my awesome caseworker!

So Edith is an awesome caseworker. I’ve been looking for therapy/ groups lately. Other day programs haven’t worked out but I do want to find some therapy for myself as well as groups. Especially as I don’t see Jonathan anymore and getting out for groups would be good.

Advocate IL Masonic hospital has a good outpatient psychological program. They have individual therapy as well as groups. Edith called and I have an appointment for September 21. The therapist I’m meeting with is Narata Czah. She’s not on the website’s listing for anything but neither is Dr. Fyazz and she sur works there.

It’s not good to assume but I worry that she won’t have English as her first language with that name. I know it’s so judgmental but it’s true. Plus looking over the therapist listings that are on the website so many of them do CBT therapy which I will not do! Absolutely won’t in group either. The groups that I saw listed there were two on depression and they were called Learning to smile and Keep smiling. OMG what names. Really these therapists actually believe that you can think your way out of depression and just smile? Just the name sets my nerves on edge. There were a few therapists listed who didn’t do CBT but none of them were named Narata like I said she wasn’t listed anywhere.

Additionally, Edith called Thresholds a well known mental health center in Chicago. A social worker Ashley is coming in to do an intake. I’m not sure what they offer in terms of groups or individual therapy. They will be coming October 21 so a month after this other appointment. So if one doesn’t work out I’ll have the other one and there are some other places she can call. I’m just anxious about this Narata and whether she does CBT/ similar therapy and if I’ll even like any of the groups considering that Keep smiling thing. But we’ll see.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

Book review: Possessing Me: a Memoir of Healing by Jane Alexander

Hi everyone,

So I’m happy to say I’ve just finished Possessing me: A Memoir of Healing by Jane Alexander. Thank you to bookshare for adding it to your collection! (especially as I requested it) LOL!

Anyway I’ve had an interest in Jane Alexander since 2008 when I stumbled upon her youtube videos. I did so by typing in “life in a group home.” As I’d always wanted to know about that for some reason and had yet to find an books on the subject. One of her videos came up detailing her experiences in a couple of residential schools she was made to attend in her teenage years. I was emediately struck by this intense, very intelligent, passionate and articulate woman with a lot to share about her personal experiences.

At the time I was attending community college and not fully learning enough about psychology to fully appreciate everything she was talking about. I also didn’t know I myself had clinical depression or PTSD.

However I liked all her videos and her captivating voice. Then in 2010 all her videos were taken down. She said she’d put everything together in a book called Possessing Me: a Memoir of healing. This detailed everything from the child abuse she and her siblings suffered, to her experience with the state foster care system, to psychiatric hospitalizations, forced medicating, her downward spiral, final suicide attempt and path to true healing. I was really sad to see all her videos go. And that the book wasn’t in any kind of accessible format.

I kept an eye out for a kindle or audio version but none has come out. I think it would be amazing if she did an audio version with her reading it as I said she is an extremely articulate and engaging speaker. You can deeply sense many facits of her personality just through hearing her speak. A big one is her passion for wanting people to receive quality healing and not have to battle with the institutions and drugs that she did. To find the inner peace she has found.

The book is very complex at least I feel it is. The first two parts are the straightforward mental health memoir. They talk about her childhood growing up and how she sees her mental illness developed. And the downward spiral and chaos that often happens before a person finds solid healing/ support. The third part, rather than going into how she connected with a therapist/ support group, found meds that worked for her ETC, travels down a totally different road. It goes deeply into the principles/ practice of Tai Che and Chi Gung. Incredibly things happened within Jane that she self directed that fundamentally change her mind body and spirit. Through deep meditation, that I personally can’t even grasp the nature of, and through a process called “dissolving” she was able to systematically and precisely erase all emotional/ physical/ mental aspects of what were termed her symptoms of bipolar disorder, psychosis and PTSD. Not only did she release all these symptoms, she went deeper and combed her whole being for anything that was not purely Jane. This was at the end of the book where her last hurdle in the process was the fear she was “possessed” by a demon or other force. This process of internal spiritual and energetic work ended in her deep self-intigration, a realization that everything within her was hers. Rather than something possessing her, she was truly self possessed.

The last part of the book describes her thoughts on mental illness being professed as a genetic biological disorder, when she can see no evidence to actually support that. She as I said is extremely intelligent , intelligent enough and well versed enough I feel to battle with the top scientists out there. She discussed how many drug companies are out there to make a profit particularly what a crime it is to subject children and teens to heavy brain chemical alterin drugs. And how she feels true inner peace/ healing can not happen when on any kind of drugs street or otherwise.

