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Sunday, November 12, 2017

The Medical Community Is Doogie Howser Before He Finished High School

We rode MAX downtown yesterday to enjoy Saturday Market and show the kids around Portland a bit.  Unfortunately, as part of the New Normal, even just a short walking jaunt and a few seconds exposure to the heat of Powell's did Ericka in.  After a month of "recovery" from meningitis related to her condition, she's at an even greater deficit than ever.

As we rode the train back to Clackamas Town Center, Sam kept saying, "this is our stop!" because he saw 'Clackamas' on the signs pointing to which track you needed to board.  He didn't look for other clues like the station info, or the ginormous parking garage that is right next to our destination.

That's pretty much how doctors have treated Ericka up to this point.  See one sign, assume you've got the answer, hurrah, let's move on.  It's menopause!  It's sinusitis!  It's a headache!  Take two aspirin and call me never.

They've been as observant as our son.  Sam's excuse is, you know, that he's only 8.  What's theirs?

ntodd

November 12, 2017 in Family Life, First Do No Harm | Permalink | Comments (0)

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Tuesday, November 07, 2017

¯\_(ツ)_/¯

[I]t is life that is a calamity to men, and not death; for this last affords our souls their liberty, and sends them by a removal into their own place of purity, where they are to be insensible of all sorts of misery; for while souls are tied down to a mortal body, they are partakers of its miseries; and really, to speak the truth, they are themselves dead.

 - Eleazar at Masada, 73CE, as reported by Josephus

Rmj highlights an awesomely compassionate Lutheran pastor who said this about the cleansing fire of American gun rights:

“It may seem, on the surface, that God was refusing to give such protection to his Texan children,” he writes. “But we are also praying that God would deliver us from evil eternally. Through these same words, we are asking God to deliver us out of this evil world and into his heavenly glory, where no violence, persecution, cruelty, or hatred will ever afflict us again.”

Rmj then links that casual shrugging with the administration's best and brightest at the Centers for Medicare & Medicaid Services, summarizing thus:

[S]crew people, we've got to save money!  Medicare and Medicaid aren't about helping human beings, they're about pinching dollars 'til George Washington screams!

Rmj then causes me to link that casual shrugging with the casual shrugging we keep running into as part of the Best Healthcare System In The World [sic].  As Ericka describes her 2-year saga of suffering:

I'm dealing with a medical community that can not--or will not--distinguish between menopause and systemic disease.

Her PCP casually shrugged at premature ovarian failure.  ER doctors have casually shrugged at her myriad symptoms with a body under siege.  Most recently, a neurologist casually shrugged at the month she has spent in agony with viral meningitis, trapped in her home unable to tolerate light or sound.

In a suprising twist to the usual medical horror story, our insurance company has casually shrugged as well.  Not at Ericka's pain and desperate search for diagnosis and treatment, but rather at the increasing, immense costs they have incurred during this ordeal.

As my brilliant wife has asked, why is it that no bean counter has looked at how her interactions with healthcare providers have changed?  From a regular, predictable pattern of annual checkups, flu shots, and the like, to an ever more frequent series of contacts with her doctor, specialists, emergency departments, labs and other diagnostic services...

If you plotted a chart in Excel, you'd see data points hovering around a few office visits a year for her whole life, then a practically logarithmic upward trend in the number of visits and associated costs over the last couple years.  Just in October, insurance has casually shrugged at $12,000, with no end in sight.

Yet nobody appears to have considered why so much money has been tossed around in 3 states with 0 positive outcomes.  Yet another charge for over-priced ER drug administration?  Casual shrug.  Yet another MRI?  Casual shrug.  Still in pain?  Casual shrug.

With America's refusal to address gun violence and our broken healthcare system, we are all reduced to partakers of miseries, something less than human.  That is something Ericka and I refuse to accept.

Eleazar et al are wrong, and Rmj is right: Things don't matter. Ideas don't matter. People matter.

We try remind to people that every time they confront us with casual shrugs, because the alternative is quite literally death.

