The camps of chronic illness explained (with a little help from Monty Python)

This post is so bitchen cool and also right on, that I gotta reblog it. Plus which I’m wicked happy because I just could not squeeze anything worthy out of the old content canister today, and here comes Kara and drops this doozie of a post.

Please click on the original post so you will be commenting on Kara’s blog. And if this is your first exposure to this amazing lady and wonderful writer who often causes me to choke from laughing so hard (thanks pal), please follow her blog. Then you too can have your tea go up your nose. Trust me, it cleans out your sinuses.

Polishing Dookie

Those of us who enjoy life with one or more chronic illnesses likely fall into one of three camps. Positivity porn slingers, Tell-it-like-it-is’ers, and Neutral floaters.

giphy1Positivity porn slingers: Perhaps you’ve just been diagnosed and now that you’ve finally got your diagnosis you feel that there’s hope, that things will get better. Or perhaps you’ve had your diagnosis for decades and you’ve FINALLY figured out how to live with it. You see other chronic illness patients who seem to have a dark cloud hovering over them and boy, do they ever complain! You vow that you won’t become like them. After all, a big portion of owning your disease is having power over your mind. Youavoid these people like they’re lepers. Some of them might actually be lepers.

b089c7711c3bc30d651ecd7e835764d9Tell-it-like-it-is’ers: Ah, the complainers. My compadres. It’s likely you’ve been around the block a few too many times, have possibly…

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Trump says he thought being president would be easier than his old life | Reuters

In the “What could they possibly have been thinking when they elected a petulant child to the White House” department:

http://mobile.reuters.com/article/idUSKBN17U0CA

Article: Cannabis compound may halve seizures for patients with severe epilepsy

Cannabis compound may halve seizures for patients with severe epilepsy

http://flip.it/UjtIiI

Um, yeah.  

Ohio State University scientists have proven what those of us who have been using the herb medicinally have known for years: Cannabidiol, or CBD, is a powerful antiepileptic medicine.  The article mentions a few of the other conditions and illnesses that CBD is known to help.

And in the tradition of medications being used precisely because of their side effects (think belladonna [atropine] which dries up respiratory secretions), note that the only side effects to CBD mentioned are sedation and appetite loss.  Useful, those, in certain circumstances.

While this publication is great news for helping to refute idiot attorneys general who still think cannabis has no medical benefit, it’s also cause for caution: right now the biggest threat to unrestricted adult use is…Big Pharma!

Yes, Big Pharma knows good medicine when it smells the scent of Big Money.  And friends, cannabis is big money, no matter how you cut it.

Big Pharma would much rather see the money from cannabis medicine in its own pocket, and we all know that Big Pharma has lots of senators and other influential players in its own pockets.

One chilling example: Arizona’s 2016 ballot measure that would have legalized adult use was narrowly shot down, largely due to a fierce anti-cannabis campaign bankrolled by the drug giant Insys, which is quartered in Arizona.  Insys produces a large proportion of the synthetic opioid fentanyl that is produced in the U.S.  Fentanyl is used in anesthesia and various delivery systems for treating pain.  It’s also been the culprit in many of the recent opioid overdose deaths we hear so much about.

You may be thinking: oh, right, statistics show that in states with legal cannabis, opioid prescriptions decline by about one-third.  So of course an opioid manufacturer doesn’t want that!

It gets worse.

Seems that Insys was just on the point of rolling out its first synthetic cannabinoid, a THC analog that is pretty much redundant not only because there are already synthetic THC products on the market, but also because anyone with a medical marijuana card can get their THC straight from the source.  

But that’s “not good for business,” as Texas Senator Ted Cruz pointed out when I mentioned that rolling back clean air laws is not good for children.  So Insys spent half a million bucks a couple of weeks before the election on a rabid T.V. ad campaign, spreading fear among the uninformed, mouthing the old saws about how marijuana causes violence, crime, unemployment, blah blah blah, and it worked.

So on one hand, the more good science, the more knowledge, the less fear, the better the public can understand and accept cannabis as medicine.