She fully admits these are only her opinions and represent what has worked for her. She also says that she spent so much time in the isolation required for self-healing that from the early 90s when she attempted suicide til late 200s when she one day went on the computer and looked up bipolar disorder, she was totally out of touch with the mental health recovery community. She didn’t know about consumer organizations like NAMI or DBSA. Or long term psychotherapy, EMDR, DBT ETC. Or a new trend in the field which is something she discovered deeply within herself, the practice of mindfulness and meditation as a part of therapy. However I feel that any clinician couldn’t have given her what she gained through the intense five year in depth process of totally self directed healing. Yes she did attend retreats to do with Chi Gung lead by Bruce Frantyis who was a leader in the type of che gung meditation that worked for her. But ninety percent of the work was totally inner directed, constant deep self-awareness and spiritual healing. It wasn’t simply like she waved an internal wand and all emotional, physical and mental pain went away. For each thing to be dissolved it had to be consciously brought to the surface and intensely focused on in order to disappear. This would mean feeling the pain that had been inside all this time much of which she was unaware of. She had to bring the energetic healing to each experience and this often took a lot of work and concentration to dissolve. She became better and better at knowing her limets in the work and when to take a break. Still as she describes the process it’s clear that its grueling work to stick with. It was her convincition intuitively that this would work and was the way to healing for her that kept her going even through moves, homelessness physical injury joblessness ETC.

I would wholeheartedly recommend Jane’s story to absolutely anyone interested in psychology, holistic studies, meditation, martial arts, psychiatry ETC. It puts a new spin on mental health recovery. Not just maintaining triggers, symptoms and trying to stay one step ahead of an illness you have for life, but totally erasing all traces of distress physically mentally emotionally and spiritually. And to have no depression even mild. Sure she had emotional ups and downs but she was totally in charge of her inner state. And there were no traces at all left of the history she had and the diagnosis that was a life sentence for her at 15.

I think like anything else it should be taken with a grain of salt. There are overgeneralizations and skewed assumptions in pros and cons of everything. I think people need to follow their intuition and what works for them. Just like she doesn’t want people to go on meds because she feels that it would be mind numbing and not fix the problem, I don’t think she’d want people to not take meds if that’s what they think they need. I think whatever works works.

And I will say that she’s not the only person who uses/ believes in healing through completely natural avenues, namely energetic/ spiritual supplements ETC, rather than standard psychiatry, psychotherapy or support groups. There’s an organization called Windhorse integrative, in Western MA. They prac tice holistically. They’re not against meds, but do have very different ideas about how to respond to people in crisis than other organizations. Their all about companionship and complete respect for a person no matter what state of mind they’re in. Something that I still remember from the founder of this o organization speaking at my holistic psychology class, was the theory of energy exchange. Kind of like when you’re around people that are in a bad mood everyone kind of somehow gets in a bad mood and things get worse rather than better. The theory is that people with mental illness, being around other people with mental illness is not recommended or something they personally do because people pick up on each others energy/ issues and things get worse rather than better. Jane too states this saying that she doesn’t believe in support groups as it reminds someone constantly that they have a life long illness rather than something they personally can get through and fully leave behind.

I totally disagree. The best experiences for me have been connecting with others with mental illness even if their issues are extremely different from mine worse better ETC. Living at Albany with its ups and downs I don’t believe has adversely affected my mental health. Even in this environment I’ve been able to concentrate on myself and my own healing and have found stability here. I do believe in support groups and I believe not everyone could or should undertake the very isolated existence Jane did in order to heal. For her that was exactly what was needed it’s not a prescription for others.

Anyway back to what I was saying. I know many others who feel as she does that mental illness or emotional pain is something that can be completely cleared/ released/ gotten away from. Not repressed or managed but completely gone. A friend of mine, ironically a social worker, believes this strongly. That traditional psychiatry has absaolutely no solid scientific evidence about what causes mental illness and how the drugs work. She believe that psychiatric drugs do a lot of harm to the mind and body. Even when I was on a small dose of Zoloft and tenex and visiting her house she kept saying “I wish you would get off that stuff!” like I was a heavy drug user. I wouldn’t want to see her reaction now that I take three meds a day that are at much higher doses. She believes in supplements, dietary changes, and energy healing. Methods like Healing from the Bodyu level up HBLU, reconnective healing, and meditation she feels work much more deeply and with permanent results than traditional psychotherapy.

I don’t know how I feel. I’ve gotten through a lot using regular psychotherapy. While the issues aren’t totally gone I’ve gained a lot of perspective and been able to share and get through a lot of painful emotions, and learned ways of managing my feelings without self injuring. I don’t know where I’d be without meds and I certainly don’t want to risk my whole stability to try vitamins, meditation herbs ETC.

But I’d love to hear others experiences. I think more than anything else Possessing Me, and Jane’s experiences as those of others, are here to bring about an important dialogue and awareness that there is more than one way of looking at a huge issue in today’s society which is how people cope with emotional suffering. So I’d love to hear your comments. And especially from Jane. And I would like to genuinely ask Jane, why the comments are turned off on your blog. Out of complete nonjudgmental curiosity. I feel like your posts, and you keep the blog pretty up to date could spark a good discussion and I know you’ve talked with many people before on youtube so am wondering why you choose to have the comments feature turned off?

