Resources and news for people who live with mental illnesses

I wanted to pass along some useful links I recently came across, so this will be a rather brief post with some hopefully helpful information.

The University of Illinois at Chicago has a National Research and Training Center on Psychiatric Disability with some free tools you can find here. These include online workbooks, such as, "Express Yourself: Assessing Self-Determination in Your Life", This is Your Life: Creating a Self-Directed Life Plan, Raising Difficult Issues with Your Service Provider, and more.

I learned about this in an email from the National Mental Health Consumers' Self-Help Clearinghouse. In this email, they also mentioned that an organization called People, Inc. which is in its 12th year of running a peer-support respite center developed a manual on how to create such a program. I first heard about these types of programs at a consumer conference two years ago, here in Florida, when a speaker from Georgia talked about one that they had there. We don't have any in Florida that I know of. Only a few states have them. Basically what these are, are places that are run by consumers, for consumers, to off-set hospital stays, so that people can avoid going to the ER when they are in a crisis by learning to use their own coping skills and resources with assistance from peers. I think this is an amazing idea! I wish I had the ability to start one myself. Basically you need a number of people and some funds to start one of these, and the ability to keep it running, which is obviously no small task. So I don't expect that most people who read this will be able to do that, but just so you have the information, check out this: Hospital Diversion Services: A Manual in Assisting in the Development of a Respite/Diversion Service in Your Area. If you want to see if one of these cool places already exists in your state, then check out this directory of peer-supported respite services.

In further news that was linked in this email I received, low Vitamin D levels (which I happen to have myself) are linked to depression, amongst other problems. I found this interesting especially because I recently found out from blood work done by my rheumatologist that my Vitamin D levels were so low, it requires me to take a supplement by prescription which is 50,000 mgs of Vitamin D per week. That is a lot of Vitamin D in comparison to the kind you buy over the counter, which is like 1,000 mgs per day. I have noticed that this has helped with the joint pains I have recently been experiencing, and that my hands don't hurt nearly as much now as they did before I started this Vitamin D. I am not sure that it has affected my mood at all, but then, I would say I am only mildly depressed in the first place right now, not severely depressed or anything of that nature.

In the future, if you want to get these informative little emails yourself, go to sign up for them at the National Mental Health Consumers' Self-Help Clearinghouse website and click the button to sign up for the Key Update Newsletter.

From elsewhere on the web, I found out about John Cadigan's documentary on living with Schizophrenia, called People Say I'm Crazy, which you can read about or purchase online. It is billed as "the only documentary about Schizophrenia by someone with Schizophrenia". You can also go to this website to share your story of life with Schizophrenia.

I found out about that from the Eli Lilly Center for Reintegration.

Prozac Nation: a return to the land of the SSRI

Well, I saw my doctor today, and talked to him about the OCD thoughts. He said it did sound like OCD type symptoms because they are thoughts I don't want to be having and I can't get rid of them. I have pretty much known this for years, but I just never really addressed it recently with a doctor. I mentioned how Prozac seemed to help with these thoughts in the past. He said that he couldn't ethically prescribe me any more medication (like I said before I also don't want any more medications myself), so the only way to put me on any Prozac is to go off something else. So I agreed to reduce my Wellbutrin a lot, down to 150 mgs, and try 20 mgs of Prozac. I'm pretty sure I was on at least 40 mgs of Prozac when I took it before, but we'll see if this does anything. I have to say I am pretty nervous about this. I definitely know that Wellbutrin helps me with depression, and I've been on it most of the time (whenever I had medical care) for the past 13 years or so. I am afraid to go off of it. I don't want to get horribly depressed and unable to function. Also, I just read one of my old blog posts stating how depressed I was while on Prozac. So I am unsure now that this is the right thing to do. But I guess I can try it and see what happens. Even though this seems like a very cliche thing to be doing.



