there and done that myself. Although I am not "well" I manage to function in my life. For that I am very blessed. I don't think Newtus "doesn't" want recovery nor do I think she wants to "cheat the system". I think the reason she feels like giving up is because she feels that the mental health system she has available in her area isn't listening to her. I think because of where she lives she doesn't have the option to seek better pdocs, and therapy. And from Newtus posts she has said that she has zero family support. She lives with an older alcoholic father who has his own problems. He can't help her get better if he can't help himself. And her mother isn't around to help her either. I think Newtus is crying out for that nurse to understand that the injectable medication that they are forcing her to take is not giving her a "good quality of life". If the medicine isn't working and only making things worse for her then they should not continue to force something into her body that isn't working. In my opinion I think this is what pushes her to want to drink the alcohol and to want to discontinue her medication. I don't think Newtus wants to just "not comply". It sounds to me like she has some very serious issues with the medication and they continue to up the medicine and force her to take it by injection. What better way to shut her up by over injecting her with a horrible medication that is taking away the "quality of her life". She is still hearing voices even on the medicine. She still has the same flipping problems on that medication as she does off of it. So why force her to continue that injection if it's making things worse for her? I think Newtus would jump at a chance to see a "good" pdoc and a "good" therapist if they would listen to her. In my experience with the mental health care in our area they just want to fill you full of medicine, shut you up, and send you on your way. I have experienced this myself with my own daughter! Just because a person has a mental illness does not mean that they should not be listened to. They should not be treated rudely or told they have no chance at going to school because they "aren't stable". Maybe they should listen to Newtus and get to the root of the problem to understand why she behaved the way she did. I of course wasn't there so I have no clue how she behaved with her nurse. But I think she behaved this way out of anger and frustration. When someone continues not to listen to you and they force you to be injected with a medication that ruins your "quality of life" you get angry! You flip out because you are so freaking tired of going down that same damn road and getting the same terrible results. I think Newtus wants to recover she wants to have a better life. I don't think she should just shut up and do what they tell her if it's not working. I think they should open up their ears and really listen to her. I think she had every right to stand up for herself! And look how they reacted....they raised her horrible injectable medication once again!
Did the nurse do this because she was pissed off at how Newtus reacted towards her? I believe she did! I believe they want to focus on her reaction instead of her words. They see her behave as an "unstable" person. If they have all the education like you mentioned in your post then shouldn't they be smart enough to figure out that her "unstable" behaviour is due to being forced to take the injection? Shouldn't they get to the root of the problem instead of continuing to force the injection on her? I don't think Newtus wants to respond "unstable" to the nurse. I think she is crying out loudly to be heard and all they want to do is tranquilize her! I think it's wrong and I am sad for Newtus that she is forced to go through this. And have "no quality of life".

People in mental health can be terrible, just nasty. My psychiatrist is not what I want and when a psychiatrist says "You get no disability" or "I'm not taking you off of your meds" it really hurts especially if it's a ridiculous amount of haldol and it's not even working for her. When that happens, you just do what is right and trust me many psychiatrists have no clue what they are talking about.

----------------

Latuda - My cousin says its the best med she has taken. Any comments on it?

I wish socializing wasn't so damn difficult for me. I just spent some time with a friend, and now I'm completely exhausted. It's not the socializing itself, that I can do... but the toll it takes on me is huge. I guess I'm more introverted than I thought.

Oh and I just threw up. Apparently I'm sick, because I'm still nauseated and just feeling so physically exhausted. I hope it's not the flu but it's looking like it might be. Ugh.

You mean they upped it over the 100 mg?

Oh I am so sorry! I hope and pray that you don't have the flu!!! Have you had a flu shot?

I haven't, I'm kinda nervous. I'm so flipping tired. It's insane. I slept well last night so this really shouldn't be happening. I just don't feel well at all.

Oh no! I didn't even know they would up it.... that's so horrible.