Below are resources related to Jane and her book.

Blog one, the up to date one.

https://intentions.wordpress.com/

Book site

http://possessingme.com/

Book is on amazon not on kindle or audio sadly. It is on bookshare.org

Adventures of a rebil taoest

https://roguetaoist.wordpress.com/about/

would love to hear experiences of others living in group homes, IFCS, or other residential settings

Hey everyone,

So I’ve written quite a bit about my experiences in Albany care. It would be so interesting if the others here who do blog, don’t know who they are, but assuming there are any, would write a post on their experiences living here as each person has an extremely different perspective. The perspective is based on their reasons for coming, whether mandated, voluntary ETC, their goals, rather knowing they need this environment to be stable, only here for short term; insight into their mental illness, personality and the list goes on.

That said I’d love to hear from a variety of people, should anyone else feel willing and brave enough to come out and discuss it, and how they feel about residential care in the adult mental health system. Usually you think of residential care in terms of for teens, foster care, or teen group homes. In those situations the person sadly doesn’t have a choice about where they end up and why. It takes an insightful and articulate teenager I feel to take whatever theraputic value they can find from these experiences, or on the other hand, to know that the place isn’t for them but to grow in spite of it.

But for the over 18 population, I assume, in fact I know at least with intermediate care facilities here in IL, residing is by choice. No one is forced to live here. The staff try their best to provide an environment that’s physically and emotionally as stable and healing as possible within the resources/ financial, professional ETC that are available. In spite of some opinions firmly in the direction that these places are only institutions out there to make a dollar (in spite of the very low pay leading to staff turn over) I do believe people here are trying their best. If someone leaves AMA ( against medical advice) the staff that I know and connect with truly feel for them. Even the most ill mannered out of touch person is not shuned by staff here. In their own way staff do whatever they can to try and help. That doesn’t mean it always works or is what that particular individual needs.

Anyway so going off the principle that living in such places is by choice, I’m wondering about various experiences people have with long term residential care. In this case I’m speaking of the residential care system of intermediate care facilities, IFCS, group homes, shared living, adult foster care ETC that are part of most states adult mental health system, along with supported housing with an apartment style living a arrangement. I’m also curious about this set up, as service websites/ providers claim the residents of this apartment settings while not getting 24 seven staffing get a good amount of support case management, med management help ETC. Would love to hear whether this is truly the case or not.

I’m helping out a friend who is having a really tough time in the residential mental health system at the moment. She’s recently left the foster care system and is working hard to find a stable living environment to help her cope with her mental illness. All the group homes and housing services have huge waiting lists. Which is why I’m curious for all that waiting what the quality of care is like. She’s currently in a group home where she feels she is being treated very poorly by staff who are quite unprofessional when it comes to helping her with her symptoms. They promised services three months ago that have not been delivered. Hearing about and exsperienceing that kind of rip off from the human service system is so upsetting to me. If you can’t provide something at least be honest. Then again if every single place where super honest about what they couldn’t provide I suppose many people wouldn’t bother getting services at all.

So wanted to open up a dialogue about the good the bad the ugly and the life enhanceing aspects of residential care. As I’ve written here I’ve experienced all manner of aspects of the service and am now curious to hear others thoughts.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

update on the progesterone pill

Hey everyone,

Sorry I haven’t written since Thursday. Have been busy the last few days but thinking of everyone and wanted to keep you all updated on the little goings on of my life.

It was a relief to know that Edith rather than being totally upset I refused the progesterone on the grounds that I thought adding unnatural hormones to the mix of hormones, sensitive emotions, and psychiatric meds would destabilize me, she respected me genuine research. I did not send her one forum post in spite of actually more often than not trusting the views of those who post on forums as they’re the people that truly experience whatever issue not the doctors or outsiders telling you about it. Anyway she took it seriously and went to the director of nursing with it.

Karen the director of nursing has been here awhile. Jonathan the current clinical director has been here at least ten years. Apparently she was the clinical director before he was which I kind of find hard to imagine based on her personality. That and the v fact that I thought you need to be a licensed social worker/ psychologist to be clinical director. Apparently she does have some psychiatric nursing background and I guess that would qualify.

She does know her stuff obviously and knows how order people around LOL! I being one to really connect or not connect (or even be threatened by someone’s voice) I’ve always had problems with Karen. She has a high pitched very tense sound voice always seeming on the edge of high anxiety or being upset. This then puts me on edge making any real connection very difficult. We had some conversation way back when we were hashing out my self injury care plan that didn’t go too well on my end so I never really got over that. I never really want to ask her anything because I’d have to hear that frantic tense voice.

