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Certified Peer Specialist Programs


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Barbarannamated

I've seen the topic of Certified Peer Specialist programs touched on throughout the forums and hope to gather ideas on the programs. I first became aware of the Peer Program in Pennsylvania and have since talked with CPSs and Supervisors in a few states including Vermont, Tennessee and California.

 

If anyone is a CPS, please chime in and correct any info. I'm NOT a CPS, but have looked into the training.

 

Briefly, the Cerified Peer Specialist is someone who has been in the mental health system as a patient and works as a 'bridge' to help someone else (perhaps like a Sponsor in AA or NA?). The person I know in Pennsylvania was in outpatient couseling and became a CPS. Many have been hospitalized. The CPS in Pa goes into the hospital at least 1 day/week and has set up the program for the community hospital and GoodWill CPSs. Peer Support programs vary greatly by state. Pennsylvania has the highest number of CPSs according to the info I have. I will link to a Powerpoint Presentation that has info broken down by state, including advice on setting up programs. http://www.northcare-up.org/3%205%202%20C%20PillarsforCPSS11%2009.pdf

 

I am most familiar with Pennsylvania's GoodWill program (there are several providers) and have talked extensively to CPSs, a Masters Level supervior, and several peers (consumers). Most entered the peer program shortly after a hospitalization. Diagnoses include most Axis I disorders - Major Depressive Disorder, Schizophrenia, Bipolar - and several have Axis II diagnoses (Borderline Personality Disorder) which I adamantly disagree with but that is for another discussion.

SIDEBARB: Interesting - I just noticed Axis IV. Life events

 

A common thread among the CPSs I have spoken with is a dislike of the way they were treated by the system and a desire to change it from within. IMHO, they are making headway on several fronts. I was shocked by the Pennsylvania Community Mental Health system in this small city. There is no continuity of care aside from the CPS. It is not uncommon for the peers/consumers to see a different MD every other month for their 15 minute med check. It is a revolving door for physicians. The city is very depressed economically with a large percentage of people on SSDI or welfare. Philadelphia 'relocated' their criminals to this town for several years during political maneuvering. Most doctors have no idea what happened during hospitalization or diagnoses/treatments upon discharge. The docs keep adding new meds AND diagnoses. A 30-something year old woman lost her husband to a medication overdose - hospital error - a few years earlier and was clearly still grieving. She had diagnoses of Borderline, MDD and Schizoaffective when I met her although she left the hospital with only a MDD diagnosis. She is an intelligent, articulate, warm woman who devours any info she can about her diagnoses and meds. I believe she is now back in college. She was on 10-12 meds at one time. We backtracked to the time of her hospitalization and at 2-3 years out, she had 'earned' 2 additional diagnoses and laundry list of meds. EX: lithium to treat side effects of Lamictal (or vice versa) in addition to Zyprexa, Prozac, propanolol, trazodone, Ambien and meds for asthma and cholesterol. Her weight was approaching 500lbs.and she was trying desperately to lose weight thru diet. (yes, on Zyprexa)

This was my introduction to the Community Mental Health system (not rural). I realize this case is not unusual. The client, CPS and I analyzed her history and meds, determining when and why they were prescribed. Then, the CPS and client talked with her doctors over a few visits and gradually eliminated and/or reduced dosages. She was on a monster dose of lithium. Cutting that dose by 1/3 made a tremendous difference in her energy level. Propanolol seems to be the drug of choice for anxiety in that area. As I'm sure most of you know, it can cause the 'beta blocker blahs' because it lowers blood pressure by lowering heartrate (and energy).

I think you get the picture.

 

I've acted as a liaison between several people and their doctors, beginning with my elderly parents. They have white coat syndrome and are very intimidated by their doctors. Their generation still believes that doctors are Gods and they don't ask questions. Although my dad will DC my mother's meds if he reads something and becomes concerned. The first time I went to an appointment with my mother, the doc spent about 15 minutes with us. When we left, she was amazed that he spent so much time with us. :o I've had the exact same reaction when working with elderly people here in S.Ca.