AD: I hope you're not sick. Maybe take a nap and you'll feel better.

they didnt up the milligram but upped how many times i would get it. so apparently ill be getting it more often than every 4 weeks.

that article was basically going both ways. the research basically said that it either could or couldnt happen. so i think its worth trying. and close management to discover if symptms arise and take action to fix it quickly. this is what my pdoc and T and me have been doing. i hope ur son doesnt relapse and can live without meds or lower doses. i have the same hope for myself

edit
and it is scary its very scary but i think its worth a try. just have to have a safety net. i think.

Thanks. I hope that's what he has in mind. Maybe that's why he's asked me to attend the next appointment - to see if I'm up for helping. I am, and I just hope the dose will be lowered very slowly. He's only on 2.5 mg right now. That's the smallest pill. So if we have to resort to cutting it into smaller pieces we're probably looking at a 25% reduction in dosage.

It is really, really scary. I hate the thought of relapse, because my son is so angry and so lacking in insight when he's in an episode. He's promised he'll go up again if it doesn't work, but sometimes when they lower the dose, he feels so much better, but he's making everyone around him miserable. I guess we have different definitions of "doing better."

YES i live in a freaking town with 400 people. they dont have the options that a CITY like dallas has where every other 10 or so miles is a clinic or a hospital or a doctor. i have to go OUT OF TOWN to see ANYONE. and the MCKINNEY if Cracking knows is small TOO so theres not much there anyway. so i also have to goto PLANO. (if cracking knows) and even there is just as much as mckinney.

i know everyone doesnt know where im tlaking about and isnt familiar and only cracking prob is. but basically its not in my ability financially to goto dallas.

first of all the nurse and doc dont want me driving and if THATS how its gonna be. even though sometimes yes i cant drive THEN i dont have the ABILITY in TIME to go anywhere but this next rural small town.

yes im not trying to cheat the system i swear to god. i promise with all my heart.

thank you. and i mean THANK YOU. thank you for seeing this as i see it.

and ive tried too yea. i dont have much choice in who i see around here. it makes it worse on medicare. very much worse.

i was on 3 mg risperdal and we lowered it by .5 every 2 weeks. im on 2 mg right now exept i had a brief episode and we put it back to 2.5 for a time. because i take the risperdal shot too and it wore out before i could get the new one. it was my fault really. but anyway. yes go slow. and i bet its scary for u because hes ur son and u dont want to see him go psychotic again. but i would ahve an open dialouge with your son to see what symptoms start to happen first and how u both can be alerted to them if they come up. because it happens in stages. for me at least. i dont know about ur son.

basically everything that i did in my behavior has been resolved. they said they realize its the illness and that im going through some rough stuff. but they STILL upped the medicine. so im not getting more MILLIGRAMS but getting it more OFTEN which is like upping the milligrams in the month basically.

work with me here.
im torn by this. i can barely get out of bed to do anything on this meds for 2 weeks of the month. and now im getting it twice a month.

they just wont listen. and ive compromised with them. or TRIED.

if i cant do anything but sleep on this high meds than how am i supposed to live. im being drugged so much. and it would be weird if no one saw what was happening to me.

they want to put me out physically and says thats a "con to the meds thats acceptable" yet expect me not to be mad because i cant do anything in life. its not like im on a 1 or 2mg tablet. im on 100mg of haldol injectable. twice a month now.

they dont even want me to goto school.
they said:
no driving
no going to school
no getting a job
but they say do something with my time. theres only SO MUCH i can do PERIOD - while drugged. and at THAT they dont want me to do a lot of that stuff.