The other thing we discussed was this research study they're doing at my community mental health center. The purpose of the study is to see whether two antipsychotic medications are helpful to people or whether it is better to only use one, and two have too many side effects to be beneficial for most people. My psychiatrist mentioned the last time I saw him that I could go into this study and there would be a 50 percent chance I'd be put into the group of people who goes onto only one antipsychotic, meaning I could stop taking Risperdal, and there would be a 50 percent chance I would be in the other group which means I would stay on both medications. Basically he doesn't want to take me off Risperdal, so this was being offered as an option. He told me today I have the choice of doing this or of staying on Risperdal for a while longer to wait and see how I'm doing before he will reduce the dosage. (Of course, I also have the option of refusing to get these shots or finding myself a different doctor who will not prescribe me Risperdal, but I didn't mention that.) So I said I would talk to this woman there on teh phone about possibly going into this study.







After talking to this woman, who I really couldn't understand because we had a terrible connection, and hearing basically no reasons why I should want to enter this study other than that it would be helpful to her if I did, I thought, well, I don't think so. I can't really see the point in it. I do not want to be on these damn injections of this fat-inducing substance that I have been on for years anymore. I want to be off of them. I do not want to leave it up to chance as to whether I will go off them or not. I just want to stop the damn medication.


I can see the benefit of them doing this research, and I can see that it is a good idea for it to be done. But becoming a guinea pig for the purpose of some study isn't really all that enticing. As my former therapist said when I first told her about this at my last appointment, "How would this benefit you?" I don't see how it would. Not that I'm a totally selfish person, but I'm not that worried about making the $200 over the course of a year that you can get from being in this study and going to appointments and evaluations for this.


But, being afraid to say no to someone right away, I told the woman I'd come in to talk to her about it. I think I'm going to cancel that because I don't really feel that this is worth my time and energy. Plus, she wanted me to come in at 8:30 on a Monday morning to meet with her. I don't have to be at work until 2:00 PM on Mondays, and I am not a pro at waking up early and making it to early appointments. It is hard enough dragging my leaden body out of bed to get somewhere in the morning. I see no point in doing something I don't really have to do when I could be getting some sleep. Especially considering on many nights I don't fall asleep until 4 AM with the usage of copious pharmaceuticals I've written before.



Chelle left a comment about the antibiotics causing nausea, and I know many of them do so for me, but unfortunately this problem with gagging and nausea started before I started taking the antibiotics. My rheumatologist had some obscure reason for putting me on antibiotics, and I honestly don't understand what it was. Normally, I don't take things without knowing the reason, but she seemed to think it would do something to the inflammation and joint pain I was experiencing if I took these antibiotics for two months. I will have to go back to see her again to find out what the heck the reasoning to this was, but honestly this doctor's office makes you wait up to three hours before you see the doctor after you enter the waiting room, and I don't have the desire or the time to do that again right now. It takes so long to see her, I've seen people walk out after waiting for a while and say that they didn't want the appointment anymore because the wait was so long. The last time I was there, these elderly people in the waiting room all clapped when my name got called by the nurse, because I had been waiting the longest and we were all complaining to each other about the ridiculous nature of sitting in a doctor's office waiting room two hours after your appointment time. If she wasn't a good rheumatologist, I would never go back to her. But I have known her for years now, and I don't really want to start over with another one.


Enough of my complaints! Everything is not bad. I will see what happens with this Prozac. I wish I had a better memory for the ways that every med I've taken has ever affected me, but I was never interested in keeping records of that kind of thing, so I don't. This is going to be like the fourth or fifth time I've started on Prozac in my life, so who knows if it will even be effective. But I guess it's worth a shot.







As always, thanks for listening to me gripe.

Acid reflux mixed with obsessive thoughts equals the problem

I was thinking about my nausea and vomiting and gagging that is such a problem these days, (which I mentioned in my last post) and came to the conclusion after some reading online that it is likely GERD - acid reflux disorder. I have been told by doctors before that I might develop this because of Sjogren's Syndrome, and it seems that I now have all the symptoms of it.

So, the thoughts are still a problem. The thoughts are there and often there when I'm nauseated or vomiting. But I don't think the thoughts are the entire problem, I mean as far as the physical issue goes. I used to take a medication for acid reflux and stopped taking it a long time ago because I am on so many medications that it scares me to take things if I don't know that I definitely need them, but perhaps I should try going back on that medication. It's called Omeprazole. In fact I just took it tonight because I thought I would give this a shot before I resort to asking for another psychiatric drug.

But I did think about Mary's suggestion of asking for a different drug rather than a new drug. It is just that it has taken a while to get to this regimen I'm on now which, aside from the obsessive thoughts, is pretty effective.