¯\_(ツ)_/¯

ntodd

November 7, 2017 in Family Life, First Do No Harm | Permalink | Comments (0)

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Monday, October 30, 2017

Medicine's Women Problem

Via the MissTreated blog:

As the kids say, read the whole comic.

ntodd

October 30, 2017 in First Do No Harm, Soaking In Patriarchy | Permalink | Comments (0)

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Monday, October 23, 2017

"What happens when you know something is terribly wrong but nobody believes you?"

It’s time for women to be taken seriously when it comes to our health, our bodies and our ability to speak out.

 - Salon (10/23/2017)

A couple weeks ago, Samuel and I went to the local clinic to establish a PCP so we could get refills on our meds (our VT medicos were kind enough to give us plenty to stretch until we'd settled in).  Records had not been transferred yet, so it was pretty much a cold call.  After getting our vitals and our basic exams, I told the doctor what we each were taking, and also asked if I could get something to help me sleep. 

Boom, boom, boom, he sent orders electronically to the local pharmacy without my having to bring up info on our old clinic's portal showing we had, in fact, been prescribed anything previously.  Even my new Rx wasn't an issue.

Compare and contrast:

As Jennifer sought treatment for her symptoms, “they would run a wide range of tests and do investigations. And then when they couldn't find anything, it always turned back to, ‘Well, maybe you're just really stressed. Maybe you are depressed. Maybe there's nothing wrong at all. Maybe this is all in your head.’”

It took Jennifer over a year of seeing doctors and getting second, third and fourth opinions to even land on her diagnosis. Was this reluctance to diagnose Jennifer due to the lack of knowledge about this fairly prevalent disease? Or was there another unstated prejudice standing in the way of Jennifer getting treatment?

“I started to suspect as I was trying to get a diagnosis that I was being taken less seriously because I was young and female there was a strong expectation that because of my youth I was supposed to be well and nothing could be wrong,” Jennifer told me in our interview for "Inflection Point." “But that also because of my youth and my gender that I was just more prone to be kind of anxious and worry about my body and what I was feeling. . . . And I think there's just this sort of unspoken expectation that women are more fragile and more achy, more whatever.”

This has been precisely Ericka's experience with the United States' medical community (please see the previous Factoid of the Day). 

Glibly diagnosed with menopause at 42 by her PCP. when her ovaries completely failed all of a sudden.  Told by ER doctors that she was making herself hyperventilate to explain why she was tachycardic, hypertensive, and doubled over on the floor in pain and nausea.  Scolded for not getting enough exercise when my active, vivacious wife was brought down by absolute fatigue.

At various times during this saga, Ericka questioned herself, and would ask me if I thought she was crazy.  No, the strongest person I know, who always played through the pain, who made amazing shit happen, who could extemperaneously convince funding agencies to give her millions of dollars for affordable housing whilst dressed in gardening clothes, would not all of a sudden...just stop.

She stopped being able to have light in her life.  She stopped being able to listen to music.  She stopped being able to read, be active, do any of the things she loved.

We went to the same clinic last week to jump through bureaucratic hurdles and get an extension of meds an astute ER doc had prescribed her a few days prior to mitigate debilitating pain--neurology couldn't get her in for a couple more days, and it would be the height of cruelty to make Ericka suffer for any length of time.  Yet a 30-minute appointment turned into a torturous, 2-hour ordeal of cajoling, presenting old records, proving the need for relief, even taking a drug test, before the physician deigned to do no harm, and prescribed a mere 2 days' refill to help my wife.

Ericka has a systemic disease.  We know because she has terrible symptoms, and we have a lot of lab data to explain why.  But nobody listens to her because our health "care" system, and society at large, has a systemic disease that quite literally hurts and kills women.

Despite that fact, despite the crippling agony, despite the anguish caused by lacking a diagnosis, despite all the obstacles--from insidious microaggressions to traumatic misogyny--my wife is still here.  She is relentless, and she is smart, and she has put all the clues together and gotten all the pieces in place.

Ericka is going to make the medical establishment listen to her.  Every doctor she meets--not to mention American society--will be all the better for it.

ntodd

October 23, 2017 in Family Life, First Do No Harm, Soaking In Patriarchy | Permalink | Comments (5)

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Saturday, October 21, 2017

A Prater, A Star-gazer, A Good-for-nothing

Factoid of the Day: 26 doctors, 6 specialties, 3 states, 2 years, 0 confirmed diagnosis of the systemic failure ravaging Ericka's entire body.