On the other, the more science, the more Big Pharma sees opportunity, the more danger that our access to this amazing plant could be once again restricted, in its natural form, in favor of…pills.

The Coolest Thing I’ve Heard In A Long Time

https://m.soundcloud.com/the-show-about-science/028-cracking-the-genetic-code-with-kevin-esvelt

Six-year-old Nate Butkus has had his own podcast, The Show About Science, for nearly two years.  He’s clearly a pro!  His interview skills are right on the money as he digs deep with his guests, who started out being easily accessible family friends, and now are respected scientists and other famous geeks.

I’m happy to see how Nate’s dad supports his kid.  When Nate said he wanted to do a show about science, his dad, instead of mumbling something about being way too busy, actually took Nate to a sound studio.   Then, when things took off, Nate’s dad made room in his busy life to be his young son’s recording engineer.  Good on both of them!

I hope you enjoy Nate as much as I do.

Big Pharma’s War on Marijuana

While I’m working on the next post, have a look at this.

My next post will give you a second serving of food for thought on this topic!

Patients for Medical Cannabis

On this episode of America’s Lawyer, Mike Papantonio discusses the reasons why the marijuana legalization effort failed in Arizona and speaks with Justin Strekal, Political Director of the National Organization for the Reform of Marijuana Laws, about what pharmaceutical companies have to gain from keeping marijuana illegal.

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Cookie Monster on the Dole – The New Yorker

http://www.newyorker.com/magazine/2017/04/17/cookie-monster-on-the-dole?mbid=nl_170411_Daily&CNDID=19928113&spMailingID=10801900&spUserID=MTg4OTQzMTcxMDk5S0&spJobID=1140854609&spReportId=MTE0MDg1NDYwOQS2

Feets of Dexterity

As I watch this astonishing circus act–one woman’s virtuosic dance with one fabulously flexible body, four limbs, twenty digits, and five juggling balls–several feelings cycle through me.

The first, of course, is wonderment and admiration.  What pure joyful dedication!  You have to see this.

The second is sadness, for myself and everyone else who once knew the joy of a body that did pretty much whatever we needed or wanted it to do for us, but are now struggling to come to terms with some kind of wreck.

The third is fear.  I fear for this circus performer.  Ten, twenty, thirty years from now, what will her life be like?  Will her joints and muscles and nerves continue to serve her faithfully?  Or will she, too, face the late consequences of connective tissue that behaves like a new rubber band in youth….and an old worn-out rubber band in middle age and beyond?

Will she sail into her old age like Martha Graham, the dancer and choreographer who performed her final ballet at age 75?  I hope so, for that is the dream of every dancer, every artist whose body is the medium for not only the expression of life, but the medium for experiencing life itself.

Martha Graham wrote about what happened when she retired from the stage in her memoir, Blood Memory:

It wasn’t until years after I had relinquished a ballet that I could bear to watch someone else dance it. I believe in never looking back, never indulging in nostalgia, or reminiscing. Yet how can you avoid it when you look on stage and see a dancer made up to look as you did thirty years ago, dancing a ballet you created with someone you were then deeply in love with, your husband? I think that is a circle of hell Dante omitted.

[When I stopped dancing] I had lost my will to live. I stayed home alone, ate very little, and drank too much and brooded. My face was ruined, and people say I looked odd, which I agreed with. Finally my system just gave in. I was in the hospital for a long time, much of it in a coma.

Dog Sacrifices Life to Save Wedding From Terrorist « Clarion Project

https://clarionproject.org/dog-sacrifices-life-to-save-wedding-from-terrorist/

A heartwarming story, 21st Century style.

My Body Talks Too Loud

This afternoon I had to get out and see someplace that wasn’t the inside of the van I live in.

It’s been in the 40’s and 50’s here in Northern Arizona.  Very beautiful, too, when not spitting “wintry mix.”  Still not terribly comfortable for those of us with loud bodies.

To be truthful, I’m sick and tired of this body.  I’m grateful for what it’s done for me, carrying me around my life, into and out of some truly wonderful and outrageous and sometimes horrifying adventures.  I love that it carried me on horseback all over the place, allowed me to throw it down mountains on skiis, glided me through water salt and sweet.  It grew me a baby 32 years ago, and then fed and nurtured that baby, who is now his own human being with his own life.