I know that the obsessive thoughts must be addressed regardless of whether or not they are making me physically sick, because they cause me a lot of ridiculous mental stress. The thoughts are about all sorts of gross things, and generally the same things repeatedly, and the problem is that I don't have an effective method for ridding myself of them. I do know that when I took Prozac I thought it helped with my obsessive thoughts. But do I want to go on another drug? Not really.

This is what I'm taking right now:
Latuda
Risperdal Consta (injections) (highest dose it comes in)
Clonazepam (low dose)
Vistaril (for sleep)
Ambien
Wellbutrin *450 mgs (high dose)

Then I also take two thyroid medications for hypothyroidism, a medication for lack of saliva and dry eyes caused by Sjogren's Syndrome, a medication that's a muscle relaxer for my Fibromyalgia, and sometimes Naproxen for joint and muscle pain, and right now (temporarily) an antibiotic (I honestly do not understand why  I am on this), and an antifungal drug which is necessary because of the antibiotic, and 50,000 mgs once a week of Vitamin D because my blood levels of that were so low (this is like an entire bottle of the over the counter Vitamin D). And I take a large dose of Melatonin every night because it's the only way I can sleep.

And now, perhaps, I'll be back on Omeprazole.

I think that's enough drugs for one fatty, overwhelmed liver to handle.

My goal is actually to get off Risperdal, and I am still hoping that will be possible, because I attribute most of my weight gain to Risperdal and Seroquel. I finally got off the Seroquel last year, which is why I never have a decent night of sleep anymore to this day, and I still didn't manage to lose any weight after that honestly. I didn't gain weight, but I didn't lose it either. (I need to put a lot more effort into this I'm sure). And I'm pre-diabetic. So I cannot afford to be overweight. All my doctors have told me that losing weight would be helpful and I just can't stand the thought of being on these Risperdal shots anymore when I gained literally 100 pounds on them. That is a lot of weight. And I don't know how to even describe to you how difficult that's been to deal with, mentally. So my psychiatrist seems to think I'm on too many medications, and I agree. And the first one I think should go is Risperdal.

I don't know what can be done about the obsessive thoughts because I don't want to change the other things I'm on right now since I don't want to lose the stability I have with those meds. I've been thinking that perhaps therapy could help me with the obsessive thoughts if I found someone who really understands them and knows how to address them and accepts my government insurance. Not sure I really believe this would work though.

OCD 123

So I have written about it only a little bit before, but I have some OCD type problems. I don't believe I have full-blown OCD, but my therapist would point out to me over the years that these thoughts I have were "OCD thoughts". I also had Anorexia for many years when I was younger, so I have a history with the cousin of OCD.

It's not important what the thoughts are about. But my therapist would say it is important and that if I never talk about it or think about it on purpose, the thoughts will have more power than if I say them out loud.

So....okay, I have these disgusting thoughts about bodily functions. I'm slightly paranoid about such functions. I have the thoughts when I eat, and when I go to brush my teeth, or take medication, and the thoughts are so horrible, they make me gag. Recently, for some reason, it's been worse and the thoughts actually make me vomit sometimes. I try to control the thoughts by thinking about something else, but I have this terrible gag reflex that kicks in, and it makes me ill. I do not know why this has been happening the past few months more than it did before the past few months, but whatever the reason, it is kind of a problem. Particularly since, I don't have a therapist anymore.

I don't know exactly why I would have these thoughts, but I've had other OCD type thoughts before about different things. It never made me sick though. It just made me anxious. This actually makes me sick. It makes it difficult to even eat sometimes. It makes it difficult to swallow pills or brush my teeth. This gag reflex and the thoughts come in at the same time. I thought at first that actually I was gagging because of my medication, but my psychiatrist thought that was not a side effect of Latuda. Then I realized that every time I gagged, I was also having the gross thoughts. So I have been, at times, confused as to what was actually causing the gagging and if the gagging was really caused by the thoughts. But I had thoughts a long time before the gagging started, so I am pretty sure they are the cause.

