This is a great presentation/speech. I hope you can watch and share it! It really needs to go viral! Hopefully the correct video will play. It is a TED talk about mental illness and community.
This is a survey by NAMI about experiences with ER mental health services. I believe the survey is for both people with mental illness and friends/family who have experienced the ER mental health situation. Please take the survey to help improve ER mental health treatment. I hope by taking this survey ERs will listen to how to improve things!
Recently I made a medication change (with the help of my psychiatrist), and as you might know from your own interactions with meds sometimes it can cause issues to develop. I was happily strolling along for a couple of months with a few bad days here and there, and then I started to notice the bad days piling up more often. I was really irritable, sad, became unmotivated, and suicide starting sounding better. I became alarmed, because I knew something was going wrong, but how was I supposed to explain to my psychiatrist that “irritable” is a symptom for me?
The problem with mental illness is that even when we fit into a diagnosed category of disorder, we all have our own unique symptoms that we need to pay attention to. I have schizophrenia, but for years I didn’t appear “sick enough” to most doctors, because they expected me to be talking to the walls and completely disheveled. There were times when I was talking to the walls and completely disheveled, but the doctors rarely saw me during those times, so they figured I wasn’t that bad off. Because I could communicate relatively well most doctors dismissed schizophrenia as a diagnosis.
Over the years I have come to realize what my symptoms are (for the most part), and now that I am doing better I can advocate for myself more effectively. However, it still isn’t easy to call up my psychiatrist and say “wow, I’m extremely irritable, this isn’t normal for me, and I need to increase my meds.” Most psychiatrists won’t believe that “irritable” is in any way related to schizophrenia, but for me (and many others) it is. I don’t become psychotic over night, and I don’t believe that I should have to be talking to walls in order to get the help I need. I also don’t believe that people should have to try to kill themselves before mental health professionals take people seriously.
Unfortunately, a lot of mental health professionals won’t take a person seriously unless they are debilitated to the point of needing to be hospitalized. So, as people living with mental illness or people who love people with mental illness, we have to be very proactive about getting the help we need before it turns into a crisis. Think about the good days and what you are like on those days, and compare them to the bad days. What are YOUR symptoms? How do things manifest in your day to day life? You might want to write down what you know your symptoms to be, and take that list with you when you talk to your doctor. It isn’t easy or fun, but we have to advocate for ourselves even when we are not doing our best.
In the end, you know your symptoms the best. Remember that you aren’t “crazy” for wanting to feel better and you aren’t making up excuses. Be pragmatic and straightforward, and get the help you need.
Some of you may remember that I have been getting Haldol Decanoate injections for the past 13 years or so in order to keep my schizophrenia in check. I wrote about it here: https://kristinbell.org/2012/06/14/the-haldol-injections-after-10-years/. Recently Abilify Maintena, the long-acting injectable form of Abilify came onto the market. After discussing it with my doctor, we decided to give it a try. I have been taking the oral form of Abilify along with the Haldol Dec injections for about two or three years with no adverse side effects, and it has really improved my functioning as well. The long term risks of side effects like tardive dyskinesia are much higher with the Haldol than with the Abilify which is one reason why we decided to switch. Abilify also has fewer metabolic side effects (things like less weight gain are associated with Abilify). We are taking a giant leap into the great unknown. I got my first injection of the Abilify tonight. It comes in an injection kit with sterile water that must be mixed with the powder Abilify and then injected. The Haldol is an oil-based mixture that is also injected. I am hoping to also have less sedation side effects from the Abilify. I’m just crossing my fingers that all will go well. I will keep you all updated as time passes. It is also interesting to note that Abilify Maintena has been approved for much longer in many other countries, but it just became available in the US. The US also lags behind many European countries in the administration of injectable forms of antipsychotics. Personally, I think that all people with chronic schizophrenia should give injectable antipsychotics a try. The injections don’t hurt and it is much easier to manage than oral medications. I’m including some pics of what my injection kit looks like too. It looks complicated, but it really only took about 4-5 minutes to administer including reading the directions! I’m saying Hello to Abilify Maintena and goodbye to my old friend Haldol Decanoate!
Hi! Just wanted to post this to ask people to please sign the petition to the President and Congress to increase funding for research related to finding cures for mental illness. It only takes a minute! Please share with your friends too!