 

I believe there is an opportunity to do polydrugging damage control thru the Peer Support System. The person I met in Tennesse, Lisa Ragan, MSSW, works for the state and coordinates all of the Peer Programs. I don't know her personal story, but she clearly communicated her disdain for the DSM. She is a strong advocate of peer support instead of partial hospitalization programs in bridging the gap between hospitalization and life in the community.

 

It is a way to work from within the system. The CPS is the only person to see the client in their own environment aside from psych nurses who occasionally go to patient homes. Not all states have Peer Programs and some have extensive networks with drop-in centers where classes are held, computers available, etc. Georgia has a peer run respite house with overnite accomodations for crisis situations. Arizona has 'Living Rooms'. Oregon has an extensive system w/great activists. Steven Morgan in Vermont has done phenomenal work. His story The Wind Never Lies is powerful. He has written several excellent pieces, including a challenging Letter to NAMI about changes he wants to see in the approach to Mental Health. I spoke with Steven in July when I was feeling a bit left of center but unaware that I was experiencing protracted withdrawal. If I'm not mistaken, Gianna Kali was a CPS at one point. She is AMAZING! If anyone has not checked out her blog, please do so now! Be sure to sign up for her daily blog posts - BeyondMeds - link on homepage here, right column.

 

Crocus, the attached piece shows no peer program in Colorado. Are you aware of any? Maybe that's your job - to head it up :) There are a few peers in Mark Foster's videos on his website (including Will).

There are several names in the attachment as well as guidelines for setting up programs. It isn't a high-paying career, but if you're like me - not working - it may be a bridge where we can use our experience to help others UNmedicate (appropriately, of course).

 

I haven't found a site that covers CPS activities and services throughout the US. I also don't know if this is something that is in other countries.

Alto, is it ok to collect info here?

 

Well, that certainly turned into a long message!

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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That's great that there are some peer specialists making inroads. I have a little, not a lot, of experience with these programs. I was 'nominated' by a well meaning person associated with NAMI but I declined the opportunity of an interview. I already knew from several peer specialists what the job entailed.

 

In my experience, I've talked about this before, most of the peer specialists do the work for the hourly (which came to about $875/mo here) which really helped with bills without threatening benefits.

 

The few I knew were on lots of medication. I may have even know more than just a few, I might know half a dozen who work in some peer support capacity in my city for a little money, can't remember exactly who worked where.

 

My friends who did the program were really out of it some days, talking of hallucinations (now and then) and having the 'look'. Ya know, the look of a person on shizo-dose of atypicals. They get swollen tissue around the eyes that makes them seem drowsy or on drugs, slumped posture, feet shuffling, staring off into space for long stretches.

 

None of the peer2peer folks were even moderately curious about down dosing. Complaints about medication were frequent but of the 'necessary evil' sort.

 

I used to attend meetings at the state hospital and it was really depressing. I also went to other meetings at the acute care hospital where suicide attempts are brought, and also severe drug/alcohol detox cases. I was a patient there after my own failed suicide attempt, so it was surreal to be back as a pretty well-functioning guy.

 

I get the sense that I am being a downer about the peer programs. That's not my intention. Obviously, there is a lot of potential for useful intervention. I just didn't observe it and, for $875 a month at the forfeit of any other M-F work, I didn't intend to try to get in there and fight the tide.

 

NAMI (and its satellites) in my town is irredeemable for the purpose of anything beyond vague support. Their primary objective seems to be the reinforcement of how necessary drugs are in my experience.

 

Also, Barb, I remember the paperwork that I was given when there was an opening. I don't recall anything about training so I suspect it is pretty light. The main requirements on the paperwork were that one was not in relapse and had been in inpatient psychiatric treatment in the past.

 

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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Lemme add:

 

I've been lucky to not have been at the mercy of the state.

 

Talking of 'consumers'. I have a buddy from this, he's 46 and trying to redefine himself. He lost a lot of life to overmedication.

 

Anyway, he had a doctor through what we used to call TDMHMR (texas dept mental health, mental retardation) but since renamed, who prescribed for him. He could see this doctor pro bono in exchange for making himself available for drug studies. So this 'doctor' regularly cold-turkey d/c'd him to allow his eligibility for whatever study. Doc always presented it as "opportunity" to get on the latest, greatest medication. He, my friend, ended up in lots of these studies and said the whiplash of coming off/going on was quite destructive. His doctor kept referring him to studies and he kept doing them since they paid well (for a person with nothing, in the XXX to X,XXX range.)