I feel as if I’m saying goodbye to that nice body, the one that danced and played music night after night after night after dizzy exhausting night.

That body is, for all intents and purposes, gone.  That body, the one that I knew I had because it felt so fucking amazing lifting weights, powering up mountains, inching along rock ledges, is changed for one I can’t ignore, for entirely different reasons.

This new body tingles and buzzes.  Sometimes it bangs on pots and pans, other times it feels like zippers zipping up and down my arms.  Reaching for an object gets me electric shocks.  


My previous body had pain. Lots of pain, most of the time, in fact.  But as long as it still worked, carried me around, worked its way into the asanas I loved, I put up with the pain. As long as there was that confidence that if I kept on putting one foot in front of the other, I’d reach my goal, no matter how distant–the pain served as evidence of my progress.

There have been times when the pain put a stop to my activity.  I’ve had stretches of months at a time when simply getting out of bed took half a day’s energy, and getting back in took the other half.  This is discouraging.  But I’ve always pulled out of those nosedives, got back in the saddle and rode away.

Not this time.  

The bones in my neck are getting worn down because of ligamentous laxity.  I love that term, don’t you?  Say it a few times.  It’s fun!

Actually it’s not fun.  When your ligaments get over-stretched and no longer hold your bones in place, the bones slip around and rub against each other.  The cartilage wears off.  Bones grate against bones.

It’s not quite so awful if it’s one or two bones that are loose, but if you have a whole spine full of them, you have a problem.  I have that problem.

It’s not just my cartilage that is crumbling, either.  My muscles seem to have jumped into the act.  I’m nursing multiple rotator cuff tears, in both shoulders.  I have tendons that are shredding.  Ligaments, too, are becoming frayed.

We know this because of MRI information.  We also know this because my recent hand surgery revealed tissue damage that has been going on for decades, a representation in my wrist of the destruction in my whole body.

Of course now the nerves have come on board.  They buzz, they vibrate, they pinch, they stab.  They ache.

Something in my neck has changed for the worse, so I made an appointment with a local spine surgeon who I’ve seen in the past.  Unfortunately for me, he retired at the end of the year, so I saw his successor: a nice young man, full of algorithms and theory but not much experience.

“When did this start?”  His opener.

“In 1983.”  I felt myself slip away into dissociation.  

“Oh, but this time.  Did it start yesterday?”

Patience, Laura.  It’s not his fault he doesn’t know you.

“I have a genetic defect of collagen structure.”  I gave him a quick rundown of my history of spontaneous dislocations, spinal badness, surgery, injections, etc.  His eyes glazed over.

Fortunately, I collect CDs of all my MRIs, and they were on his computer already.  We aborted the attempt at oral history and just looked at the pictures.

Oh look, he says, you have at least three unstable levels in your neck.

Yes, I nodded (not much of a nod, because I can’t look up because my neck is stuck that way).  And something has very much changed, and that’s why I’m here.

And luckily, when the nitwits at the Cleveland Clinic did the Whole Nervous System 3 hour long MRI looking for MS, they used contrast, which showed the benign tumors that are inhabiting my vertebrae.

Did the New Guy think that hemangiomas (benign tumors made of blood vessels) would be a problem for surgery?

Certainly, he said.  But if you have a collagen problem, that alone might contraindicate surgery.

Yeah, I kind of thought so, I mumbled.

There must have been something on the floor, because we both stared at it for an awkward interval.

Well…he fidgeted with his cuticle…I guess the first thing is to get a new MRI.  Make an appointment to review it with me.

The MRI is in a couple of days.  Then I’ll get the news: something I can live with till the next thing?  Something that’s going to cause further damage unless fixed?

Right.  I’ve already had that opinion.  In fact, I’ve had three separate opinions, from three separate spine centers, that all say the same thing: no surgery, not much life left.

I’m feeling like a box of cereal that’s past its expiration date.  Stale.  Crumbling.

And sooner than later, full of worms.