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: http://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!
I first wrote about taking my Haldol injections back in 2007 in http://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 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.
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…
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…
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…
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…
Oh, just so you know, these tips aren’t in any particular order, except I did mean to put the first one first. Other than that they are sort of random. On with tip number three: Continue Reading Tips And Tricks For Surviving A Mental Illness #3…
Okay, I know these tips and tricks might not be the most popular tips and tricks with everyone, but they are MY tips and tricks and how I have survived having a mental illness so far. Things could change at any minute. On with number two. Continue Reading Tips and Tricks For Surviving A Mental Illness #2…
Well, I think I know a thing or two about having a mental illness, since I’ve been dealing with this damn stuff since I was 15-years-old. So, why not share a few tips and tricks I’ve learned along the way? I guess I’ll just put up these when I have time. Here is the number one thing I’ve learned: Continue Reading Tips And Tricks For Surviving A Mental Illness #1…
I wanted to talk a little bit about the Haldol injections that I get. I have schizophrenia and part of the medications that I receive are Haldol injections. The long name is Haldol Decanoate or Haldol DEC for short. Continue Reading The Haldol Injections…