 

Disgusting.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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Barbarannamated

I can see how you'd have a different impression that I've gotten so far. Yikes!

 

I've definitely seen a different The person in PA managed to escape the system and was nominated by a counselor he knew who oversees the program. No meds. We debated that point a few times - is he really a 'peer' if he never experienced the guts of the system? He is an exceptional person - truly better than any therapist I've known. Extremely intuitive.

I was impressed by the Peers at the ISEPP meeting in October. Very intelligent, well spoken and obviously functional since they were presenting at the conference. I believe several of them have gone on to get Masters in Psych or Social Work.

 

It sounds like the program differs quite a bit by state, but the paperwork remains the same! Ridiculous. But it's Medicaid funded, so, to be expected, I suppose.

 

That is horrible about your friend being a subject in the studies. Wrong on so many levels, the least of which...is he really a good test subject after being exposed to so many meds? I guess that's a moot point considering how the studies are conducted anyway.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barbarannamated

I just took a better look at info in the link above. Pennsylvania appears to have had the biggest program in 2009 w ~500 CPSs. Texas had less than 100, so maybe just getting established. PA CPSs are trained by MDs at U of Penn for part, at least. The head of geriatrics at Med School taught the GeriPeer section. I recall that b/c he was very anti-med. The PA training is 2 weeks/ 80 hours. Texas and a few other states have a complete-the-modules on your own plan and no certification.

I can certainly see why you have a different impression, Alex. I'm glad I came across that info. I wouldn't want to bother w a poor program. I would do it on a volunteer basis, but want to get the most I could out of it. The people I know do it full time and the healthcare benefits are excellent! Full medical, dental, vision, paid vacation, disability (it is Goodwill in PA).

B

I'm typing away trying to distract myself from present situation. Sorry if rambling.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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No Barb, you're not rambling. It's just typing :-)

 

I am at a wonderful endoftheworldcoffeeshop here by the campus. They have a dj and I it is a beautiful night. The dj just sits at this big wide table and plays songs, seems like a pretty easy gig.

 

I don't get out much but am trying to work on a few websites and check in here, so Im glad you keep posting.

 

I agree in that my sense is that peer2peer programs could be really great tools and I don't doubt there is a ton of diversity state to state.

 

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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Barbarannamated

I wish I was sitting there listening to music with ya, Alex. Good tunes, I hope? I liked Austin. Stayed for awhile in Bastrop w car trouble. It was before the big fire. Felt like I was on the Friday Night Lights set. ;)

Thanks, Alex.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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I wish I was sitting there listening to music with ya, Alex. Good tunes, I hope? I liked Austin. Stayed for awhile in Bastrop w car trouble. It was before the big fire. Felt like I was on the Friday Night Lights set. ;)

 

That would be lovely Barb. I think the tunes are okay, sometimes they are good, and sometimes I dunno whatit's supposed to be! I don't follow pop culture much at this point in life.

 

Austin is nice. People seem to think so and keep moving here. But it's also changed a lot in ways that a lot of people don't want to accept. The old timers, I'm an oldtimer after 20odd years, are pretty unanimous that things were better before it became what it now is -- essentially Little Dallas. It used to be old counter culture folks, musicians/artists, politics, the university. The artists and counterculture folks are dispersed bc all the corporate jobs have made the central part of town super expensive.

 

If you appreciate the silicon valley type of corporatism, maybe you wouldn't mind it. It's Whole Foods, Facebook, HomeAway, Dell... It's not GE. But still, it's changed. We all think (but the local pols) that 'the old days' are gone.

 

Maybe if I had one of those Facebook jobs and was about to get some of that stock then I would have a different point of view!

 

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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Barbarannamated

Give me Mayberry. No, maybe not Mayberry. A decent size city in the olden days, skip the Depression and major wars and slavery and....

This conversation is going to confuse some people, eh?!

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Who knows!

 

It's part of our recovery to veer off course now and again, I think!