I am trying to remember how long this is been going on for and I'm not really sure. I know it has been since around this past spring or so that I have noticed myself gagging, and then it increased, to the point that it now happens several times a day, every single day. The thoughts are there so much it is almost impossible to avoid them. I have a hard time dealing with even going into a public bathroom or changing my cats' litter box because I get nauseated by it and the thoughts are horrible. Sometimes I go to brush my teeth, and start vomiting. This is not a pleasant experience.

It is kind of a joke in my family that I am like this. My younger siblings will make jokes about gross things just to gross me out because I will freak out and scream at them to stop it before they make me throw up. I suppose I have been that way for years. But it is a real problem now, which it wasn't really years ago. And nobody  really knows about it except my former therapist.

She told me to think about it on purpose so the thoughts would lose their power, but I can't make myself do that because it is too disgusting. I can't force myself to think about disgusting things that I am trying to stop thinking about. But I should probably try that approach just to see if it works at all.

It's embarrassing, and the worst part is even talking about it would make me sick, and humiliate me too, so I can't tell anybody about this. But I am tired of gagging all the time. Many things have made me nauseated throughout my life, but I don't remember it ever being this much of a constant problem as it is now before. I am wondering if Latuda can worsen OCD type symptoms, but that seems unlikely. There is not as much research on Latuda as there is on older drugs though, so it is possible that this could be an unknown side effect.

I think I will bring it up to my doctor when I see him next week, because I have never discussed this problem with him before, and it has become increasingly bothersome.

The other types of OCD symptoms I've had before are not really problematic. For example, I have a habit of counting which I've had all my life. Like, before I get out of bed I must count to fifty (this is just a random example) forwards and backwards or 100, or something. I would do that when I was nine years old and I still do it sometimes now. But that doesn't make me physically sick. That's just a weird quirk. The gross thoughts are more of a problem, and I want to be rid of them. The only thing that I know for sure which has helped me with obsessive thoughts is Prozac. I only know that it helped me because I've read the posts where I wrote that very thing on this blog. But the last thing I want right now is to go on yet another medication, and I refuse to ask for one. I don't think my doctor would put me on another pill at this point anyway, but I definitely do NOT want any more pills. Taking as many as I already take is bad enough for my liver which has been breaking down pills for 21 years. So I don't know what can be done about these thoughts. If you have any suggestions I am open to hearing them.

Inspirational Poems

This is a poem I like that comes from Alanon. I first read it when I was a teenager and went to Alateen meetings. I was involved with that around age 14-16, going to meetings at a church and at my high school. My mom got me involved in it. In retrospect, it probably would have been a good idea to stay involved in it.

Anyway, I don't believe in the typical idea of God or anything, but I do like this poem and find it useful for anyone with any type of problem, particularly mental illness or substance abuse or family dysfunction, etc, because even though with a chemical imbalance causing a mental illness you can't really "choose" to be happy, there is still something to be said for the benefits of the cognitive behavioral and dialectical behavioral therapy approaches and trying to find happiness despite having an illness too:

"Just for Today"


Just for today
I will try to live through this day only,
and not tackle all my problems at once.
I can do something for twelve hours that would
appall me if I felt I had to keep it up for a lifetime.


Just for today
I will be happy.
This assumes to be true what Abraham Lincoln said,
that "Most folks are as happy as they make up their minds to be."



Just for today
I will adjust myself to what is,
and not try to adjust everything to my own desires.
I will take my "luck" as it comes, and fit myself to it.

Just for today
I will try to strengthen my mind.
I will study. I will learn something useful.
I will not be a mental loafer. I will read something
that requires effort, thought and concentration.

Just for today
I will exercise my soul in three ways.
I will do somebody a good turn, and not get found out;
if anybody knows of it, it will not count.
I will do at least two things I don't want to - just for exercise.
I will not show anyone that my feelings are hurt;
they may be hurt, but today I will not show it.


Just for today
I will be agreeable.
I will look as well as I can, dress becomingly,
keep my voice low, be courteous, criticize not one bit.
I won't find fault with anything,
nor try to improve or regulate anybody but myself.


Just for today
I will have a program.
I may not follow it exactly, but I will have it.
I will save myself from two pests: hurry and indecision.


Just for today
I will have a quiet half hour all by
myself and relax. During this half hour, sometime,
I will try to get a better perspective of my life.