Hey Everybody! I’m really excited about this new show on TNT called “Perception.” http://www.tntdrama.com/series/perception/
It stars Eric McCormack (of Will & Grace fame) as a university professor, author and crime solver who is also living with schizophrenia! I’m always skeptical of depictions of people with mental illness on TV and in movies, because they usually make them out to be psychopathic killers or something. I’ve watched the first two episodes of the show so far, and I think they do an excellent job of making the character seem like a regular human being! It is so fantastic! They use the hallucinations as kind of a dramatic device and employ some other Beautiful Mind-esque devices to try to make it like the viewer can see what the character is seeing. Some commenters have argued that it doesn’t show the horrific aspects of schizophrenia enough, but I personally like that they are showing him to be a regular person, and an intelligent one at that! I like that they show him holding down a job, interacting with people socially, and using the help of other people to reality test. I’m excited to see how the character and the show develop and I hope it gets picked up for another season! Please check it out if you get a chance! Again, it is on TNT Monday nights. Here is the TNT link: http://www.tntdrama.com/series/perception/
I’m taking a Women’s Studies course at school and we are looking at the topic of Motherhood. This week we are discussing motherhood and disabilities, and I came across this wonderful video series that is made by a student about a mother who has schizophrenia and how it has impacted her life and the life of her daughter. I think he did a really good job! The video is divided into four parts and I hope you watch all four parts! :)
I first wrote about taking my Haldol injections back in 2007 in https://kristinbell.org/2007/07/23/the-haldol-injections/.
I wanted to report that yes, I’m still getting the Haldol injections now once every three weeks. Haldol is an antipsychotic medication used to treat psychosis like that found in schizophrenia. I have schizophrenia and started getting the Haldol injections back in late 2000…I guess it was November or December of 2000. The Haldol injections combined with all the other meds I take have been a miracle for me.
So far (knock on wood) I haven’t had many side-effects from the medication. I haven’t yet developed tardive dyskinesia. I hope that I don’t.
I had to start getting the Haldol injections, because I couldn’t take my medications as prescribed. It sounds like a simple enough task, but my illness got in the way of me adhering to my medication regiment, and I’d wind up going off my meds and going crazy. I’ve had a good run with the Haldol. I haven’t been hospitalized since starting it, and if you know anything about people with mental illness, that is quite a feat! :) Without the injection form of the medication I’m pretty sure I’d still be bouncing in and out of insanity and in and out of hospitals.
Haldol is a powerful medication, and not one that people enjoy taking. It can cause a lot of sedation, but in the right dose with the right brain it is a miracle drug. It doesn’t work for everyone, and I probably wouldn’t extoll the virtues of it if I was taking the oral form of the medication. With the injection form of the medication I am able to take less of the medication while still getting the benefits of it. I believe that there are also short-acting Haldol injections for acutely psychotic patients, but I am getting the long-acting injections which metabolize over a number of weeks.
I know that a lot of people, including people with schizophrenia and other brain diseases, are afraid of getting injections of medication. If you are paranoid and psychotic, like I was when I first got the injection, it is terrifying to get the injections. I actually believed that the doctors were giving me a lethal injection to kill me when I got my first dose. It turns out that it was the best thing that ever happened to me, not the worst. Now there are other medications that come in injection forms too. Meds like Risperdal and others. If Haldol doesn’t work for someone then maybe one of the other injectables will work. At any rate, I think it is worth giving them a try. It may take awhile to get used to the meds and to get the correct dosing, but it is worth it in the end.
I thought I’d do a little mental health update, since it has been quite some time since I’ve blogged about my overall mental health. As some of you dear readers may know, I have schizophrenia. I first had issues with it when I was about 15. My first hospitalization was when I was 16. Towards the end of 2000 I got mostly stabilized with my Haldol injections and Zoloft. I haven’t been in the hospital since then! Yay! Quite a long run I’ve had and I hope it continues! For quite some time I had problems getting things done, being motivated and feeling down…that sort of thing, even though I was mostly fine. I think it was last year that I started taking Abilify and it has made a HUGE difference! I’m still taking Zoloft, Buspar, Haldol and some non-psychiatric meds in addition to the Abilify, but the addition of the Abilify was great. I’m doing really pretty well these days. Sometimes I have anxiety, although I think it might generally be related to performance issues with school. I also tried taking Topamax to help with weight loss, but I thought it might be making me stupid and giving me more anxiety, so I quit taking it. I think overall, the Topamax was not helping. It seemed like I was becoming less motivated and more sad with it. I also had that bad anxiety day that I wrote about recently.