However obviously staff or at least Edith get along with her. Because Edith went to her with the Gyno’s information and my research. She said she doubted the woman’s claims of long term damage certainly not by waiting another month to see if my period would come. She claimed that ten days of taking the progesterone would be a very small dose of hormone and should be fine but she couldn’t garuntee anything which makes me shutter because when people say that in my case it always turns out I’m that rare person that experiences the thing that “shouldn’t be a problem.”

So for the first time in my life I actually really want my period to come! Hoping it will and then I’ll be rid of this gyno mess for like ever.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

surprise follow up with the gyno and being put on progesterone pill

Hey everyone,

Sorry I didn’t write yesterday or the day before.

Tuesday night while getting my meds I was handed a piece of paper saying I had a gyno appointment with an eight AM pickup. I had absolutely no idea this appointment was even scheduled. After I had the ultrasound I was not told about any follow up appointment at all and figured I’d be discussing the results with my primary care doctor.

So I was quite anxious because I wasn’t expecting the appointment. It means changing my whole morning routine. I in general do a lot better with my anxiety knowing things in advance especially doctor’s appointments. I’m assuming this appointment was made by Monday at the latest. Why I was not told then is beyond me. Edith was still here because it was one of her later days and so she came down to talk. She also had no knowledge of this appointment which shows how disorganized things can be around here.

Anyway thankfully getting there was no issue. I was used to the crazy office and had my braillenote and ipod for company. Saw the doctor. Ultrasound was fine which I figured. My first comment to her was why not wait to see if I get my period again this coming month as though I did miss it for six months it did reappear this past month and for all intents and purposes seemed to me to be like an other normal period. However she says to me that we don’t know for sure if this was a “real period.” Yeah I’m totally confused too. She said that I could have “just been cleeding.” Without the whole menstral cycle actually taking place. Well I felt like I normally would feel before my period. Women know their bodies things just seemed fine for me.

In any case. I guess she really is not a wait and see kind of person. For the longest time my primary care doctor and I had thought we nailed down the issue with the increased prolactin levels due to my meds. Though this is a rare side effect, lately I haven’t been averse to rare side effects happening to me. Like the brain zaps that technically shouldn’t have happened last week.

The theory that higher levels of prolactin would stop my period and then when it leveled out I’d get it again held true. The level they got after I got my period this past month was lower so I got my period.

Now she’s saying that the level was never elevated enough to cause a problem and the problem is lack of progesterone. This is the first I heard of it. She says I don’t have enough progesterone which is why I’m not getting my period. She didn’t however as far as I know test the level of this hormone.

So she put me on [ a progesterone only birth control pill. Whicfh is supposed to be very safe with really no side effects. I’m to take it on the twentieth of each month for ten days. Then a couple days later I should get a normal period.

I have no idea. Just so weird you know?

For the longest time since this started with going to thegynocologist which I did not want to do in the first place, I have just intuitively felt like messing with your hormones just isn’t something I wanted to do. Especially with all the psych meds I’m taking and how emotional I am around that time of the month anyway. I just feel like adding something artificial to the natural ups and downs of hormones is just a disaster waiting to happen. As I said mostly due to the carefully chemically controlled brain c hemestry I have going with my meds at the moment. I’m pretty stable. Haven’t had a med change since February which was adding the buspar. Haven’t been hospitalized since over a year. I do not want anything to disrupt that.

If this were some med I desperately needed of course I’d take it and we’d figure out how to adjust my psych meds accordingly. But to me it’s not. The issue is pretty mucdh solved in my head. Yes I didn’t have my period for six months. To me that wasn’t a bad thing. They did an ultrasound my uterus and other organs in there are just fine. I did get my period bback. I will most likely get it again in September. I don’t understand this drama about OMG you need this progesterone and it’s so important ETC. I asked her at one point about any long term effects of not having your period. She said it could have bad effects on the uterus and cause precancer. Even though that sounds scary I don’t know it really didn’t freak me out. Not as much as I’m terrified what this pill will do to my already sensitive system. Like I said before I have been dealing with some weird rare side effect situations as I said the brain zaps. The fact my prolactin was elevated in the first place. People said that June a year ago I shouldn’t have that huge issue with being without my meds for a couple doses but boy oh did I. So while I normally am ok with most meds in terms of not having terrible issues that cause me to stop taking them, minus welbutrin and the seizures, I have been having these weird situations lately that make me even more afraid to do this.

This doctor of course says it’ll be fine. She’s the same one who said there’s no way my meds could have affected my period at all in the first place. I got home and Edith did call Dr. Fyazz. She read Fyazz the name of the pill and my med list and she said she had no concerns. I was temporarily comforted. Doing some research last night however made me less so. First of all could not find any evidence of long term damage from having no period. Besides a slight risk of ostioprosis later in life. From all the ads out there about that it sounds like almost all women get some level of that anyway period or not. It did not say anything about cancer at all. My women friends too say they’ve never heard of this and like me don’t see what the rush is with this.

