Hey CDC, “I’m not who you think I am!”

This says it like it is.

EDS Info (Ehlers-Danlos Syndrome)

Hey CDC, “I’m not who you think I am!” – by Angelika

I’m offended by the CDC opioid prescribing guidelines, with their assumption that I’m stupid and lazy (if my pain is even real in the first place) and that my doctor is ignorant and negligent.

I’m insulted by the derogatory appraisal of patient behavior and appalled that the CDC has broadcast such a devastatingly negative stereotype of pain patients

Coming from the government’s “Center for Disease Control”, these guidelines stigmatize patients with the authority of the US government behind them.

Read the entire article at the National Pain Report.

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Take slavery in Iraq to the International Criminal Court – Walk Free

https://www.walkfree.org/iraq-slavery-icc/?utm_source=Listrak&utm_medium=Email&utm_term=https%3a%2f%2fwww.walkfree.org%2firaq-slavery-icc%2f&utm_campaign=iraq-slavery-icc&utm_content=Iraq-Isis_Petition_Chaser_EN_ATs_Ex_25Aug16

Antiepileptic Drug Suspected of Causing Psychosis

http://m.brain.oxfordjournals.org/content/early/2016/08/07/brain.aww196

There has been much discussion in the bipolar blogging community regarding the pros and cons of different medications in our treatment regimens.  We wonder whether our symptoms are caused by our brains…or maybe, and this terrifies me…from the drugs we take to pacify our unruly grey matter.

The debate has largely focused on the role of antipsychotics.  Many people find their bipolar symptoms are not controlled by certain drugs: but when they try to discontinue, their symptoms rebound, or they even develop symptoms they didn’t have before, like auditory or other sensory hallucinations, tremors, and so on.

I had been skeptical of the extreme descriptions I’ve been reading, of people literally crippled by psychotic symptoms after even a very slow wean from certain drugs.  After all, how could antipsychotics CAUSE psychosis…could it be, thought I, that these people were simply experiencing a resurgence of their own “native” psychosis upon withdrawal of the “anti”?

This study, which focuses on psychosis caused by, or by withdrawing from, certain antiepileptic drugs, has literally changed my mind.  I’m now thinking about the way the brain is able to change the way it functions in its environment.  We bathe it in a substance; it learns to use and depend upon that substance for everyday function.

Sometimes, in the presence of a substance that is supposed to do one thing, our brain rebels and does something else.

This might explain why a person with temporal lobe epilepsy, as represented in the article, given a certain antiepileptic drug, might go ahead and have sensory hallucinations. 

I’m not going to stop taking my lamotrigine (an antiepileptic), because it really does help me feel better.  But this article did give me pause, since I also have temporal lobe epilepsy that causes sensory hallucinations.

Jeekers crow, I sure don’t want to have my days and nights haunted by the smell of baked goods burning in the oven, which is my main sensory hallucination.  It’s damned hard to sleep when your brain is tugging at you yelling “Get up, asshole, and take those cinnamon buns out of the oven before they’re ruined and the house burns down!”  Never mind that I don’t eat baked goods and don’t even have a house, much less an oven.  Stupid brain just goes on and on. 

Combine that with the constant intrusive music that isn’t there, and the bouts of disabling paranoia…I’ll take my chances with my  L&L cocktail (lithium and lamotrigine).

Just not that other stuff, which you will find in the linked article.  I encourage you to read it for yourself, and please do comment here!  I have some private thoughts, which I’m sure will spill over into the comments somewhere.  But I want to hear what all y’all are thinking about these critical issues of what we are putting into our nervous systems.

Low-dose vaporized cannabis significantly improves neuropathic pain. – PubMed – NCBI

http://www.ncbi.nlm.nih.gov/pubmed/23237736

Read and think.

Angels Walk Among Us

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Geneva State Park, Lake Erie, Ohio:

I pulled in yesterday, having nothing to do until Friday’s MRI-fest at The Cleve, a.k.a. The Cleveland Clinic.  Explanation later.

Even a two hour drive tires me out these days, so I was grateful to have exactly a two hour drive here from the not entirely horrid private campground where I laid over for the Sabbath.  I had begun to miss keeping the Sabbath, so I started keeping it again, in a simple way.