So, I think I was just hoping for a magic weightloss bullet with the Topamax. It didn’t work. Boo. I have lost about 90-100 pounds though which is good, but I still need to be less sedentary. I’m also a believer in fat acceptance, but of course it is hard to say that I never want to try to lose weight. I would be an even bigger believer in fat acceptance if I wasn’t actually fat I think!!! hahaha. I know that sounds ridiculous, but it is kind of true. I can accept the hell out of everyone’s fatness, but my own! lol.
Anyway, enough about fatness for now. What I want to say is that I’m doing well on the whole. My sleep patterns have improved with my sleep apnea machine, and while I’m not sleeping on any kind of normal schedule yet, I’m getting sleep every day and mostly at the same time! I still tend to be somewhat paranoid, but I’ve found that opening up with people over the years on the internet has really helped me to realize that I don’t need to be afraid of everyone in the world. I still have some delusional thoughts that blow through my brain now and then, but I consider them to be more of a slight annoyance than a big deal right now. But seriously, it is because of the medicine. If I wasn’t taking my meds, and doing so faithfully, I would be in and out of hospitals and massively psychotic. Some people don’t believe me, because I “seem so normal,” but I have to wonder what THAT means anyway? And, I don’t know, it seems like I should be insulted when people say that to me, but I’m not sure why I find it so insulting! I don’t necessarily want to be abnormal, even though I pretty much am, but I think it just bothers me that people attach a kind of value judgement to the term “normal” as if “normal” is superior. It is definitely easier to live in the world if you are “normal,” but it isn’t the only way to be in the world, that’s for sure. Normal is just such a peculiar word, no?
So, I’m doing fine. Some anxiety here and there, some weird thoughts here and there…a depressed mood now and then, but mostly just good. Which is nice. Thank you meds and thank you lucky stars! So, that’s my update after living with schizophrenia for 24 years. Wow! 24 years! Man am I getting old!!! LOL.
I was just informed of this great project called Schizowhat? that is a website aimed at raising awareness about schizophrenia. For those of you who don’t know, I have schizophrenia. I was first diagnosed when I was about 15/16 years old. I hope others of you who are interested or in some way impacted by schizophrenia will check out the website and contribute! Let’s fight the stigma! Yay!
I’m very pleased to report that this last term at school went great! I took the first term of Calculus and Intro. to Linear Algebra and got A’s in both classes! I also had a really good time with the classes. I had great teachers too! I have seen a real improvement in my ability to actually get to classes because of my bipap sleep machine and have seen an even greater increase in my ability to do homework and concentrate since I started taking Abilify last January. Doing well in school has always been important to me, but because of my schizophrenia and sleep problems I have had a lot of issues with being able to attend and get through classes.
When I first became ill when I was 15 my grades really suffered. For the first time in my life I wasn’t a straight A student which was quite disheartening. The last two terms in school I have been feeling a lot like my old self for the first time since I was 15!!!
Anyway, this last term was great and a real ego booster! I just hope I can keep up the success! :)
I was reading a book by Marsha Linehan, the creator of Dialectical Behavior Therapy treatment for people with Borderline Personality Disorder, and I was struck by the theoretical concepts that she was discussing in the book. At the same time, I had been thinking about my friend who has BPD. I thought about the unending pain she suffers and how there is so much rage and turmoil in her life. I wanted to incorporate both Linehan’s concepts and aspects of my friend into the art journal that I just started working on as a collaboration with my friend, John.
So, John began the journal by preparing many pages and providing inspirations and prompts, then he mailed it to me and it was my turn to lay down something on the pages.
The first thing I did was use a handheld scanning pen to scan vertical snippets of text from the Linehan book. I then printed out the scans and cut them up into various pieces. You can just make out some of the text, like the words “dysfunction” and “BPD” and “DBT” if you look closely at the first piece.
Next, I began by glueing down the various text scans onto the journal…all over the top of what my friend John had already done. You can see bits of the yellow wash that he had laid down already. I added handwritten elements with text that expressed how I felt about my friend with BPD. Some are “rage and flounder,” “escape impossible,” “improbable at best,” and “hermedically sealed” (which I spelled wrong, but ends up being seen as “medically sealed” in the final product which I think is just as good and apt).
I colored over parts with a reddish pen, because for me, reddish colors always seem to represent pain and suffering, if not outright blood. I also used my label maker to add “A FACE TO YOUR PAIN,” because I felt like this was my way of giving her pain a face. There is also a scrunched up scribble of a face contorted with pain on the journal page just above the label. Then I started adding layers of cut out graph paper, because I wanted part of the image to have some linear and quantifiable aspects, like the discreet squares of red in contrast to the smudgy blob of red elsewhere. I also added a cut out plastic sleeve that I applied color to.