In terms of side effects with my meds. I read that progesterone and antidepressants compete with the same enzymes in the liver so the antidepressant could have a higher blood level or lower depending. So basically messing up the way the med is processed in my body. With lamyctol they had studies showing that there’s a drop in lamyctol levels while taking progesterone and then rise again during the week you stop the pill which could cause seizures. Hearing the word seizures is enough to make me say no way. The two I had from welbutrin were bad enough! I swear the second one like totally messed up my brain for months after.

Ativan and buspar didn’t have really anything to say for themselves around this. Still the information I got on the other meds makes me feel like I’m not crazy about being afraid around this. Even if I weren’t on these meds, just like I said introducing an artificial hormone into a system where hormones are very particularly balanced and the increased emotions that could cause for anyone is enough to carefully consider. People say well it’s the pills with estragone and progesterone that are the ones that makes you crazy. But obviously this does have issues.

I’ll say again if this was a med I desperately needed I’d do what it takes to take the med and adjust everything around it. But putting myself in a position where to me there seems more than a slight chance of having a big emotional reaction, for really no reason compelling enough for me to take the risk just isn’t ok with me.

One friend says not to refuse because I’ll be seen as noncompliant. Since I’ve never refused anything and I have a pretty good case I’m not too worried. I don’t care if they call me that anyway. I consider myself informed, sorry for not wanting to put myself at risk of hospitalizations or my symptoms getting worse. One friend said as long as I talk with Edith I’m ok. Which oh believe me I will. Most others are like me unsure where this woman is coming from and say wait a month and see.

Well I think I’m totally done with the gyno. I do not want a second opinion on something that I’ve basically figured out what the problem is. I don’t want to go back to her. I really am thinking that once my period came back it will straighten itself out on its own.

Thoughts? Am I really being that much of a rebil for refusing? Have any of you taken progesterone only pil with the drugs I’ve mentioned? Will update you all.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

wondering if it’s worth continuing to make youtube videos

Hey everyone,

A quick post on this subject.

For awhile I’ve been soley concentrating on blogging with I feel extremely good results. I feel I’m starting to connect with others in the mental health community and that’s exactly why I started this. I’m trying to post on subjects that others can relate to and I know that as long as my blog is up others can find and read my posts and hopefully get support or exposed to a new topic or idea they might not have known about before.

I know at one time the youtube community was really thriving in terms of the mental health world. I’m not sure if it’s that way anymore. For awhile I was posting videos and they were automatically going to my twitter account. Yet I don’t seem to be getting the responses I’m getting with my blog. Others seem to agree. I have gotten a good handful of survey results from my Preferred method of online peer support survey and several people wrote in saying they did not prefer vlogging because of the lack of responses or people not updating their videos, I’m sure due to lack of response. One person said that they thought people should continue to do videos in spite of no response and know that it will be out there, your videos even if someone doesn’t respond and they might one day.

I’m not sure and just wonder what you all think, those of you that both vlog and blog, or that make videos more than blog.

It just seems like there’s a lack of community and response. This has been verified by a couple friends I know who were making videos in the early 200s and as time has gone on there’s been less discussion and back and forth connection. Not that its gone away all together its just been less. I think a lot has to do with the lack of video response thing. They took that feature away. Also you’re not able to see your subscribers subscribers, which used to be really helpful for connecting with a even wider circle. This is true for twitter and facebook. I’ve found most of my followers through looking at others followers.

Some people totally give up and just end up taking their videos down. That’s sad too. I never would have connected with Tomy Jamison, a long time youtuber in the DID community if I hadn’t come across their videos and then of course learned about their amazing book.

Same with Jane Alexander. Her videos about everything from her use of meditation and alternative methods to heal herself of mental illness, to life with bipolar, life in a group home ETC. I was very impressed by how articulate she was/is. When I heard she was coming out with a book I thought that was awesome! But then she took down all her videos and that was really sad because it took away one lense through which she could express herself and find others who would share her interest or need the support she so openly and wholeheartedly has to offer.

I’m not sure how useful it is to keep making videos and not knowing if anyone is watching them. But I won’t be taking mine down. If I’ve done all that work might as well have it up there for people to see. Anyway was just wondering people’s thoughts on this.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

crisis textline online volunteer oppurtunity and reaching out for help via text

Hey everyone,

So Edith did a little research and found a volunteer opportunity for me online around crisis line type situations. Since there’s so little in this area.

It’s called crisis textline.

Below is the website and a video on it.

http://www.crisistextline.org/who-we-are/

https://www.youtube.com/watch?v=8Emg3DhPI5E

So basically it’s like any other crisis or emotional support services, like a hotline but instead of someone getting really nervous about having to call and hearing someone’s voice or their own voice saying certain things, they can text. It’s something they can do really invisibly because everyone around is texting. No one around will know they’re doing this. And the counselors like it says on the video are trained to compassionately listen to them and provide resources.