 

I am curious about heading a bit north. I imagine that the mountain west and pacific northwest would be swell. I couldn't imagine living in a small town that was far from a decent sized city. There are some places in Texas that are just nowhereville. The same is true of New Mexico which I drove through last June, total desolation for hours at times.

 

Back to the topic of peer specialists, what are the possibilities for you? It sounds like you are interested in possibly pursuing it to a greater degree than your current involvement with the elderly, if I'm reading you right.

 

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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Barbarannamated

I don't have a plan just yet. Thought about grad school, but not sure I want to do the time at this point. Whatever route I choose right now will be a way to get somewhere else. That almost sounded existential.

BTW, are you familiar w Austin therapist John Breeding? Sounds interesting. Wildest Colts Make the Best Horses or something like that.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Yes, but I don't know him.

 

Someone referred me to him or I found his website or whatever. I remember calling him and either he wasn't seeing new clients or he just never called me back. I do remember he had a pretty unique website, which I looked over. I maybe know of him through other professionals as well if he does group therapy. I know a lot of the group therapy people here bc it's a very tight circle, sort of inbred actually. Maybe that's where I first came across the name.

 

I think about grad school sometimes as well. But, I just don't know. I need to just be able to work for a bit. I do know what you mean about getting someplace else. Because of my ordeal, you can probably relate, I really need to build certain things that I just have never constructed for myself. And it'll probably be done in steps so the next step is just the next step. Also I've been feeling better lately and that lends me to planmaking. Unfortunately, it's hasn't been a permanent better any of the other times so it sucks to think there are probably more setbacks still. A challenge.

 

I'm pretty optimistic though. Things will work out in the end for people like us. Because we are okay to look at reality. I can't be hurt by getting the rug pulled out anymore. If there's been a positive, I appreciate time and realize how little I have. This is only possible because I have lost so much. Time is the prime asset in life and nobody seems to realize it. Actually health, I think, is #1. But it's sick people who understand time's value. Healthy people are too caughht up in the BS. I'm in running against time and I'm certain to lose this race. Now that I've accepted this, I can live my life, finally. It took this to get me to see the possibilities and what I have to do to achieve things, working against a clock. If that makes sense. BTW, the dj is playing some lousylousy rap song that is offthecharts with offensive lyrics and Ive got a thick skin...

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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Barbarannamated

Yes, but I don't know him.

 

Someone referred me to him or I found his website or whatever. I remember calling him and either he wasn't seeing new clients or he just never called me back. I do remember he had a pretty unique website, which I looked over. I maybe know of him through other professionals as well if he does group therapy. I know a lot of the group therapy people here bc it's a very tight circle, sort of inbred actually. Maybe that's where I first came across the name.

 

I think about grad school sometimes as well. But, I just don't know. I need to just be able to work for a bit. I do know what you mean about getting someplace else. Because of my ordeal, you can probably relate, I really need to build certain things that I just have never constructed for myself. And it'll probably be done in steps so the next step is just the next step. Also I've been feeling better lately and that lends me to planmaking. Unfortunately, it's hasn't been a permanent better any of the other times so it sucks to think there are probably more setbacks still. A challenge.

 

I'm pretty optimistic though. Things will work out in the end for people like us. Because we are okay to look at reality. I can't be hurt by getting the rug pulled out anymore. If there's been a positive, I appreciate time and realize how little I have. This is only possible because I have lost so much. Time is the prime asset in life and nobody seems to realize it. Actually health, I think, is #1. But it's sick people who understand time's value. Healthy people are too caughht up in the BS. I'm in running against time and I'm certain to lose this race. Now that I've accepted this, I can live my life, finally. It took this to get me to see the possibilities and what I have to do to achieve things, working against a clock. If that makes sense. BTW, the dj is playing some lousylousy rap song that is offthecharts with offensive lyrics and Ive got a thick skin...

 

Yes, I understand and I believe you will understand how fortunate it is to understand at a still young age. Understand?

Rap is ... unbearable.

Have a good nite, Alex. Enjoy!

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barbarannamated

Link to National Empowerment Center/Creating Connections. Video of Mark Foster, DO, Will Hall, Bruce Levine, PhD, and many other great speakers.

 

http://www.power2u.org/creating-connections-through-dialogue.html

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Very interesting topic. Thanks, Barb, for posting this.