Thanks for this---I'm generally aware of her life situation---it is incredibly difficult and I would struggle given the same situation. What I was trying to explain was the point of view of her doctor and society. It is not necessarily a view I agree with but unfortunately it is the reality. The reality is it does not matter that these meds do nothing for her or make a marginal difference at best---the doctors have essentially one form of treatment for psychosis---all the treatments that work inhibit the D2 receptor and then they inhibit various other receptors as well. The only other mechanism is clozapine which is also a minor D2 antagonist. So if I were an MD and I got a new patient who was both psychotic and potentially suicidal---I have to fix her because she might hurt herself and as a doctor I would be legally bound. I know that Newtus has tried nearly every medicine out there----at least all of the atypicals so why not try a typical like haldol. Perhaps she's not recovering because of non-compliance? Well then it needs to be an injectable. The problem is what do you do when people don't respond to treatment? Personally I think they should be allowed to discontinue treatment but I doubt any pdoc would allow that---if I were an MD I would have zero incentive to leave any patient unmedicated because it would put me at risk legally. Switching meds is OK but a med must be used or it looks like I'm not doing my job. Pdocs are for meds---that's all they do. Its not that I really think she is consciously trying to cheat the system but that disability is a deal with the devil. In order to accept it you must make concessions it does not come without strings, one of those strings is seeing a doctor---as I said above a pdoc implies meds, that's all they know how to do.

Newtus I'm not trying to tell you that you're wrong with the way you're thinking. I totally agree you shouldn't be on the meds if you don't want to be. I would also wish to choose no meds in the same situation. But if disability were the only way I could live then I would play by the rules and attempt treatment. Whether it worked or not because I would see the limits of the doctors and nurses and choose to respect them for doing what they have to do. I would understand that they hoped to help me but that it might not be possible. I guess I feel that you are fighting the wrong battle. The nurse is there to inject you---that is her only job---she's probably not even aware of the specifics of your treatment----she is not the one to argue with because the only thing that will come of that is anger---the situation is not in her control. The doctor has more freedom to alter your treatment but because of legal ramifications he is unlikely to do so until you are well. The only way to get a doctor to change your dose is to become well or feign wellness. If you become well (truly or through lies) you may no longer qualify for disability. Its a catch 22. Here's the thing, the system itself sucks...the only way to really change things is to change the system. You need to think about changing laws and policies not the nurse she is trapped in the system. The reason I'm promoting recovery is that it's an alternate much easier approach vs. changing laws---if you get better you won't need disability. I'm not saying that you don't want to---I know that you've tried before. Try again or if you prefer to fight then fight the system----fight the laws that make things impossible for the mentally ill. Fight where it will make a difference, arguing with either your doctor or nurse isn't going to get you anywhere---they are trapped because they must do the jobs they are paid to do---nurses inject--doctors prescribe. Decide what you want to do and then do it. Its a lot easier to be on the drugs for a couple of years and then taper off than to change 200 years of public policy. But if that doesn't suit you then fight, but fight smart. Fight people who can actually make changes not those forced to play their own role by society. Write letters, make calls start a lobbying group...whatever it takes. But really leave your treatment team out of it they may be a**holes but they are as stuck as you are regarding your care, when you come to them it is implicit that you are asking for help. Do you really expect them to risk their jobs for you because that is exactly what you are asking them to do...

Sometimes I hear what you are saying. I understand exactly what your point of view is and was. I totally get it. But how can you tell Newtus that she needs to fight the battle differently (write letters, lobby against the system, etc) if she can't even function enough to get out of bed? If they keep her over medicated by her injections how the heck is she suppose to change the "quality of her life"? She can't. She has explained in detail exactly what the injection does for her. So knowing this information why should she have to put up with it for "years" until they decide to listen to her and bring the medication down? I know docs and nurses have rules to follow. I fully understand that. I know they have a job to do. Granted. I promote recovery also. I believe a person has to do everything they can to work on their personal recovery. My point is this... from everything I have read from Newtus about this injection situation....I don't believe she is purposely trying to be non complaint. I think she is forced to become non complaint because they continue to force an over the top amount of an injectable medication into her body and it is ruining her "quality of life". I think if they had Newtus on a medication that was actually helping her, that she would take it willingly! Obviously she desires to be well and have a productive life. That doctor has rules to follow yes but he is the one that decides what medication to give. If a patient is saying this isn't working then just maybe they should listen. Don't you think?