I love the idea of how this was started and how it grew into such a well known services. I’m really happy Edith found this.

I’d love to hear experiences from anyone who has been a volunteer on here and gone through the online training. And what they thought of that and the staff that worked with them, if they were helpful ETC. Also if anyone has used this services and wants to anonymously say how it helped them I’d love to hear that. I think something like this is a great idea.

I know that other places are adopting a online chat, or e-mail component to their already established hotline.

I think the next step like I said in one of my last posts is to somehow have something like this using skype. Maybe my friends and I in our efforts to get this established will one day be on the news for starting a well known and important service! Robert Kingett or course will be the person who will interview us. He’ll be really in demand by then and probably ask for like thousands of dollars for his services but since we’re BFFS we’ll get interviewed for free and then just buy him cookies and ice cream after huh Robbie!

Seriously though I’m really excited about hopefully starting with this. The only thing I wonder about is the accessibility of the platform they use for chatting. But I guess we’ll see that in time. And that will be a nice little review where I can talk a bout the accessibility of the service for the blind. I don’t text ever at all. So it’ll be really interesting to work with people that text.

I welcome your thoughts.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

hate caseworker staff changes!

Hey guys,

So again there are staff changes at Albany care big surprise!

So let’s just start with the past month, because there were a few changes before that but yeah. Two caseworkers I did not like who started at the same time, right when I moved in. So they’ve been there a year and a half or so. Anyway though I didn’t connect with them they were two people well versed in all things caseworker and so could help train new people and at least you know be on staff.

So while I wasn’t upset to see them go I was upset that two people were leaving at once. We got a replacement for one last week. She seems nice and I’m glad they got someone so quickly. For the people that have been leaving there have been new ones coming in right away which is good. Probably due to summer and people needing new jobs and being right out of school.

So they’re still looking for a replacement for the second person. Found out today that another caseworker unexpectedly, to us residents anyway left Friday. We weren’t sure if this was a sudden thing but learned from a caseworker that she had given two weeks notice.

It’s so hard when these people leave like this. Even if they’re not your caseworker the whole thing behind these staff is that they’re all there for anyone who needs it. The PRCS, caseworkers, are the go to people for mental health issues and support.

When I moved in here I thought there would be all these specialists and therapies and just about everyone would have some kind of psychiatric or psychology training. Well for a population of over three hundred you have I believe eight caseworkers

These are more often than not bachilors level people. We have had some with masters degrees but it’s rare. Also though you would expect all would have degress in psychology itself many don’t. They have degrees in public health, education, and one of my favorites forensic psychology. There have been like four with that degree. Just not something I would have expected.

Anyway for many this is their first entry level job. Many have no had any experience with working with people with mental illness before this though obviously they try their hardest to find those that have had the most experience. So it’s kinda all about on the job training. Each caseworker has about thirty clients. The requirements I guess officially are that you meet with the client I think it’s a half hour a week or 15 minutes twice a week or something. That’s like the official by the book thing. I don’t know the exact times because my caseworkers due to my care plan and how I was a bit of a crisis situation for awhile, have been doing almost daily check ins. But so yeah. I was on one to one, so being observed before heading to the psych unit and so was observing myself, an orientation a pretty good caseworker was doing for a new one. Who incidentally did not last long. But anyway. That’s where I heard the official once a week thing. And he said that he barely can see his even that much. Which is so sad.

So in addition to this the caseworkers run groups. There are no other therapists that come in and do this or work here at all. Except a few psychologists I forgot, that do come in and do a couple groups and see clients. However the clients need to have medicare. Which I was really frustrated and annoyed about. I figured as we live in this facility which is covered by Medicaid, we could receive all services regardless of any other insurance. Kind of like when you go to a community mental health center you can get individual therapy group therapy and all this stuff with no limits on it where you wouldn’t get that if you were trying to do any one of these things separately.

But I guess not. These psychologists come in kind of consultation I guess. And only see the ones that have medicare. So anyway the caseworkers run all these other groups. Which are daily half hour groups on different topics. So much of it is an issue of people who are almost in too much of an unstable blace to even benefit from the group. And it’s very disruptive and onfocused. And yeah. I came in 2014 and I was not happy. They convinced me to try some groups and I was like hey yeah why not that’s why I’m here. But honestly so many of the groups just made my anxiety worse and not better. Either because the other members were so disruptive or the group leader could not control the group and was doing things I didn’t feel lent themselves to an organized group. There was also the issue of them having a group called music therapy, that in fact was not lead by a certified music therapist or even expressive arts therapist. Having a minor in that field I really got upset about that. Especially as they were using music in a really scattered way and not realizing they could be hurting people. For example playing a song but then not discussing the feelings brought up by the song at all which could be really harmful to a client. So yeah again I was very surprised.