I then decided that I wanted to cut out some of the page and expose the treatment that was done on the other side of the page by my friend John. I likened this to an escape hatch to relieve the immense pressure and pain of the page and my friend’s actual pain. I cut out “hermedically sealed,” which is how it seems my friend’s pain is stored, and I pasted it onto the next page so that it could be seen as “medically sealed” through the cutout. A lot of my friend’s history involves intense and traumatic encounters with the medical establishment, so I thought this was appropriate. I cut out and folded over some of the page to make more linear elements and to add to the color use on the page as well. I also wanted to do this to incorporate the idea of overlapping aspects of our lives and our histories.
When I cut out “hermedically sealed” it left an opening that for me seemed like a window and represents the hope I still have for my friend despite what seems like endless suffering. I painted the page that can be seen underneath with blues and greens to represent the sky and grass, and I placed a puffy Hello Kitty sticker in the window as a kind of whimsical “hello” with friendship. Part of the other cutout seemed organic and flower-like to me, so I also added a stem of a flower for more aspects of light and living, but also change and death. With some of the folded over cutouts I felt like there was too much color and light, so I blacked out the spaces with a magnum black Sharpie.
Throughout the process, I was concerned not only with symbolic aspects of representation, but also with the aesthetic elements of line, color, space, balance, etc. So, part of the experiment was definitely symbolic, but I also spent time adjusting the image elements to try to make an interesting and unifying picture.
When I felt like I was done with the journal page, I took a photograph of it and posted it to Facebook to keep track of the process aspect of the journaling project. I was then compelled to go further with the image by enlarging parts of the image and cropping them in interesting ways. I took snapshots of the screen with my iPad and then emailed them to my desktop machine where I processed them in Photoshop and then printed them out. I really didn’t know how they would look printed out or if I would use or like them at that point.
I liked how the prints looked, but I felt they really should be juxtaposed somehow, so I combined them.
The closeup crops that I made were deliberate. I based my decisions on aesthetics and also on what words would be incorporated into the image. “A FACE TO YOUR PAIN” was cropped into “TO YOUR PAIN” for one image and “OUR PAIN” for another image. I wanted to bring together these two aspects of the experience of pain, the self and the other, and comment on the interaction between the two. For my friend who suffers, it seems that her pain is hers alone and that it is an isolated state of suffering, but she also has friends, family and care providers who care about her and interact with her pain and suffering. We, of course, have our own pain and suffering, but seeing her in pain is also difficult and informs our own pain and our own worldview.
When I combined the crop prints, I was “mindful” of the tension between the different images on the page and wanted to incorporate Linehan’s ideas about thesis, antithesis and synthesis in the overall picture. For me, the synthesis is the final completed work, but up until then I felt that I was going back and forth trying to find the finished piece. I felt that I needed to bridge the piece to make it more cohesive, so I added a red ribbon that tied the gaps that I saw together, also tying my friend to the world and people outside of herself. I then added sculpted copper wire to put back in a bit of the organic that I thought was lost and to act as a core and a crowning jewel.
For the second image, I employed much the same process. I printed out crops of the journal and then cut and fit the pieces together like a puzzle. For me, the second piece is more about hope, so I used the “A Window Opens” text in part of it and the overall image is less dark and red. The border of the image is a handwritten excerpt from Linehan’s text that talks about dialectics and how it is a process that persuades and encourages movement. I used the red yarn to imply some movement, but also tension. The yarn is tight, but not so tight that it tears the page. It also helps to unify the image I think, adding that aspect of synthesis.
I hate to be so blunt…okay, I really don’t mind, but my mother really wouldn’t approve of such language. heh. Anyway, it really is a major chore realizing you are fucked up in the head. There’s no easy way to put it and no easy way to realize it.
Okay, maybe I could just say “mentally ill,” but that phrase seems so sterile to me compared to what it is really like to realize you are fucked up. I remember when I first became sick, and for years after honestly, I SERIOUSLY thought *I* was not the one who was screwed up, but that everyone around me needed therapy instead. I probably even told my parents that they should go to therapy instead of me.
