Indie Pharmacies an Endangered Species…The only kind who understands and cares

horse

I am on a tear to save independent pharmacies being driven out of business. If you read my stuff, you know I have bipolar/tardive/borderline diabetic side effects. When I got tardive my publix of fifteen years bumped me off. My complications were too much for them. I found an indie which is why I wrote this story.

http://www.bphope.com/blog/bipolar-strong-my-pharmacist-has-my-back/

 

#OnePatientOneGoodPharmacist

 

Indie Pharmacies an Endangered Species…The only kind who understands and cares

pills

I am on a tear to save independent pharmacies being driven out of business. If you read my stuff, you know I have bipolar/tardive/borderline diabetic side effects. When I got tardive my publix of fifteen years bumped me off. My complications were too much for them. I found an indie which is why I wrote this story. Indies are being driven out of business. Conflict of interest/collusion between pharmacy benefit managers and the drugstores they own and government laws that benefit….well you get the picture.

One click is all I need to support this movement.

http://www.bphope.com/blog/bipolar-strong-my-pharmacist-has-my-back/

 

#OnePatientOneGoodPharmacist

 

Indie Pharmacies an Endangered Species…The only kind who understands and cares

horse

I am on a tear to save independent pharmacies being driven out of business. If you read my stuff, you know I have bipolar/tardive/borderline diabetic side effects. When I got tardive my publix of fifteen years bumped me off. My complications were too much for them. I found an indie which is why I wrote this story.

http://www.bphope.com/blog/bipolar-strong-my-pharmacist-has-my-back/

 

#OnePatientOneGoodPharmacist

 

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

 

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Picture from Gainesville with fill light from the Lake behind me! Looking for other tardive patients

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

 

I got it from Geodon. I’m trying to find out if there are any other people in my situation. If you know any, can you send them my way? I’m working on a project where I tell people what their chances are, tips on prevention, treatment and current medical thought. Having had it since 2007 and searching for symptom relief (I couldn’t drive or sign a check or fall asleep for three year…a total nightmare) It’s a lot like people who get bipolar disorder and have a three year period during which they tried everything. This is a good photo because there was a lake across the way, right below me and the light came from below, filling in my roadmap of a face!!!  In Hollywood I think that’s called a “Kleig Light” or something like that. We shot pictures forever. It was so fun.

Muhammad Ali, “The Greatest,” Movement Disorder and All

aliinactionali

I was wowed to see the special, separate “Ali” section in the New York Times. There are so many parallels between him and I. The most obvious being I have Parkinsonianism from Tardive Dyskinesia.

NOT TO BE ALARMIST BUT…if you take psych meds you should be aware that…

Tardive Dyskinesia is a “movement disorder” a side effect of some GI drugs and antipsychotics. Even atypicals.

It would seem the older ones, the Haldols, Thorazines and such, were more causal, percentage wise, being that millions more antipsychotics are prescribed now with the advent of euphemized “Atypicals,” or “Second Generations” but still the risk is there. I think it’s much less although I do see new cases on the internet and even though there are fewer of them, the amount of misery is unmeasurable. Human suffering isn’t digital or binary. Sorry, Charlie.

Ali had Parkinson’s Disease, very similar to Tardive.

When I developed this problem, one of my parents declared it ‘my fault.’ (It’s also my fault I have bipolar disorder and according to him my bipolar depressions are a matter of choice too). Mein Kamph. This is just to let you know what I deal with privately. Out in the world it’s way worse. Places, mental health organizations I used to volunteer for with high security clearance, bringing support groups into the psych ward, dealing with people who had thought disorders like schizoaffective…now that I’ve recovered? They only remember the trembling, anger and tears. NAMI, Rebel’s Drop in…they solicit help with things like newsletters or leading meetings, both of which I’m good at, but after applying, I never hear back. I’ve made the  mistake of verbalizing that I’m evidence of a sad statistic they’d rather not think about.

Newsflash: I’m not going to vanish simply because my side effect shakes you up!!!

No one was ashamed of him shuffling along, shaking hands with world leaders, pushing for peace and understanding. The funeral with representatives from a wide palette of faiths is further proof that all along, with every move he made, he made the world and better place.

I’m trying to do the same. I’m trying to raise awareness of my side effect, not in an alarmist way but to educate and share coping skills as well as ideas on delaying, deferring, preventing Tardive Dyskinesia. This does NOT mean you can’t take your mood stabilizing meds. You should. You might work with your doctor closely to see if you can find the ‘lowest therapeutic dose’ because the likelihood of getting the syndrome is directly tied to dose and how many years of exposure. After a decade the odds go up. Food for thought.

I’m not a big pharma hater, either. Their innovations have both helped and hurt me. But they’ve never hurt me on purpose and they are the only ones truly invested in our health, in my view.  Because of how gruesome and disfiguring the symptoms can be (and I dealt with that for three years before finding treatment), for obvious reasons, this side effect is shrouded in secrecy; the afflicted shunned and cloistered away, not for their protection but the ease and comfort (and profitability?) of others. Just asking.

That’s it for me.

“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/

Muhammad Ali, “The Greatest,” Movement Disorder and All

aliinactionali

I was wowed to see the special, separate “Ali” section in the New York Times. There are so many parallels between him and I. The most obvious being I have Parkinsonianism from Tardive Dyskinesia.

NOT TO BE ALARMIST BUT…if you take psych meds you should be aware that…

Tardive Dyskinesia is a “movement disorder” a side effect of some GI drugs and antipsychotics. Even atypicals.

It would seem the older ones, the Haldols, Thorazines and such, were more causal, percentage wise, being that millions more antipsychotics are prescribed now with the advent of euphemized “Atypicals,” or “Second Generations” but still the risk is there. I think it’s much less although I do see new cases on the internet and even though there are fewer of them, the amount of misery is unmeasurable. Human suffering isn’t digital or binary. Sorry, Charlie.