 

I wonder if the CPS has any input into situations of over-drugging. Such as, if you met an elderly person taking 5 psychiatric drugs. Suspect this might get you thrown out of the hospital PDQ.

 

I wanted to find out if there are any CPS programs in California, since one isn't listed in the pdf you posted. This is something I might do myself.

 

I found this site http://www.peer.ca/peerassociations.html , which lists all kinds of peer support organizations.

 

The mental health groups it lists are:

  • The Peer Specialist Alliance of America has been created for people in recovery from psychiatric disabilities, researchers and others from around the USA. The participants in the founding meeting in July, 2006 in Philadelphia represented a "who's who" of national and regional mental health advocacy, service and research organizations. Their common goal was to promote the emerging profession of certified peer specialist, that is, people in recovery from psychiatric disabilities who are employed to help their peers work toward their own recovery, often in places where credentialing requirements have traditionally excluded consumers from staff positions. The PSAA can be reached by phone (800) 553-4539 ext. 288, or write to: PSAA c/o the Clearinghouse, 1211 Chestnut St. Suite 1100, Philadelphia, Pennsylvania 19107; or email: srogers@mhasp.org
  • Depression and Bipolar Support Association is a leading provider of peer specialist training and certification. The training is based on a recovery philosophy. For additional information contact Lisa Goodale, DBSA, 730 N. Franklin St. Suite 501, Chicago, Illinois 60654; Tel: (800) 826-3632.
  • Florida Peer Network, Inc. is an independent organization of and for people who are recovering from psychiatric disabilities and co-occurring disorders. Their mission is to promote recovery, quality of life, advocacy, education, mutual support, peer-directed services, and participation in mental health policy design for consumers in the state of Florida. Contact: Florida Peer Network, Inc., 13301 Bruce B. Downs Blvd., MHC 2505, Tampa, Florida 33512; Tel: (877) 352-7337.
  • National Coalition of Mental Health Consumer/Survivor Organizations is dedicated to providing a voice for consumer/survivors in the development and implementation of health care, mental health, and social policies at the state and national levels, and empowering people to recover and lead a full life in the community. Contact: 1300 L Street, Suite 1000, Washington, D.C. 20005; Tel: (978) 590-2014; email: info@ncmhcso.org

I know some of these get pharma money, pharma wanting to look good. What the heck, take the training and do it your own way.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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Barbarannamated

Alto,

A resounding YES! to your last statement!! I believe that is what's happening already, but I see a huge opportunity for people who can discuss pharmacology with docs. I don't believe they intentionally overmedicate, but don't have the time to unravel years of polydrugging by numerous docs. I found this w geriatric medicine, unrelated to psych. My parents were on so many cardiac meds because docs are afraid to DC a med initiated by another doc, even if patient no longer goes to other doc. Nobody is taking control and doing med management. The ONLY place i saw decent med management was by Consultant Pharmacists in nursing homes. It is their legal responsibility to oversee all meds, reduce 'chemical constraints' used to control behavior thru interdisciplinary team meetings on a regular basis (monthly, I think) for every resident. OBRA Guidelines. There may be similar guidelines in foster care as it is also Medicaid funded. I think recent news is government finally enforcing fraud laws.

Despite all of the hype w electronic med records, there is no oversight of outpatient prescribing. Docs are free to prescribe as they want --off label, no age restrictions, etc. Most psych patients and geriatrics feel powerless and don't /can't challenge doc.

Sometimes you have to first play by the rules in order to change them. Working from extremes doesn't work.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barbarannamated

The info is very scattered. No one governing body or website that I know of. Robert Whitaker may know. Also, Steven Morgan has done amazing work.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Robert Whitaker has enough to do, Barb. He's constantly speaking, all over the world. If you want to unify this information, you have to do it yourself -- which is true of all good ideas in this area. Plenty of room for an energetic person to contribute.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Barbarannamated

Vermont Recovery-Steven Morgan

Boston University

U of Penn

Sherry Mead

GiannaKali/BeyondMeds has had alot from CPSs

 

There are many providers of Peer Services. I'm most familiar with Goodwill.