Just for today
I will be unafraid.
Especially I will not be afraid to enjoy
what is beautiful and to believe that as I give to the world,
so the world will give to me.


And this is a poem by May Sarton, who dealt with depression and wrote about it in some of her books. She has published many books of poetry and I highly recommend them. She is a very talented writer.
"Now I Become Myself"
by May Sarton


Now I become myself. It's taken



Time, many years and places;



I have been dissolved and shaken,



Worn other people's faces,



Run madly, as if Time were there,



Terribly old, crying a warning,



"Hurry, you will be dead before--"



(What? Before you reach the morning?



Or the end of the poem is clear?



Or love safe in the walled city?)



Now to stand still, to be here,



Feel my own weight and density!



The black shadow on the paper



Is my hand; the shadow of a word



As thought shapes the shaper



Falls heavy on the page, is heard.



All fuses now, falls into place



From wish to action, word to silence,



My work, my love, my time, my face



Gathered into one intense



Gesture of growing like a plant.



As slowly as the ripening fruit



Fertile, detached, and always spent,



Falls but does not exhaust the root,



So all the poem is, can give,



Grows in me to become the song,



Made so and rooted by love.



Now there is time and Time is young.



O, in this single hour I live



All of myself and do not move.



I, the pursued, who madly ran,



Stand still, stand still, and stop the sun!

Protect the internet: protest SOPA and PIPA to keep free speech ours.

Today the internet is on strike. Check this out, and contact your Senators and Representatives today, if you live in the United States, before the internet is no longer free for use. Some people are also protesting this in person today. Google has a great petition you can sign. Wikipedia has some facts. And here are some sites that are participating in the strike.

PROTECT IP / SOPA Breaks The Internet from Fight for the Future on Vimeo.

dysfunctional families

Happy families are all alike; unhappy families are all unhappy in their own way.
-Leo Tolstoy

I had to remove my last post, only because this blog isn't really private enough to write openly about my family, since there are people in my family who have read this blog (or maybe just one person at some point anyway).

Suffice it to say, my family is causing me a lot of unnecessary stress, and it's really getting to me to the point that I can't deal with talking to them.

There is a lot of mental illness and a lot of alcoholism in my family. I have to say that most of the people with these problems in my family do little to nothing to get help for their problems, and in some cases would not even admit they had the problems, even though the problems have been diagnosed by professionals and/or are blatantly obvious to anybody who knows the person.

I'm not saying I am better than them because I do see a psychiatrist, and admit I have a mental illness, but what I will say is that I am tired of dealing with self-centered, sick people who refuse to get help and don't seem to care. I am tired of feeling responsible to help people who would never bother to help me with anything and who don't care to help themselves either. I am tired of feeling  guilty because this bothers me. I am tired of feeling selfish if I'm not spending all my time worrying about someone.

I think to some extent we all have to make a choice to seek help. Particularly when you have an addiction problem, you have to make the choice to stop ingesting the addictive substance. If people make the conscious or, at least, subconscious choice, to not give a damn about it, then they often exhibit heinous behaviors, destroy their lives, and wreak havoc on the lives of everyone around them.

I'm not interested in being involved in this kind of scenario anymore.

Someday I will be more free to explain exactly all that I am alluding to here, but unfortunately I can't do that at the moment, so if you read my deleted post than you will know more than the other people reading this.

I will just say that sometimes relatives are not helpful to be around or talk to. I have enough trouble dealing with my own illness and managing my life without worrying about numerous other people's problems all the time. I can't deal with their drama right now.

My name is Jennifer, and I'm a family member of alcoholics

I've mentioned here that there is alcoholism in my family. One of my family members who is an alcoholic is in a real crisis right now. Having already lost pretty much everything to the disease in recent years, this person is now at the point that if he doesn't hit rock bottom and get some help, he's going to be living on the streets. I am also worried he might die. I find this overwhelmingly upsetting. It has been an ongoing problem - a crisis here and there, for the past couple years, and it is tiresome. It is hard for him, of course, but it is also hard on people around him, like me.