So you have the caseworkers. The nurses are not psychiatric nurses which coming in I thought at least one of them would be. There is the clinical director who does have his masters and license in social work and is a very solid professional in a lot of ways thank goodness I know the place would fall down without him! He has two positions of his assistant clinical director, and the quality assurance coordinator who are kinda like his right hand people. And are hired internally, and are often the best of the caseworkers. They get promoted which is good. I just really feel that in the layer of the department there need to be way more positions with master’s level people giving these caseworkers way more support than they’re getting. And so that clients can actually have quality individual therapy along with case management. Edith was talking about this last week or the week before. She’s still trying to convince me to see Melissa, that therapist who was gonna see me and I’m still not into it but anyway. She was saying quite earnestly that she’s not a therapist. And we can talk and have a lot of good conversations and she can do a lot of referral work for me, calling places getting resources in place communicating with others in and out of the facility. But she’s not a therapist and there are places she just can’t take me emotionally because she doesn’t know how. And I think that’s a really fair point.

I know it’s a place funded by the state and that has a lot to do with it. And with the IL governor being incredibly unsympathetic towards a lot of things we’re lucky to have the place still open. I just wish the mental health side of care, which after all is what this place is about was better. Often especially for the people who are really doing badly the stratigy is kind of get them to stick to their meds and contain them. Which is really sad.

I know each facility is different though. My friend recommended Margarett Manor which I posted about a month or so ago because the staff turn over isn’t as bad. And when we went there we saw that. The social workers had been there for years not months. Which was good to see. I guess some social worker had left recently after twenty years so yeah. Each place is different. When stuff like this happens it makes me wish I wasn’t in a place with three hundred or more people and the effect that has on staff availablility. Then again I am lucky to have the care I do. Because the staff, not just Edith, but some of the other caseworkers (even though I don’t feel as connected to them as I wish I did) the nurses and especially one CAN in particular really do know me and care about me. Plus I met Jess here which never would have happened otherwise. That said if/when the time comes for Edith to leave, the CAN to leave ETC we might just leave. Because it’s such chaos if you don’t have those true connections. And it’s hard to find those true connections with so much going on and so little staff to handle it all.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

peer support warmlines

Hey everyone,

So last night I wrote quite a long post on people with mental illness like myself volunteering on crisis lines and how that would work in terms of the person’s stability over time, disclosing to the organization, the organization’s acceptance of the issue ETC/. I’d still be extremely interested on people’s thoughts on this. Especially coming from volunteers or even paid staff from these hotline organizations to get their take on the issue. A friend commented for example asking if the organization asked for some kind of mental health background check medical records ETC. I don’t know the answer to this but might imagine that especially for a high profile organization like any of the nation wide ones it might be the case.

So I was very down about this last night. Because I feel for so many of the volunteer oppurtunities out there I don’t have a fair shot at it due to people’s concerns about me being blind. That could be my perception but considering cat shelters won’t even let me hang out with their cats for an hour a month, and others have said similar about other volunteering oppurtunities it’s safe to say it does happen more than anyone would really like to believe. With something like a hotline or online peer support that barrier is taken away.

So I voiced my concerns on my e-mail list. And I’m very grateful for my friend Katie chipping in with her response! She said that in her state they had a warmline, a peer support line specifically run by those with mental illness. This is not a crisis line therefore I would think is less emotionally charged, or at least the stakes aren’t nearly as high.

I looked up Chicago and they do have a warmline though I’m not sure where because they gave no street address just a PO box for mailing in information. I do plan to call tomorrow as soon as possible for more information.

I’m not sure how one would volunteer. It did say something about how recovery specialists were answering the line so I don’t know if you have to have that certificate to be able to do this and what is required for it. If anyone is a recovery specialist in any state and has done this, volunteering on a warmline I’d love to know your experience. I would assume the organization’s attitude towards the ups and downs of mental illness and how that relates to the ability of volunteers to give their support.

Below is a link to all the warmlines in the country. I really didn’t know each state had one! It would have been a great thing for me to volunteer on or even use while in MA as I was going through so much.

http://www.warmline.org/

I think almost every state has one or more of these. Some have a limit of only a 15 minute call. Some you have to leave your number and a volunteer will call you and they don’t take incoming calls. Some take out of state calls and some don’t. This is very interesting!

If anyone has volunteered on a warmline I’d love to know your experiences! If you’ve called warmlines how helpful have they been? Also love to know about this recovery specialist certification and how one gets it, if one needs it to work on all warmlines and just some. Obveously I don’t have a choice but to get this certification if I want to do this because there’s only one in all of IL. Which again surprises me what a big city we are and yet don’t have very many hotlines/ peer lines or anything. Would love to hear your thoughts.

