Looking for other tardive patients for a movement disorder project…a free online pamphlet filled with facts.

gainesvilletwoWe went to Gainesville to see my neurologist, the one who finally fixed the tardive dyskinesia, a side effect of antipsychotics.

 

I’m going after a huge undertaking, writing a book of my journey with tardive, the docs I saw (you would not believe some of the stories) the ER visits, the 8 mo disastrous titration off Seroquel that only made my symptoms explode (withdrawal emergent syndrome) and the whole lot of it.

How many people have this anyway? Who would know? I am lining up my sources and looking for input. What questions are answerable? Should I ask for a quote?  I’m just trying to do the right thing and prevent others from living the same three year marathon nightmare that I did. If you know anyone who is twitching, grimacing or thrashing, send ’em my way. bipolarbrainiacSFL@Hotmail.com

 

I

Got Thrown off a Fb group for this

AlLiliPulPink

 

I’m from North Sand Diego County, Rancho Santa Fe to be exact. Anyway as an alternative radio person I wanted to be Allison Steel but there already was one.  Later I found an old facebook group for people from my elementary school and left this link there. They banned me.

Oh well. Now, I’m using my real last name to advocate for tardive dyskinesia, I ‘came out. I click on other wp links, read and comment as often as I can.

http://ibpf.org/blog/coming-out-after-25-years-bipolar-who-am-i-anyway

“Go Further:” Dad was Ford Dealer, I’m bipolar, with “A Better Idea”

http://www.bphope.com/blog/bipolar-mood-cycles-stop-fighting-and-win/

We’ve come a long way, baby. On the right we have the Ford Explorer. For you millenials, pictured top left was the disastrous contraption called The Ford Pinto.

People howled over Pinto jokes for years but it wasn’t funny. The placement of the engine, in the rear, beneath the trunk or flip top back was terrible if you got rear ended. Dad survived the 70’s Oil Embargo and supported his brood of four daughters during a very rough time. Pinto and all.

I admit, I was spoiled. I certainly was certainly unprepared for the shocker of Bipolar Disorder, that’s for sure.

And I have a whole new way of dealing with mood cycles and other downers that come up in life. You could say I’m “Going Further.”

http://www.bphope.com/blog/bipolar-mood-cycles-stop-fighting-and-win/

I hit The Cooking Recipe Jackpot in Diabetic Living

Big smile, shorthairclip

 

The Word ‘Diabetes’ is even worse than ‘Tardive Dyskinesia.” It’s clinical, cold and calculating. It’ll getcha! However, because of my atypical antipsychotic ( twice as sedating and weight gaining than the others in its’ class), I have elevated blood sugar levels and was worried for a while because the docs wouldn’t tell me exactly what they were. So I thought it was worse than it is.

I’ve been studying and changing things in my life. I’m using self as study subject, which is problematic in and of itself.

For a long while I cooked to relieve stress. Then I ran out of enthusiasm for the 1000 or so recipes I’d clipped out of the newspapers over the years and stopped. Actually, I’d rather write than cook but that probably is all of us.

I was reading ‘Diabetic Living’ and learned a ton of stuff. First, there are more diabetes drugs than I can count on four hands. So those magazines are not ever going to be an endangered species. The one I got ahold of have at least six colorful, imaginative but not too complicated recipes and as I worked out, I ripped the pages out and stuck ’em in my Walkman.

I was glad I’d read the magazine. I totally hit the jackpot for simple, sumptuous recipes that day. Now all I have to do is clip them smaller and tape them to index cards and make two copies of each to account for spills, wear and tear, not to mention misplacement.

This is the Day I’ve Been Waiting For

Today I was approved for a grant for expensive, Brand New, Tardive Dyskinesia Medicine. Whew!!! Then, my Video Blogs were posted on my publisher’s site, IBPF, International Bipolar Disorder Foundation.

Here is a link to part one. It’s a two part series on a very common, horrible side effect (Parkinson’s like it makes me understand Why Robin Williams pulled the plug. Involuntary thrashing tremors, etc-wait, I’m spoiling the fun. If you want to take a quick peak on a mental health advocacy Vlog and what it looks like to Vlog in general, here it is.  I’m so brand new at all this, let me know at least if they are live. This syndrome side effect of Atypical Antipsychotic drugs like Abilify, Geodon, Latuda, Saphris, Invega, many of whom market themselves as antidepressants or helpful for bipolar depression, meanwhile the public doesn’t realize that they are on such a heavy duty drug!! I really wanted to get the word out, because it happened to me and it’s really common. People don’t know.

Blog: http://www.ibpf.org/blog/move-over-movement-disorder

Part 1: https://www.youtube.com/watch?v=nCOR_YVo-ks

Part 2: https://www.youtube.com/watch?v=TqfEX8jl-Zs

 Red

Write On: The WordPress Rule

Write On
I just found out from Opinionated Man on Harsh Reality about the WordPress limit on the combined number of tags and categories. If more than fifteen, they go out into the blogsphere version of the garbage can!!! That’s ok cause they needed work anyway!!!

I am back to writing my book. I was lost for a while and then reread “Haldol and Hyacinths,” because I wanted to see and hear the author’s voice. My book is not a memoir, it’s a trilogy of fiction with a manic depressive character who is still in the workplace. I am feeling like I am hitting my stride. Finding my own voice. It’s actually in rewrite.  I have bipolar disorder and have had it for twenty five years. The first med regime in ’89 worked really well for ten years. I was a total career woman as a disc jockey and rising journalist/music director. No time for psychiatrists, Work was my universe!!!