I have come to realize that I play a part in my alcoholic family, and I am an enabler to some extent. I try to help, to get help for him, to offer to do things for him, and to generally do what I can to help fix the situation, which is obviously an impossible thing to do. I do this because I love him, and it genuinely pains me to see someone suffer who I care about. I also do this because I am from an alcoholic family, and this is what I was trained to do. This is the result. If you read about alcoholism, you read about people who are enablers or helpers or martyrs or other not-so-positive things because they are in that family and, even if they never pick up a drink themselves, they too have part of the family disease (or what some call a disease). I am one of those people.

I have written here about my qualms with twelve-step groups, but tonight, out of desperation and genuinely not knowing what else to do, I went again to an Alanon meeting - the first one I had gone to in about a year and a half. I am actually  glad I went. I don't embrace the Higher Power concept, and I have problems being in a group where there is so much focus on that, but being in a room where people really understand what I'm going through, the feelings I'm having, the desire to help but the need to learn that this is not really helpful at all....this is good for me.  I need something like this. At least right now.

I don't have a therapist anymore. The mental health center had allowed me five visits with my therapist for free - and those visits ended. So she is technically not my therapist anymore. The first time the therapy ended was months ago, but then when I had my psychosis start up, they thought I needed to go back. So I did, and then that ended. So now, I really don't have anyone to talk to. It's okay. I mean, I wasn't going to stay in therapy for the rest of my life anyway. I think there is only so much you can learn with the same therapist, and my therapist was good for four years. I will miss her, but I will be alright with this, because I knew it was coming for a long time. I just don't have the money for the therapy. Medicare won't pay for her, and that is what it is. It has been ongoing for a while, and the mental health center gave me a lot of low cost therapy for months before I got the free therapy for five sessions. So I have technically ended therapy now for the third time in the past couple years with this therapist.

The point is, I need someone to talk to. Maybe I could meet an understanding soul in an Alanon meeting to talk to on the phone once in a while who will really get where I'm coming from. I have a couple friends I've talked to about it, but I need more people to be able to talk about it more often. And I need to improve myself, to stop being a caretaker all the time, to stop trying to solve someone else's problem for him. I can't solve it. He is going to live or die at his own hand.  I will do whatever I can to help him if he's willing to get help. But if he's not, then there is really nothing I can do at all, except remind him that I care. I can't support another person financially, even if I wanted to do so or if it was a good idea to do so. I can't have someone live on my couch, because my landlord has a lot of rules about who lives here since it's a mental health agency through HUD housing that owns the place. I can't give him a job or a car or a house. I can't do a lot. He has to dig himself up from the bottom, and I hope, desperately I hope, that he will.

It is hard to watch someone you care about suffer. I know that, in the past, when I have suffered from mental illness, people watched me, and they didn't know what to do or how to help, and mostly they didn't help. My mom tried, but nobody else really did, until I was finally hospitalized for five months and got professional help that worked. It is going to take a trip somewhere - if rehab is possible without insurance and without money - to help my family member. So far it looks like no rehab is possible without insurance or money, but if it is, he has to take some initiative and call the phone numbers I gave him to the places I already called for him, and he has to talk to them himself. The people there already told me this. If he does this, he has a chance at recovery, I think. If he doesn't, then I don't know how long he can continue to languish like he is right now, with no money and nowhere to go.

It's hard not to blame myself. I think, if only I could fix this....but this is not my fault.  This is not my problem. I did not create this problem, and as they say in Alanon, I cannot cure it or change it. I am not the cause. I must remain strong in my resolve to detach and remain supportive but not take on the other person's problem and let it destroy my own sanity, occupy all of my thoughts, and distract me from my own life. I feel guilty even saying this, but this is what the experts say, what Alanon says, and what probably makes sense. If someone doesn't want help, then, they can't always be helped.

I gave him the AA hotline, the suicide hotline, and the numbers two detox centers. I called the detox centers myself, also called his insurance, found out he doesn't have any insurance anymore, and called him repeatedly to tell him all of this information and to try to help him. I offered to drive him to the detox, to drive him to AA meetings. He didn't want to go. So what else can I do? If someone is going to rent a motel room to do nothing but sit alone and drink and lose their job and get kicked out of yet another home, then what can I do? I don't think I can do much else. So I have to detach from this situation, as much as I can, or I'll be a constant nervous wreck, vomiting and crying and feeling ill, and being totally distracted. And I can't afford to live like that. Not again.