Over the coming days and weeks, we'll be sharing more about the systemic failure of the American health "care" system, including the entrenched misogyny that makes it nigh impossible for a relentless, incredibly smart woman to be heard, helped, or healed by the medical community despite having platinum insurance coverage.

ntodd

October 21, 2017 in Family Life, First Do No Harm, Soaking In Patriarchy, Suffering Fools | Permalink | Comments (0)

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Sunday, June 12, 2016

Reading Is FUNdamental

From Sammy Sammerson's teacher:

Did you know that Samuel is an amazing reader? I assessed him on Friday, and he aced the Level I (i) book at 95%. The goal for kindergarten is level B or C. I hadn't heard him read for awhile and was so pleased. I have seen over the years that the others will soon catch up, but being an early reader makes life easier. How did he do that?!

For those of you keeping score at home, that means our firstborn went from not being able to read at the beginning of kindergarten to reading at the top of 1st grade expectations.  He now loves to read, and write, and draw when he used to avoid those activities like the plague.

Sam's not only caught up academically, he's blown past his classmates.  That gives us the space to focus on his anxieties and social interactions, all thanks to socialist education and health care, with a bit of Big Pharma thrown in.

ntodd

June 12, 2016 in Family Life, First Do No Harm | Permalink | Comments (1)

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Wednesday, April 13, 2016

Being All That He Can Be


Goofing with Mommy before she headed out to speak at a conference in NH.

Haven't had much emotional space to talk about Samuel Samerson's ADD stuff lately.  Naturally it's a big part of our family life and progess is progressin' even if I haven't been updatin'.

Experimenting with the XR version of Adderall to smooth out peaks and valleys was an abysmal failure, so we switched back to IR several weeks ago.  That's been markedly better, but dosage still was just not enough to really knock down Sam's anxiety/doubts, help him maintain focus, and enable our sweet boy to engage socially as well as we'd like.  

Our biggest challenge has been fattening up Skinny Butt so we can boost his meds.  He finally gained a pound earlier this year instead of barely maintaining or losing weight!  The great team of medical professionals who support Sam all agreed last week that we could kick things up 2.5mgs for a week, and if there are no adverse effects, we can goose it up another half pill.  So far, so good.

We had a parent-teacher conference a couple weeks ago, and Sammy's really caught up academically thanks to his IEP and the wonderful people supporting him.  The boy who hated to write and spell now can't stop making books and is reading off the charts.  Math?  Easy peasy.  And so on.

Sam's occupational therapist says he no longer needs her, so she'll just be checking in on him to make sure his fine motor skills continue to develop.  We'd agreed last year that he didn't need a speech pathologist any more, but as of a meeting last week, now we're exploring a new approach to concentrate primarily on social speech patterns.

There's one more year on this IEP, and it has made all the difference in Sam's happiness and success at school.  Oddly enough, it wasn't designed to directly support him in the area of ADD, since it came about pre-diagnosis, but it's helped him so very much.  Going forward there will be more explicit goals to address attention deficit and related issues.

At our IEP meetings, we get to work with not only the primary teacher, but a special education coordinator, a couple of specialists, and even our super principal.  Our school is totally invested in making sure every student gets what they need, across the board.  We are just so grateful that our community finds value in pre-k education and early intervention, which has set Samuel up for great things (and ultimately saves us all money to boot).

The adventure continues...

ntodd

April 13, 2016 in Family Life, First Do No Harm | Permalink | Comments (3)

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Friday, January 29, 2016

Monkey Brain Rap

Living with ADHD:

Dear God, this life is hard.
Attempts at deliberation,
result in bouts of spacin’.
I’ve no differentiation
between which thoughts are escaping,
and which ones I’m still chasin’.
My mind is overworked,
and I feel just like a jerk
who’s always on vacation.
So before I start to lose focus,
I want you all to note this:
When it comes to hyperkinesis,
I could write a whole darned thesis.
I’m puzzled as much as puzzling,
while containing all the pieces.
Wait a second, that made no sense.
Can I simply just delete this?
If you seem confused
This is the world of ADHD,
and the girl it makes me,
And how it’s twice as hard to get your mind right
When you’re diagnosed with the “combined type.”
There’s gotta be a better way to describe this state.
But I’m gonna try no matter how long it takes.
I can’t concentrate,
yet constantly contemplate
some inner debate,
or what I just ate.
I hate this mental state —
How do I think five thoughts at once...
while my mind is pulling all these stunts?
It’s like, I can’t hear the questions you’re asking me...
Because I’m already holding at maximum capacity.