I was actually seeing my GP for my meds. When the meds stopped working, I was lost, thought I was out of luck and for another three years self medicated, got divorced, got blacklisted and then moved here and finally got back on track and returned to work.  I had been LOST for three years.

Earlier last week, I went to Lexington to see my father, who is a little up and down himself.  So I didn’t write for five days. I am spending about four hours a day on my book which is making it so that I don’t blog as often. But I did turn in a part one and part two eating disorder exercise bulimia blog to International bipolar foundation. It turns out that as many as 14-20% of patients with bipolar disorder actually have a co-occurring eating disorder. I’d been working on that piece, #no longer a number# for quite some time. I’m cooking dinner right now, taking a few minutes away from the stove and hoping I don’t get burned. (my food, I mean.)

2 many doctors appts give birth 2 an idea

Ok, on a day when I have doctor’s appointments, I get depressed. And it’s getting even more triggering to me. As a person who has survived pretty well with bipolar disorder for 25 years, weathered bad and good times and irreversible side effects, the illnesses mushroom. Oh, if I knew then what I know now. That’s why I want to write a book.  Hey, I could write the whole thing in doctor’s offices waiting rooms!!!

To balance the morbidity I get a good workout in in between, before or afterward.

Here’s what got me thru

“Rage Against the Machine” The ever soulful “The Ghost of Tom Joad”

Gary Jules “Mad World” also done by Tears for fears

Ice Cube “It was a good day.”

Led Zepplin “Boogie With Stu.”

a lot of people don’t get rap. They drive home their oppression. I would think anyone with a mental illness would understand the idea of being underneath a power pushing them down. Here’s my fav lyric

“Today I didn’t need to use my AK, I’d say today was a Good Day.”

ha. Power lifting and treadmill reading The NYT Sunday Edition. The upper balances the downers.

Or try this: DC Hardcore Band Fugazi’s classic rage fueled “Waiting Room.”

Meet psych med metabolic slowdown Head On! (and holistically)

Did anyone notice that Oprah Winfrey bought a stake in Weight Watchers and maybe is going to be a spokesperson? Her stake ensures her position on the board of directors. I did weight watchers a few times. I’ll go over that later. I also did OA, and another couple of diets professed to be anti inflammatory for both my psoriasis and low back pain. Not sure if works.

Ever since I started with antipsychotics, I had major binge/weight overexercise issues. Not all antipsychotics have as intense a weight gain side effect though, just as all antipsychotics are not as proportionately causal when it comes to tardive dyskinesia. A good way to research a med if you are worried about one side effect or another is to Google it and count out how many class action lawsuits there are for certain antipsychotics and compare the numbers. After I got Tardive, I went online in search of treatment and there was a hugely disproportionate number of class action suits against the drug I’d been on in high doses for a year. I’m convinced that that drug did the neurological damage that is permanent. The drug I was on was Geodon and it wasn’t even really effective controlling my mania. But I’m getting off topic. Sort of. These pencil thin women running an eating disorder clinic insisted that I change from Seroquel, which I was tolerating quite well for seven years, to another antipsychotic because they measured the success of their program in weight loss. At that time (2004) I was thinner than I am now. But this picture shows me at my heaviest ever.

This is a photo of me after six months of being on Clozaril, an early atypical antipsychotic that when studied, is three times more likely to result in weight gain and type two diabetes. I have to take it because it stabilizes moods and helps tardive dyskinesia along with Xenazine. When the hunger hit hard I just gave up and gave in. I gained 60 pounds in six months.

Then I got on Vyvanse and alternated with Ritalin low dose to take the edge of appetite. I was always so hungry!!!!! I worked out the way I’m doing now, weights and cardio and swimming and over a year I lost the 60.

Then I stopped the medication too abruptly and had a three month depressive phase and ‘fed my head.’ Food, especially breads, was the only pleasure I could feel. I get that kind of depression where I lose interest in things that used to fire me up. This was from last April to mid July. I regained 20 pounds in those months. OOOPS!

Now, suddenly, my blood sugar is high. I’m on the verge of type two diabetes. I was put on Metformin prophylactically (to slow down the progression)  but it has side effects I can’t take.

From what I understand both the disease of diabetes and the meds cause constipation. So I’m going to have to find another way to cure myself. I’m doing research. Both Western Med, Eastern Med and Western Holistic sources.  I finally understand the science that explains why, after eating, I’m more hungry than before, and I’ll explain it soon, when I complete my research. Stay tuned. We tend to gain on these meds, but I think with certain steps, we can dodge both bullets, the diabetes and the weight gain. But it does involve a lifestyle change. And I will never promise that it will be easy. Just like we deal with our mood disorders, you have to really want it and be committed to it. I want to live another thirty years and write my books and advocate for mental health care reform. I used to not have a purpose. Now I do.

AND HOW DOES ANY OF THIS RELATE TO ALTERNATIVE MUSIC?  I used to be an alternative music dj and music director and when I work out, I listen to all sorts of music, stuff with tempo, stuff with soul. I like Ted Nugent and Alice Cooper as much as Fiona Apple and Tori Amos. I especially likes She Wants Revenge “I want to tear you apart” and am putting that on my next set of workout tunes. I study and read the paper when on the lifecycle and stairmaster. I personally think exercise eats up a lot of time but if I can study my notes from classes I take and get up on what’s happening in the world, I feel good about myself.