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.
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!
Hi! As you might know if you have scanned my blog, I make it a point to talk about mental health/illness, because I have schizophrenia and I believe in stomping out the stigma of mental illness. Well, I have this cute story to share! I was waiting outside of the classroom for my biology lab class to start this fall and started talking to a supernice girl who was in my class. We got to talking and to try to explain why I had been in school so long I decided to tell her that I have schizophrenia. Lo and behold she says “oh yah, my mom has bipolar and my brother has schizophrenia too!” What a small world!!! It turns out her whole family is active in the mental health field in advocating for the erasure of stigma related to mental illness and they have a website called http://bringchange2mind.org/ . I am always surprised when I talk to people about my own illness and then they also know someone or are someone with mental illness too! It is such a big thing in peoples’ lives and when we talk about it, it is surprising/amazing/wonderful that we aren’t alone in our struggles. So, I just wanted to share this little story and a link to the Bring Change 2 Mind website. It was a wonderful feeling to meet someone else at school who knows first hand about mental illness and to be able to talk openly about it! :) Three cheers for no more stigma!!! :)
Hey check out Lindsey’s vlog! Great to hear her story! :) She is also an amazing artist! Check out her art at http://www.etsy.com/shop/lindseycormier
Hi! I’m happy to report I got my Cure Alliance schizophrenia magnet today! Strange that my bumper wouldn’t hold the magnet! haha. Anyway, please check them out at the Cure Alliance Facebook page here. Also, see the related post I made about their campaign here.
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’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! :)
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.
So, schizophrenia sounds like a really friggin’ scary deal, and, it kind of is, but the odds are that you probably will not develop it. Interestingly enough, schizophrenia effects about 1 percent of the population worldwide according to most statistics. There also seems to be little variation to the 1 percent figure. In other words, developing and developed countries seem to have the same rates of illness. It seems that there is not one place that has more or less of the disease.
Here are some other figures provided by narsad.org, Continue Reading Notes on Schizophrenia: Probability/Social Aspects…
I just finished reading “Manic: A Memoir” a few days ago, so I thought I’d share my opinion with you. The book is the memoir of this high-powered female attorney from Los Angeles who has bipolar disorder. I’m usually really interested in most Continue Reading “Manic” A New Memoir of Bipolar Disorder…
Tags: birthdays, Mental Illness, Schizophrenia
Well, my birthday is coming up. On April 24th I’ll be 35 years old! Ouch! So old! haha. I can hardly believe that it will be 20 years since I’ve been 15 years old! 20 years since I first went crazy. 20 years of getting to know schizophrenia. How did I get to be Continue Reading Getting Older…
Oh, so I haven’t blogged about this yet, but I went up to Seattle with my family about a week ago and participated in the National Institute of Mental Health-funded research project regarding schizophrenia. I had a really great time and the research team was totally fabulous and wonderful!
So, we arrived on a Wednesday afternoon. They took blood samples from Continue Reading NIMH Schizophrenia Research Participation…
Okay, I rarely write about celebrity gossip, but overnight Britney Spears was taken into the hospital for psychiatric evaluation and I guess I feel the need to comment. From what I’ve heard on the news, she hasn’t slept since Saturday and she’s now on a 72-hour hold. I have also been Continue Reading I Feel For Ya, Britney!…
What is ironic is that I’m here in a hotel room in Seattle up late at night watching the movie “Awakenings” just as I finish my own participation in research related to my own mental illness Continue Reading Ironic…
I just finished reading Elyn R. Saks’ book, The Center Cannot Hold, and I highly recommend it to everyone, especially people who are touched by someone who has mental illness. The book is a memoir of Ms. Saks’ life and coming to terms with schizophrenia. From an early age she recalls having strange thoughts, but Continue Reading A Book Everyone Should Read!…
You might be asked to participate in an eye tracking exercise like the one shown above. All of the equipment is just used to keep your head still and to track your eyes.
I just wanted to let you all know about this schizophrenia research study I am most likely going to be participating in and I hope that if any of you out there are interested, you will join in on the study! Well, as you might know, I got a new job at schizophrenia.com. Well, one day I was visiting the site and an ad popped up looking for research participants for this schizophrenia research study! Here is the link: http://www.schizophreniaresearch.net/Involved.asp
Unfortunately, at this time it isn’t an Continue Reading Schizophrenia Research I’m Participating In…
Are people with schizophrenia infact more logical than “normal” people? That is what one research study seems to indicate. Not a lot Continue Reading People With Schizophrenia More Logical?…
Whew! It has been awhile since I have written a tip/trick. The last few months have been crazy, but not really in a good way. Oh well. The tip I’m writing about today has to do with this special time of year for people. This may be rather specific to people who are in the US and/or to people who celebrate certain holidays. Anyway, in the US most people have some holiday that they celebrate or they go on vacation or just have some time off. The major holidays are Thanksgiving, Chanukah, Kwanza, Christmas, New Year’s Eve and New Year’s Day. Again, I know there are more holidays that I’m sure I’m missing, but these are the big ones. So, here is my tip: Continue Reading Tips And Tricks For Surviving A Mental Illness #11…
<Sleeping graphic from HowStuffWorks.com>
I don’t know why I didn’t think of this tip before. Probably because I haven’t mastered this and should really follow my own advice about it. Plus my dad likes to harp on me about my problem with this a lot…which just irritates me. On with tip 10. Continue Reading Tips And Tricks For Surviving A Mental Illness #10…
The following videos are by Rob aka deidzoeb, a person from YouTube. His wife, Melinda, aka melsbasketcase, is also a YouTuber and Melinda has schizophrenia. She does well when she is properly medicated, but a lot of people go on her channel and try to convince her that her drugs are poison and that she should stop taking them. I hope you will watch all three of Rob’s great videos about Psychiatry Denial. He does a great job of showing how psychiatry deniers are simply wrong and how they try to take choice away from people with serious mental illnesses. I have included all three videos here. Please click to find them. Continue Reading Common Fallacies of Psychiatry Deniers…
Well, I think I have covered most of the basics regarding mental illness, or at least the ideas I had right off the top of my head. But, I haven’t covered this next topic yet, so here we go with number nine: Continue Reading Tips And Tricks For Surviving A Mental Illness #9…
Ah, it has been awhile since my last tip. This tip may not work for everyone, but it is a personal favorite of mine. On with the tip. Continue Reading Tips And Tricks For Surviving A Mental Illness #8…