 

I will continue to search for a concise directory. It is frequently referred to as 'Consumer Movement /Services'.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barbarannamated

Robert Whitaker has enough to do, Barb. He's constantly speaking, all over the world. If you want to unify this information, you have to do it yourself -- which is true of all good ideas in this area. Plenty of room for an energetic person to contribute.

 

Many of the people Robert references in Anatomy have begun Peer Programs or are Certified Peer Specialists throughout the world so I'm thinking he could suggest a point person in the fragmented system•

He appears to work closely with the Consumer/Peer Movement ~ special acknowledgment at the end of Anatomy of an Epidemic • he seems like one who wants to unite the forces~share info and avoid reinventing the wheel • David Oaks is another

I've been trying to track down this info for over a year but it differs by state and also by current reimbursements within each state •

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barbarannamated

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barbarannamated

Confusion abounds!!

 

NAMI is one of the main providers of Certified Peer Support. This is a Letter to NAMI written by Steven Morgan who started Vermont Recovery as a CPS. I've spoken with him once in the past. Very involved with Recovery/Survivors.

Gia! Maybe you can shed some light on this!!

 

http://www.furiousseasons.com/archives/2008/01/a_challenge_for_nami_national.html

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Altostrata

Did Steven Morgan get any response to his excellent letter from NAMI?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Barbarannamated

I believe he did. In that post, I think Philip mentions that Steven did get responses but wasnt publishing them at that point.

I will try to find out. Havent talked to him in about a year.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barbarannamated

Vermont Recovery is Steven Morgan's Peer Organization. I'm not sure how he is involved at this point. Just send a message to him. Let him know of this group and will let you know what i hear back.

 

Here is link to his page on Coming Off Medications:

 

http://www.vermontrecovery.com/comingoffmeds.html

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Vermont Recovery is Steven Morgan's Peer Organization. I'm not sure how he is involved at this point. Just send a message to him. Let him know of this group and will let you know what i hear back.

 

Here is link to his page on Coming Off Medications:

 

http://www.vermontrecovery.com/comingoffmeds.html

 

Wow, looks like you are on a tear. I'm reading the site, looks good. I wanna move to Vermont, wonderful state, great site. We need sites that deal with ADs and Benzos. There is a schism between benzos and ADs.. think? (this site is the most moderate I've come across, Kudos)

 

But I digress...

 

You Go Girl!

As always, LISTEN TO YOUR BODY! A proud supporter of the 10% (or slower) rule.

 

Requip - 3/16 ZERO  Total time on 25 years.

 

Lyrica: 8/15 ZERO Total time on 7 or 8 yrs.

BENZO FREE 10/13 (started tapering 7/10)  Total time on 25 years.

 

Read my intro thread here, and check the about me section.  "No matter how cynical you get, it's almost impossible to keep up." Lily Tomlin

 

 

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That's a terrific letter. I am quite familiar with NAMI in my town. I volunteered/belonged to a satellite organization based on the ICCD clubhouse model. Our Ex Director's previous job was as the president of my city's NAMI chapter.

 

First from my experience, there were two groups of people involved in our organization (these same people were also active at NAMI itself, and were the usual suspects at other organizations for consumers or their advocacy.

 

Okay, so group one were people technically diagnosed with a psychiatric condition but had larger predominant issues, issues that would not have fallen under psychiatry's umbrella decades ago. One guy was blind, one fella mildly retarded, a guy who'd suffered some head injuries and so on. This group was well served, relatively, by our organization because,as a group, they were impaired independent of their psych meds.

 

Group two consisted of the overdiagnosed and overmedicated; subsequently "mentally ill" but moreorless average folks whose lives run offtrack. Many were probably trauma victims caught up and chewed up by likes of zyprexa, benzos, opiates, etc. This group tended to be more adamant about their need for meds, angry about society's misunderstanding about their illnesses, frequently in poor health, frequently dependent on family or social services. But by and large they were unknowingly unfortunate. The organization probably didn't help group two's members in the aggregate for reasons easily imagined and written of in that letter.