The check-in lady at the park desk seemed a bit gruff, and I grumbled to myself as I limped out to my camper.  After my grumble, I reminded myself that you never know, maybe she was in pain or her partner beats her up in some way, or her child is cruel or in jail or rehab or on the street or dead, you know what I mean.  So I let that all be and found my campsite, which is a nice large quiet one shaded by a huge red oak.

A little blue car pulled up half an hour ago, and this same lady got out with a vase of white hydrangea flowers.  She told me that something about me touched her, so she had to bring me flowers.  I fought back tears and gave her a hug.  That is the sweetest thing that has happened to me in years.  Years!

Angels live among us, yet we don’t often get to know who they are.

MEMRI: Palestinian Cleric Issam Amira at Al-Aqsa Mosque: Islamic Strategy Dictates Hostility towards Infidels, Tolerance Is Un-Islamic

In a Ramadhan address delivered at the Al-Aqsa Mosque, Palestinian cleric Sheikh Issam Amira said that

Source: MEMRI: Palestinian Cleric Issam Amira at Al-Aqsa Mosque: Islamic Strategy Dictates Hostility towards Infidels, Tolerance Is Un-Islamic

Good morning, everyone!  Wake up!

It’s the 95th anniversary of Gene Roddenberry’s birth.  The iconic visionary creator of Star Trek managed to assemble a cast of mixed gender, interracial, mixed species, interplanetary characters (and, if you think about it, Spock was asexual, so that lends a further level of diversity), in the early 1960’s before the Civil Rights Movement, and waaaay before Women’s Liberation got under weigh.

Now we are faced with this.

A prominent cleric gives his Ramadan speech at the iconic Aqsa Mosque, in which he condemns the idea of peaceful coexistence and forcefully argues in favor of the word “infidel” and just as forcefully encourages letting the “young men” who want to go out and fight in the name of Allah to go and do their thing.

Meanwhile my brain is singing Pete Seeger’s iconic song, “Then We’ll Have Peace.”  Listen to it.

 

A Deprived, Camera-shy Girl

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A snazzy photographer who I met last week smugly smirked at me when I told her my dog is camera-shy.  She tried all sorts of kiddie-photography ploys, to no avail. 

All she got were blurry action shots like this one:  Hi-ho Silver, awaaaay!

I wanted to catch her sleep, one red Kong in her mouth, two more within easy reach, a couple of rope toys for comfort….all while within nudging distance of me, while I was washing and tidying in preparation for today’s push on to the Land of Cleve.

She has radar for cameras.  She reminds me of the crusty Nova Scotian fisherman who said to some tourist who was aiming his expensive camera at this guy who was preparing to cast off his dingy:

“You snap that jeezely thing at me, and I’ll shove it down your jeezely throat!”

‘Hope Street’: The Mental Illness Greetings Cards Offering Support To Those Who Need It Most

http://m.huffpost.com/uk/entry/uk_57837ff9e4b0935d4b4b2a60?utm_hp_ref=uk-mental-health

I think this is a terrible idea.  Cutsie cards for someone who has just survived a suicide attempt?  Gaaaah!   Makes me want to…to…I don’t know what.

Everybody’s different.  Some people might welcome the “I don’t know what to say because I’ve never been there, so I’ll make this well-intentioned gesture” type of thing.

Seriously, maybe it’s just my general recluse Boo Radley personality, that I don’t love the idea of “mental health cards.”

By the way, do you know how the switch from saying someone has a mental illness to saying they have “mental health” came about?

Me neither.  It galls me worse than seeing glaring typos show up in publications that were supposedly edited and proofread.  (Oops, now watch me make a copy blooper😜)  Mental illness is not mental health: it’s the opposite.

Who the hell would send someone who had just survived a car crash, spent a month in ICU, and lost half their brain function, a card that read, “If I covered a dozen pink fairies in milk chocolate and fed them to you one by one in a bower of bright red roses while listening to soothing hip-hop music, would that help?”  (Bet you didn’t know I once tried to make a living writing crappy ad copy for crappy gift catalogs at 50¢ a line….)