Elizabeth Paiva.

ntodd

January 29, 2016 in First Do No Harm | Permalink | Comments (0)

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Sunday, January 24, 2016

Guest Post: Monkey Brain Is A Dick

I think we have a lost generation of women who are diagnosed with ADHD later in life, who have had to manage the condition on their own and deal with it on their own for the majority of their lives. The diagnosis is a blessing and a curse: it’s a great relief, but they wonder what could have been different if they had only known.

- Michelle Frank, a clinical psychologist specializing in ADHD

In May of 2015, at age 41, I was diagnosed with ADHD. And I do wonder what my life would have been like had I been diagnosed as early as my son, Sam.

The coping mechanisms I’ve developed over my whole life, organized and fairly “high-functioning”, according to my doctor, masked the hallmark symptoms of ADHD. Inwardly, though, I was in constant destructive self-talk mode. For as long as I can remember, my days ended with recollections of what I’d not accomplished, or how I’d interrupted someone and/or said something stupid, conversations in which I’d completely blanked on what I was saying mid-sentence. I felt stupid and wrong and bad all of the time. I blamed myself for everything. (Low self-esteem? CHECK.)

Because no parent, teacher, doctor is trained to see girls'/women's symptoms as ADHD (the medical establishment emphasizes boys' hyperactivity symptoms and because girls are conditioned by society to conform and adapt), I suffered in silence, shaming myself to be more organized, hold my tongue, not procrastinate and be more responsible, so it would be get better.

An outside referral or evaluation recommendation would never materialize for me. Instead, I was able to put the pieces together. In 2014, after I began to suspect it, did some research, and talked with my doctor about a referral. The “drug-seeking” stigma of ADHD creates an additional barrier between primary care physicians and specialists. So, I was referred to a nurse (not trained or specialized in ADHD) who would determine whether I could receive a referral to an ADHD specialist.

A diagnosis would elude me for another year, ironically:

"hi, my doc gave me the number for the ADHD screening person, and i've lost it, can you give it to me again?" #nailedit
ericka @ergVT · 11:26 AM - 23 Jul 2014

(The referral nurse never returned my call, by the way.)

The social stigma of ADHD is another barrier to sharing my experience. I am fearful to admit to people I have it. I’ve not told my boss. I’ve told my mom and a few friends. That’s it. Most people don’t even know. I think more people on Twitter know than IRL.

I've heard that it’s a made up disorder; it’s the pharmaceutical industry’s ploy to drug us; that it’s a public school failure. Can you imagine telling a person with epilepsy that?

ADHD is a neurological disorder. Simply put, there is a lack of dopamine received by my brain. There are defects in “dopamine transporters” and the transporters take up too much dopamine before it can be passed from one brain cell to another. 

People with ADHD cannot trust their perceptions - executive functions like working memory, flexibility, metacognition, and sustained attention are impaired – and miscommunication will often trigger a negative internal response. We call this “Monkey Brain” in our household.

Case in point, this morning: I refilled my coffee, put the coffee pot back and Todd walked into the kitchen to do the same.

Todd: Did you get enough coffee?

Monkey Brain: What did you do wrong? Did you take all the coffee? What is going on? Why is he mad?

Me: I left you enough for you to have a cup!

Todd: *blink blink* I know. Did. You. Get. Enough. Coffee?

Me: I see what just happened there. I didn't hear your question; I thought I did something wrong. Felt bad. Then guilty. Monkey brain is a dick.

Ericka

January 24, 2016 in Family Life, First Do No Harm, Soaking In Patriarchy | Permalink | Comments (3)