 

Our organization was hopelessly pro-pharma. I pulled the national annual report once just to confirm what I'd read in Whittaker. Yep, that year probably 80% of the money came from five or six corporations, as I recall. (The usual suspects.) The people in charge did not have a sophisticated understanding of the science or even the debate. Mindfreedom type organizations were viewed as cultlike or worse since they advocated "keeping people sick". Several individuals were fixtures at the organization and no longer attend. Of these only one left because he stumbled across the possibility that the drugs weren't helping. A few people I know have disappeared and several have died including a pair of recent suicides.

 

I still get emails from the staff and frequently see one regular attendee. The place is now run by a former special ed teacher and two recent college grads biding time before law/med/PhD school. The kids are achievers (likable both) and actually run the operation. However, they come from honors programs, Yale undergrad in one case, and don't have a lot of interest in disturbing the status quo which will one day benefit them...

 

They mean well. Misguided but not malacious. Group one doesn't realize how they are looked down upon. Group two is just used to it.

 

I sometimes think of stopping by the old clubhouse. But this thought is fleeting.

 

EDIT: Of curiosity I went looking for NAMI's paperwork. I remember this being easy to find 18 months ago. It wasn't so easy to find. I looked at the recent reports which de-emphasize the role of corporate partners. But the 2006 report (FY 2005) listed 18 corporate donors from Abbott to Wyeth. Tax documents showed 11 donors (no names) contributing between $xxx,xxx and $x,xxx,xxx and the org's total operating revenues totaled $9.5Mn with $350,000 coming from govt grants. The top 11 contributors gave a total of $4.9Mn. So my recollection seems overstated. In any event, that's still more than 50% of total revenue. I think then NAMI will most readily find willingness to reconsider their position at the soonest appearance of a partisan donor carrying a $5,000,000 check.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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Barbarannamated

I mentioned NAMI because I received a PM suggesting it as an alternate to the CPS position and a way to stay away from pharma influence, thinking that the CPS position would involve playing into the pharmapsychiatry system. I was aware that that NAMI is a major employer/provider of Certified Peer Specialists and also that they (NAMI) are backed largely by pharma. The irony of the opposite assumptions about NAMI and the role of the CPS struck me. I think it's detrimental to assume that any one organization/doctor/person is either ALL BAD or ALL GOOD. I, personally, have not met/talked to any Certified Peer Specialists who are NOT anti-drug/psychiatry/labeling. At the International Society for Ethical Psychiatry and Psychology (ISEPP) Conference in Los Angeles last fall, there were dozens, possibly over 100, CPSs who work from within the system to effect change. Several of the people Whitaker mentions in Anatomy of an Epidemic are CPSs (he says that in the book).

 

Robert Whitaker was recently the Keynote Speaker at the NAMI Conference in Los Angeles. I didn't attend and have not heard/read the contents of his presentation, but my guess is that he spoke of ways to work together toward a sane approach to mental health. I just found a blog post by Corinna West addressing this very topic, with excellent comment by Alto (you are EVERYWHERE!).

 

http://wellnesswordworks.com/nami-mental-health-advocacy/

 

I believe that all sides have to keep talking. There are so many factions to the 'antipsychiatry/antidrug/antilabeling' movement (EX: Breggin v. Healy v. Whitaker) that makes it easier for the opposition (pharma) to proceed with their agenda. They don't have to divide and conquer when we are doing it for them. I believe the CPS position is just one way to keep the sides talking, especially if someone with knowledge of pharmacology engages the physician in dialogue to rationally minimize drugs. MANY of these patients, especially those having been hospitalized multiple times and on 5++ psych drugs AT ONE TIME, have never considered that the drugs are the problem. A Patient Advocate, be it a CPS or independent, is in a position to plant a seed at the very least. Most of these patients will NEVER question the doctors or drugs when under the influence. Then they are said to die 'of natural causes' at age 45-50 as Gia spoke of earlier this week. VERY SAD, especially for those of us who HAVE been exposed to not only SS/NRIs, but also several neuroleptics for 'treatment-resistant/refractory depression'.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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meistersinger

I am learning very fast that The enemy of my enemy is my friend. I may have to turn to NAMI for case management, as my brother is making noise I am no longer welcome here. He believes mental illness is a cop out, and all such people that are suffering depression are lazy bums and deserve to be thrown out on the street and villified.