I don’t know.  Maybe I’m just an old fuddy-duddy, but I would much prefer the buckets and buckets of delicious chicken soup prepared for me by my neighbors in Jerusalem whenever I got sick with anything at all.  Once, I came home from the hospital after a bout of intestinal badness to find that my rabbi’s wife, who had a million children, no time, and no money, had made me a huge thing of homemade almond milk.  I cried and cried, because I had lost 30 pounds from shitting out everything that I tried to put in, and her heavenly nectar actually absorbed!  I could feel the love and life flowing into my blood as I sipped it.

So yes to the chicken soup, and hold the cutsie cards, please.  But that’s me.  Call me Grumpy.

How about you?  Check out the article and let me know your thoughts!

Hallelu

Finally!

I got an appointment at the Cleveland Clinic MS unit!  Now I just have to get there, driving very slowly, with many stopovers, from my current location at the southernmost tip of Virginia.

The appointment coordinator actually offered me an appointment for Monday, but, uh…

Even one year ago I might have jumped into the saddle and been there tomorrow!  But now it will have to be in short hops with many rest area stops to limp around and stretch my poor hands, which have been cramping up like nobody’s business and just giving me general hell.

Last night I read about neurodegenerative diseases, cried a lot, did a bunch of research and decided that I’d better at least get a more definitive diagnosis than the one offered by my neurosurgeon, e.g., “This weakness is not from your spine.  You have some kind of neuromuscular disease.  MS, probably.  My PA will get you a referral.”  After six months, I finally got an appointment offer.  In another three months.  In Phoenix.  With a neurologist who specializes in epilepsy. Nah.

All I want is a diagnosis, and a prognosis.  I want to make sure it’s not some other process like ALS, which is also on the table because of some abnormalities seen on my last MRI but not followed up on by the surgeon: not his department.

Will someone please tell me what happened to doctors, that they quit being doctors and started being fancy technicians?

What about the time(s) over the past 10 years that I’ve complained of total exhaustion and exercise intolerance and heat intolerance to my primary doc, and been sent to cardiologists who only found mild mitral valve prolapse, and the entire issue was scuttled: The End, no further questions, Your Honor?

How about the time I complained of exhausting fatigue and was offered stimulants???  Great.  No thanks.

Or the most recent debacle where I fell down on the fucking treadmill after screaming that my legs were locking up on me (they do that if I use them much), so the cardiology techs dragged me off and threw me on the table so they could get their “post exercise” echo, later condemned as unreadable but billed to Medicare nonetheless?  Exhaustion not of cardiac origin.  And yet, you would think the cardiologist, being an M.D. and all, might have some other ideas regarding the etiology of extreme fatigue, muscle weakness and wasting, spasticity, and pain…wouldn’t you?

Granted, he did exhibit a modicum of holistic thought when he suggested my fatigue might be due to the naughty guts.  Bingo!  Yes, the guts do cause me fatigue, and I do buy that theory.  But the guts do not give me muscle wasting, spasms, weakness, etc etc etc.  They are just there to help make life miserable and to ensure that I don’t get proper nutrition.

I can’t even drink “Ensure,” because it is so full of lactose that even huge doses of lactase do not detoxify it for my enzyme-less guts.  Fuck a bunch of guts, I want to live on sweet tea and clean, cool, dry air.

I want my diagnosis, and then I want to go back to Colorado where the air is clear and cool and the nights are cold.  And when it comes winter, I’ll go back to the high desert.  And when things get worse, I’ll know what to do.

 

Article: Read the Transcript of TIME’s Cover Story Interview With Donald Trump

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Read the Transcript of TIME’s Cover Story Interview With Donald Trump

….and tell me whether you think his brain is in working order.  I’m not talking about his politics.  I’m talking about his neurologic status.  Reading this, I was struck by his round-about speech pattern, his omissions of words, his illogical statements (illogical in the sense of actual linearity and purposeful-ness).  A list of other red flags scrolled through my brain as I read the transcript.

From my point of view as a physician, Mr. Trump is in need of a cognitive neurology evaluation. 

So….what would we do if Mr. Trump (or Ms. Clinton) turned out to have a dementia?

On another note, how would we feel about a president with a well-controlled mental illness?  (Not fair putting these back to back, but oh well😆)

Please chime in on this one.  I’m interested in your opinions!  Link is below↘↙

http://flip.it/yXNQP

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