Ali had Parkinson’s Disease, very similar to Tardive.

When I developed this problem, one of my parents declared it ‘my fault.’ (It’s also my fault I have bipolar disorder and according to him my bipolar depressions are a matter of choice too). Mein Kamph. This is just to let you know what I deal with privately. Out in the world it’s way worse. Places, mental health organizations I used to volunteer for with high security clearance, bringing support groups into the psych ward, dealing with people who had thought disorders like schizoaffective…now that I’ve recovered? They only remember the trembling, anger and tears. NAMI, Rebel’s Drop in…they solicit help with things like newsletters or leading meetings, both of which I’m good at, but after applying, I never hear back. I’ve made the  mistake of verbalizing that I’m evidence of a sad statistic they’d rather not think about.

Newsflash: I’m not going to vanish simply because my side effect shakes you up!!!

No one was ashamed of him shuffling along, shaking hands with world leaders, pushing for peace and understanding. The funeral with representatives from a wide palette of faiths is further proof that all along, with every move he made, he made the world and better place.

I’m trying to do the same. I’m trying to raise awareness of my side effect, not in an alarmist way but to educate and share coping skills as well as ideas on delaying, deferring, preventing Tardive Dyskinesia. This does NOT mean you can’t take your mood stabilizing meds. You should. You might work with your doctor closely to see if you can find the ‘lowest therapeutic dose’ because the likelihood of getting the syndrome is directly tied to dose and how many years of exposure. After a decade the odds go up. Food for thought.

I’m not a big pharma hater, either. Their innovations have both helped and hurt me. But they’ve never hurt me on purpose and they are the only ones truly invested in our health, in my view.  Because of how gruesome and disfiguring the symptoms can be (and I dealt with that for three years before finding treatment), for obvious reasons, this side effect is shrouded in secrecy; the afflicted shunned and cloistered away, not for their protection but the ease and comfort (and profitability?) of others. Just asking.

That’s it for me.

90’s Film “Swimming With Sharks” w/Kevin Spacey

spaceyswimsharkskevinsharks

It’s “Shark Week.” And I’m back out in the water, crawling my 1 1/2 miles with a back brace on to prevent me from aggravating my spine twisting my torso too far when I turn right and left for a breath of air.

Little by little, we lose things we love and adjust, accept and move on. I’m the worst, constantly trying to ‘have iot all,’ as my health deteriorates. lololol! I need to go back to AA and practice “Acceptance” and  “Life on Life’s Terms.” Did those faces trigger or seem punitively grim to anyone else? Or am I the only one?

 

Anyway, movies like these, (and I’ll bet you never heard of “Swimming With Sharks),” helps me with chronic pain. Maybe cuz it’s my favorite topic: Hollywood Studios and the machinations taking place behind the walls.

It was an indie film and did not get wide distribution. I lived in LA when it came out and also when the film “Affliction” was released, featuring Nick Nolte, Willem Dafoe, Sissy Spacek and the late James Coburn.  Family alcoholism and mental illness passed on and one in a small town in Maine. The bitterly cold climate was a perfect counterpoint to the simmering rage between brothers over ‘who fucked up the worst’ similar to Bloodline. These are Indie films with A-listers.

What does that tell you about Hollywood, Money And Power?

 

I taking on the ‘powers that be’ trying to address a side effect of antipsychotics that’s mostly covered up.

It’s a movement disorder. I have it.  If I say what, I’m afraid you’ll split. But it’s important. It may be rarer than we thought but it’s real. People at risk or showing early signs need to know.

Deal? Help me? Click and/or comment on this little story if you think we can help each other…. and I’ll find out who you are and we can talk about whatever. On WP, we do that, or at least that’s my experience.

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

Move Over, Movement Disorder: Tardive Dyskinesia and its impact on chronic back pain.

aquanotext

 

 

I know many are upset about the CNN report with Anderson Cooper on “The Opiate Epidemic.” I could go on and on about that one and my 16 years of a high quality of life due to these ‘dangerous’ drugs. Tardive Dyskinesia takes an injured low back and adds in jerky twists, turns and torks of my torso. Oh, my gosh. Even on pain meds I can feel the instant delivery of shots of pain from the twitching and spasm. Oh well. Seven years of STIMA and Chronic pain. So the topic of chronic pain magnified by tardive dyskinesia has come up because I finally had to quit using my ms contin after 16 safe, responsible, uncomplicated use. I even drove my dose down to a 1/3 of what is was before when I finally stopped due to side effects. 16 years. And I’m a person with a former history of substance abuse, exercise addictio9n, left handed, and bipolar. The very person they think is most at risk of going to the streets, to heroin or abusing their prescription. Puleeze!!!

Enough on that topic. It is what it is and that’s why I’ve stopped “Fighting” it.

ALTERNATIVE MUSIC THERAPY

I’ve been listening to 90’s hardcore Grungers “Mudhoney” and their epic “Don’t Touch Me, I’m Sick!” In my 7 years with Tardive Dyskinesia, regarding stigma, they lay it on thick. Real thick. Some doctors won’t even take you on.  They see you as a walking lawsuit. Not in a million years.  I’m in enough physical and mental pain and don’t want others to suffer just because I do. I wish Deb Houry from the CDC who says opiates don’t benefit long term, noncancerous pain!!!!!!!!!

 

But on Tardive I have really good news!!!!

A few years ago, I wrote about this. It’s food for thought if you are on an antipsychotic, new or old. However,  MUCH LESS CAUSE FOR WORRY side effect wise. Newer drugs are much cleaner of this neurological and even metabolic fallout.

Tardive Website links and Utube:

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

Tardive Vlogs Utube

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

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