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/

peer support through skype rallying the skype peer support Initiative

Hey everyone,

First of all thank you theresa for writing back!!

So I have something really exciting to talk about. With all the forums facebook groups ETC out there, it would only make sense that there be a community where people who need peer support around mental health issues can come and talk with those who have been there and can offer a listening ear and support. These people reaching out may not have access to other forms of support in person, may not want to call a helpline ETC. Skype has grown in such popularity that it makes sense to me to have this venue.

When researching I found this blog post.

https://skypesupportinitiative.wordpress.com/

I was beyond happy and excited to see someone had started up something that I was so interested in creating. Sadly the original poster in late 2014 had moved into an area without good internet access. So he no longer seemed part of the project.

Unphaised I simply started going down the list of bloggers who had agreed to support him.

Sadly many of those blogs hadn’t been updated since 2014 and so I wasn’t sure if these people were still envolved.

I did write one or two people who had somewhat up to date blogs.

Just now theresa.reed15 responded. See comment under my last post.

I’m so happy to be able to connect with her and hopefully restart this rewarding project.

The objective as I see it, and as I believe the original poster envisioned it, is that there would be a large community of people all with experiences of some kind of mental illness from ideally all over the world. With different backgrounds (I.E, races, sexual orientations, disabilities ETC) willing to take whatever ttime they can to be on skype and willing to text chat or voice chat with people who need it. The volunteers could be there for general support or have specific issues that they feel most able to talk with others about. For example I feel I’d be best able to discuss depression, anxiety, self injury, and trauma, though mostly the effects of emotional abuse over other forms of abuse. I’d be comfortable discussing friendships and family relationships but would not feel best equipped to discuss romantic relationships or sexual issues. Though I’d be happy to listen on these topics I couldn’t bring my own experience to bear on them.

While others perhaps could discuss OCD, eating disorders, job stress ETC. So there would be something for everyone.

Though there would be no set commitment hopefully with a lot of volunteers someone would be available at least a good amount of the time. There’s a lot to consider in terms of safety for everyone envolved as well as ground rules. The original poster said that people could use their individual skype accounts and from what Theressa said that is what she does. I feel this leaves volunteers open to personal harassment or other negative issues from people reaching out for help who might be unstable and want to test the boundaries and patience of those volunteering. I’m wondering if there’s a way to create one account on skype specifically for this purpose and have the different volunteers sign on that way it takes the personal private skype accounts out of things. Then again I’m not sure this is possible and perhaps that’s why things were done this way in the first place.

I think that those who are really in crisis, suicidal acting aggressively ETC should be told firmly but compassionately that this is beyond what we can handle and we’re signing off, after of course giving them a resources such as a suicide hotline reminder to contact in person support ETC. We shouldn’t feel asked to handle or bullied to handle things that make us uncomfortable. I think if a person contacts you and is clear they want to get sexual or use the system for things other than mental health peer listening again they should be kindly told to go elsewhere. I think basically as a group of us we should discuss what we can’t and can handle and ways to keep ourselves and others safe. I think there would need to be frequent meetings, at least weekly or perhaps more at first of the volunteers themselves, whethr skype e-mail ETC to discuss these issues.

I’m trying to think of other ground rules but am blanking out. Oh also maybe making it clear to people the boundaries around time with each individual. As in they get a set amount of time per day like say a halof hour or something but this is not an all day affair. I would worry about people overusing the service due to being clingy/ needing more than we could provide. Perhaps as a group we’d discuss this and reach an agreement perhaps something that each member feels good about.

On the positive side if this takes off I can see lots of benefits. Like eting to work with all sorts of great people passionate about helping others through hard times they’ve struggled with. Also being able to connect with different people from all over that we otherwise might not be able to. I picture it being able to fill a lot of different needs. Such as having volunteers able to speak certain languages so people where English isn’t their native language would have access to support without having to worry about the language barrier. Also those who are deaf or hard of hearing could use the service through text chat. And if we got others who knew sign they could communicate live on skype which I’m sure would be very empowering to those needing support but who don’t have anyone that can sign to them for that process. As it got going I could also imagine weekly support groups on various topics. Like for example an eating disorder support group, group for those with DID, depression and bipolar support, ETC. Some groups could be structured and have different readings/ exercises to discuss. Others can be more open just to talk and give support.

So I’m very very passionat about getting this going and getting as many on board as possible. If you have even a little interest please comment here preferable with an e-mail address so we can talk privately. We could even set up an e-mail list such on groups.io for the specific purpose of communicating about this project.

I look forward to hopefully lots of people to work with on this. It’s not a one person job but I think as a group we can pull it off.

My e-mail is: nelsonsam68

Check out my blog

Matterstosam.wordpress.com

What’s your preferred method of online peer support? Take this quick and anynomous survey!

https://samjess.wufoo.com/forms/zfalva01wb12s0/