Still, my life just seems like my boring old life to me. I hardly seem as messed up as I actually have been in real life. Doesn’t everyone try to kill themselves these days?!? I mean really! Don’t most people have eating disorders? No? What? And the psychosis? Well, I know that isn’t *quite* normal, but it isn’t THAT bizarre once it happens to you. Only, it kind of is bizarre. I guess a little more strange than “normal.” I just have to laugh about it all. It seems so ridiculous! All of it. My whole life really seems spectacularly odd is all. I really can’t imagine a life more “normal” than mine. That is why I am always surprised when I talk about one little thing in my life and people look at me funny.
Anyway, back to the realizing you are fucked up in the head. If you are new to the business of realizing it, just take the time and let it sink in, because it takes a LONG LONG time to really let it absorb properly. I think it is because once pretty much ALL of us were in the “normal” spectrum, even the ones like me who eventually jump ship into crazy-land. It seems to me like everyone pretty much likes to be “normal” in some way, even if you are a “normal” tightrope walker or a “normal” person with blue hair who likes to hang from your piercings. There is still a community for your type of normal out there. When we are kids, we are all sort of “normal.” No one really says to their teacher “yah, I want to grow up to be the guy who walks around the streets talking to voices! YAH!!!”
A lot of people say “oh, you shouldn’t use terms like ‘normal’. No one is really ‘normal’ anyway!” But really, there are NORMAL people in the world, even if the term is somewhat corrupt, so I am going to use the word normal and I’m going to quit using quote marks around it by God! haha.
I know that I am somewhat normal in some ways, but in other ways not so much, and that is okay. We grow up thinking that we want to be superstars and the best of something, but no one really wants to be completely off the charts weird. I’m just going to say, you can survive being weird. You don’t have to be a superstar. It is just important to realize that in some ways you, or at least I, am different from normal people. Part of accepting my mental illness means accepting my non-normalness, because if you think you are normal, you most likely won’t take your medication, and for people like me, people with schizophrenia, you need to realize that medication will and does help if you are on the right meds.
I don’t even know why I’m writing this. It is just something I was thinking about as I was looking out the window today. Specifically, I was thinking with a chuckle how I used to think that it was everyone else who needed a psychiatrist and NOT me. And it was just so hard realizing how it was me that was messed up and me that needed help. That’s all.
Loud In the House of Myself: Memoir of a Strange Girl is a new book by Stacy Pershall. Of course, I was immediately drawn to this memoir, because it is a) a memoir b) about a “strange girl” and c) deals with mental illness. Yay! Since I’m undoubtably a strange mentally ill girl, I knew I had to read this. Pershall writes about her life growing up in Arkansas and her morphing from an über-sensitive child into a teenager and young adult with Borderline and Bipolar issues. Anyone familiar with the mental illness memoir genre will certainly have heard of Elizabeth Wurtzel, and I just bring her up, because UNLIKE Wurtzel, Pershall is not whiny in her writing! Pershall is matter-of-fact about her trials and symptoms, even though the reader can imagine the actual playing out of illness to be much more harsh and unbearable.
Pershall describes her unrelenting eating disorder, mood swings and suicide attempts with a steady and precise hand. This book seems really accessible to me, because Pershall speaks not only to those of us who have been through the mental health care system, but also to people who might not really understand this special weirdness. The only thing I would like to see more of in this book is more OF this book! haha. Seriously though, I enjoyed reading this memoir and would love to read more from Pershall. I would especially recommend this book to people struggling with Borderline Personality Disorder. There is a special misery only known by Borderlines that is never really represented in the books that ostensibly deal with Borderline Personality Disorder. I really wish there were more accounts like this that show the uncrazy through the crazy of Borderline Personality Disorder.
() I might owe my fast reading of this book to my Starbucks coffee run, but it could also be attributed to the good and interesting writing in this book. “Buzz: The Science and Lore of Alcohol and Caffeine” by Stephen Braun is a captivating discourse on two of the most beloved substances on the planet. At one moment you are a molecule-sized scuba diver following the path of the ethanol molecule throughout the body and the next you are sizing up the athletic advantages of caffeine. The first half of the book is dedicated mainly to alcohol and its effects on the body and brain. The second half discusses caffeine. While the book may be a bit outdated (published in 1996), it still has relavent information for lay readers interested in how caffeine and alcohol work in the human body. The book really left me wanting to know more of the unanswered questions about how these substances work on a microscopic/molecular level. I felt that the first half covering alcohol was more complete, and ultimately more interesting, than the caffeine part, which is why I give this book 4 stars instead of 5. A good read nonetheless and you will come away probably knowing more than you do now about alcohol and caffeine.