Actually doing the work (writing)

anglemegyn

I’m working on a book that’s before its’ time. Tardive Dyskinesia, (soon to be ACRONYZED as TD) It’s centrist and slightly comic as the subject matter is really heavy stuff.

I want it to be an ebook that can be updated when new resources (charities) or new meds or clinical trials become available.

My first 6 chapters are done but there’s a lot of repetition because of memory issues. The truth is I want to get this over with so I can write my ‘main’ story. Or maybe this should be folded into my main story? I just don’t know what I’ve got until I do the work.

Can you just put something like this on your blog? So people can find it when they need to?

Apple’s ITunes Stole 3009 of my songs and I can’t get ’em back!

applworm2

 

Case #100049365971

Ongoing for 8 mos.

Number of times called customer service: 9

Times I had computer nerds come to the house to help (and payed them): 5

Time spent on hold or talking to inept people who can’t fix it: 40

Tears shed over not being able to purchase new music either: 9

Anger over big, faceless corporations taking over matters close to the heart such as health care and music, for starters…big time.

This is theft of 3000 dollars.

Who else sells music?

What recourse do I have, call the FTC?

Mentally Ill Dying in Prison Transport Vans

When I was driving home from my tardive dyskinesia neurologist appointment in Gainesville I read an article that made me shudder. It could be me. Prisoners being driving from one facility to another are at the mercy of untrained people who drive the vans and have more of a trucker mentality. It’s about how many people you can get quickly from one place to another. So they jam the vans, deprive the prisoners of bathroom breaks, etc. When a mentally ill person doesn’t get their meds for three or four days they can decompensate and start babbling loudly or drooling, one person died of Xanax withdrawal.

 

I thought…’It could have been me.’ I’ve been privileged to have good care and avoid the hospital for seventeen years but when my former bff called the cops on me and told them I was suicidal, I was in a holding area very similar to a county jail. A long time ago, the eighties, I had legal problems re my drug habit and went to jail five times, so I know what I’m talking about.

 

The problem is the privatization of public prison and jail systems. These people know how to penny pinch but it’s at the expense of those they transport and their human rights.

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.

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.

Medicare Oversight Won’t investigate long term racial, bipolar stigma & abuse by Quest Labs

 

ali

Allison Strong

I’m Caucasian and the victim of long term reverse diversity. #whiteasianlatinoeurorussiandidImissanyone’s lives matter too!

 

Who is accountable here????  Intentional errors, no accountability, refused a phone number for a supervisor, critical care denied by stall tactic, Tick Tock. If I don’t get my labs done by the end of the day I’m cut off my life saving medicine. (because of it’s potential side effects)

i have a huge grievance over seven years of abuse and was directed to an agency to improve quality of service. i wrote out a seven page letter including doctors who would confirm the egregious conduct of a particular Quest Diagnostics lab service location and the systemic problem i found among representatives, being denied a number for a supervisor, finding out at the last minute, when I needed service most, not being able to make a payment plan to secure or guarantee my service, if i didn’t get it i wouldn’t get lifesaving medicine. The agency that improves quality of health told me they don’t investigate grievances of laboratories who draw blood for diagnostics. I need help. This abuse can’t go on. I’m on hold with medicare now. They were the ones who sent me to the agency who says they don’t deal with labs. Round and Round I go.

New Youtube Channel and uploaded Tardive Dyskinesia Video

 

I have a learning issue. It’s meds, racing thoughts,al in german dress and new earrings adhd and middle age so I have a social media person come over once a week. Some things happened at my magazine, like changing the name of my article and not telling me, which made me feel really sad. I’m just sad today. Anyway, to cheer me up and take back control of my activism and journalism, We created a YouTube Channel and uploaded my tardive dyskinesia videos on there. If you know anyone who has that problem, I learned a lot during my three year

https://www.youtube.com/channel/UCFrrhgSBHa6_4FIw1ydlG7Qarch for treatment.

Days b4 my next refill of Tardive Meds, Silverscript is denying coverage

As many of you know, I have a neurological side effect from the antipsychotics that I’ve been taking all these sixteen years. It’s like severe Parkinson’s.

I take meds for it. Expensive meds.

Silverscript, my medicare part D, has suddenly cut me off, just days before my next refill. Previously, back in January they said I was covered until next Feb in 2017. Legally, you guys, can they do this?

 

The Nami statistics are thus: For those of us who take an antipsychotic, whether it’s a traditional old school Haldol or Thorazine or an ‘atypical’ like Invega, Geodon or Abilify,  for a decade, they say that percentage of us who will get tardive dyskinesia is 30-60%. And that type of drug is not taken temporarily. Its a drug they give you and tell you you’ll be needing it for the rest of your life. So we’ll all be taking these meds for a decade unless we try to go without them, find out that we can, and get off of them. For me, it’s too late.

It’s also referred to as Parkinsonianism. There is no cure, only expensive symptom management.

I’m on a critical medication for this.  My Part D, Silverscript, who is owned by the wonderful folks at CVS  (wouldn’t that be a monopoly a pharmacy chain owning part D Medicare benefits?) who had approved me thru Feb of next year. Sent me a notice, …..ten days before my next refill that they are cutting me off. I have no time to react.

We have a piece of paper saying that I’m covered through Feb of next year, so how can they cut me off at the last minute? Ideas anyone?  Has anyone done an individual appeal process? The doctor says on their end, they are out of options, have appealed this decision twice. Now I hear about it.

Will they still give me my meds while we are appealing this? Is this even legal?