History:

1995--Prozac--Quit CT by GP

1995--Effexor--Quit per my GP

1996--Amitriphene--Quit CT when changed GP

2005--Citalopram and BusPar. Prescribed when I decompensated in my GP's office. GP referred me to behavior health. Psychiatrist prescibed these drugs. Taken off citalopram in 2011 due to FDA warning. Quit Buspar during transition to viibryd.

Viibryd--2011 to present. Had a severe reaction in March 2012. Advised both GP and Psychiatrist I was trying to get off these drugs.

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Barbarannamated

I am learning very fast that The enemy of my enemy is my friend.

 

Great statement. Meistersinger!

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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meistersinger

 

I am learning very fast that The enemy of my enemy is my friend.

 

Great statement. Meistersinger!

 

I have been talking to people that run the local Warm line, which is run by The Local Mental Health America chapter. Yes, big Pharma has their hands in their pants, as well as NAMI, but to be quite honest , if that's the only way to get case management, so be it. These days altruism doesn't pay. I was told by the volunteers on the warm line that of the medications are not working and you want off, they

would be there to assist. I have very little problem with Big Pharma footing the finances, even if I don't agree with their agenda.

History:

1995--Prozac--Quit CT by GP

1995--Effexor--Quit per my GP

1996--Amitriphene--Quit CT when changed GP

2005--Citalopram and BusPar. Prescribed when I decompensated in my GP's office. GP referred me to behavior health. Psychiatrist prescibed these drugs. Taken off citalopram in 2011 due to FDA warning. Quit Buspar during transition to viibryd.

Viibryd--2011 to present. Had a severe reaction in March 2012. Advised both GP and Psychiatrist I was trying to get off these drugs.

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Barbarannamated

I agree, MS. Choosing ones' battles is difficult, especially after being hurt by a product or industry that continues to inflict damage. My position vacillates daily.

I'm glad you've found an agency to assist you.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Altostrata

I have Google alerts set up to keep an eye on things.

 

Barb, local NAMI chapters vary in quality and philosophy. Why don't you start with one that's nearby and poke around?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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meistersinger

I agree, MS. Choosing ones' battles is difficult, especially after being hurt by a product or industry that continues to inflict damage. My position vacillates daily.

I'm glad you've found an agency to assist you.

 

My immediate problem is going to be housing, as there is currently no funding for such.

History:

1995--Prozac--Quit CT by GP

1995--Effexor--Quit per my GP

1996--Amitriphene--Quit CT when changed GP

2005--Citalopram and BusPar. Prescribed when I decompensated in my GP's office. GP referred me to behavior health. Psychiatrist prescibed these drugs. Taken off citalopram in 2011 due to FDA warning. Quit Buspar during transition to viibryd.

Viibryd--2011 to present. Had a severe reaction in March 2012. Advised both GP and Psychiatrist I was trying to get off these drugs.

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Barbarannamated

This position is too interesting to NOT share!!

 

"Actively participate in education and training of psychology residents, post-doctoral psychology fellows, psychiatry residents, and child and adolescent psychiatry fellows."

 

http://www.indeed.com/m/viewjob?jk=119c11b7b3bed764

 

In case link doesn't work, it was for Scott & White Healthcare in Texas. Related to Texas A&M per website.

 

https://swtep.mycmsc.com/psp/swtepprdext/EMPLOYEE/HRMS/c/HRS_HRAM.HRS_CE.GBL?FolderPath=PORTAL_ROOT_OBJECT.HC_HRS_CE_GBL2&IsFolder=false&IgnoreParamTempl=FolderPath%2cIsFolder

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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I agree, MS. Choosing ones' battles is difficult, especially after being hurt by a product or industry that continues to inflict damage. My position vacillates daily.

I'm glad you've found an agency to assist you.

 

My immediate problem is going to be housing, as there is currently no funding for such.

 

The organization I spoke of is fairly effective at helping locate housing. You may want to check http://iccd.org and see if there is a clubhouse in your area. Clubhouses are distinct from NAMI. Only in my city are the two highly intertwined, so far as I know.

 

You can call the ICCD at the number on the website and talk to a live person who will, possibly, be able to make some recommendations. The head office is in NYC and I don't know how close you are to them.

 

Best,

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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