August 29th, 2016

Back from Cape, uninformed speculation, hopefully will catch up blog later

We went to the Cape for a week, Aug 20-27. I'll try to get those posts in, but that might take a little while because A. doesn't start school until Wednesday and T. not till next week. But the sitters are back at work at the schools, leaving me with Actual Responsibilities.

In the meantime, I read my email this morning, and ran into this:

http://www.medpagetoday.com/Blogs/CareerConsult/59896

While I certainly love that Dutch medical care for chronic conditions that have a crisis (say, diabetes and the possibility of amputation) lead to actual, in person conferences including the patient, patient's spouse or other family member/advocate, and involved health care professionals, we don't really do that here. We should, but we don't. The patient in the description is, basically, the person managing her care, unless she is unable to, and then someone else is responsible and if she wants to control who that is, that's what Living Will/Health Care Directives accomplish in our system.

I recall some years ago TV news coverage of a woman who called an ambulance to pick her up at the waiting room for the emergency department of a hospital. She had been there for some time, waited for hours, and was, according to the news report, suffering from an asthma attack and in need of immediate care.

While is is certainly very exciting to read about things like an asthma patient waiting for hours in the emergency department, it calls into question the meaning of a word like "asthma". Our general sense of the condition is either not critical (like the kind I, my husband and our son have), manifesting largely as a variety of terrifying sounding coughs that never actually result in breathing stopping or even being all that impaired (they didn't call it asthma when I was a kid, then they called it asthma for a while, and then they were back to not being asthma but maybe being some kind of reactive airway or who the hell knows. But if is very manageable without meds or anything else other than Don't Stop Exercising Suddenly and keep up with your allergy maintenance regime) or rapidly deteriorating. If you have the not critical kind, then calling for an ambulance to pick you up in the waiting room of the emergency department to find a more cooperative hospital no longer sounds like We Need to Fix Our Health Care System and now sounds more like, okay, who exactly is paying for this, anyway.

The story at MedPage made me think of the asthma story. So I thought about that for a while, and I thought about what I knew about POTS and I looked up Ehlers-Danlos, where I saw that it typically has minimal impact on life expectancy and yet this young woman had already died. I know, it is terrifying to see things like tachycardia and a rare medical condition one has never heard of, but lots of things (including some kinds of tachycardia and many rare medical conditions) have much, much, much scarier names than health outcomes. Also, there is a flavor of Ehlers-Danlos with no genetic test.

Then I read the MedPage piece for a third time, and I thought to myself, Self, you have read books about personality disorders. When Jess says:

"But as a human I know that "Tears = Bad" and anyone that cries for twelve hours while begging someone, anyone, to call their physician of record isn't faking it. She didn't stop crying until a doctor with some humanity sedated her following shift change. The complete disregard for her pain stripped her of her dignity and brought me to tears.""

I start immediately thinking of all kinds of stories I have read in these books about personality disorders and other mental health conditions. Jess is right: when someone cries for twelve hours, they are not "faking" it. And I don't doubt that knocking her out stopped the crying. But I also start thinking about the phrase, "personality disorder". But I was having a really hard time thinking which one. I could think of several this _could not possibly be_, and I know you've already figured it out, because the record keeping pretty much is a dead giveaway, but what I did was give up on the thinking and went back to what I do best.

I typed, no quotes: hypermobility ehlers danlos syndrome personality disorder

This is the top result:

http://www.ncbi.nlm.nih.gov/pubmed/24272065

Perhaps, some day, we will have a genetic test to explain why so many people in my extended family have agoraphobia, or something that looks sorta like it (I always think of it as Won't Leave the House Syndrome, and over time it degenerates into Won't Talk On the Phone and, in the last decade of life, Won't Actually Talk At All Syndrome). I would not be surprised one teeny tiny bit that virtually all mental health issues have at least a partial genetic/physical underpinning. Nor would I be surprised to learn that there were immune system, nervous system, autonomic system, joint system implications (the joint pain in my family alone is epic).

But until that Shining Day in the Future when All Has Been Debugged, we are stuck working with what we know. Plenty of sleep at a consistent time. Good food in the right amounts. Clean water. Appropriate physical activity. Supportive friends and family. Meaningful work. Etc. If you have a medical condition that doctors can't help you with, more time in the hospital trying to make them fix you isn't going to actually change the fact they can't help you with it. It is tragic. It is wrong. We should collectively work to fix it.

I sure felt sorry for the nurses, and I'm a little surprised that it didn't occur to Jess that maybe that "broken" call button had been intentionally disabled. I mean, it's damn easy to do (happened accidentally to A. when we were in for her appendectomy; when the bed call button didn't work, I found the staff call button on the wall and hit that. We sure got action then! And the people who showed up made for damn sure the bed alarm was hooked up after that. I, of course, apologized profusely for hitting the wrong button. "By accident." The staff call button cannot be disabled. Why Jess didn't just hammer on that puppy is beyond me. *shrug*).

Anyway. I hope to hell someone makes progress on Ehlers-Danlos. Things like this look interesting:

http://www.ncbi.nlm.nih.gov/pubmed/25821094

This description is a nearly perfect description of one of my cousins:

http://www.ncbi.nlm.nih.gov/books/NBK1279/

I'm pretty selective about how I access the medical system, but I see a lot of positives in the primary care model where a patient has a relationship with a professional who then supports access to the rest of the system. However, I have also become increasingly clear on how ill-prepared primary care physicians often are when they encounter that complex nexus of mental and physical health problems with no adequate solution within allopathy.

Monday's Activities Include: playdate, Bondir, decluttering

We had a playdate! A. doesn't start school until Wednesday but the sitters who work for the schools in town had ALICE training; they showed up a little after 3 p.m. In the meantime, our friends and us all trooped over to Goward Playground to hang out for a bit. Then off to Julie's Place for lunch and finally back to the house to hang out. I called the rec dept and made sure it was okay to go swim at Nara, even tho there is no lifeguard any more since the main season is over. They said sure! So that's what we're going to try tomorrow, weather permitting.

I got a walk with M. after the playdate was over, then I cleaned the stovetop, table and island, put the chairs and stools up and ran roomba while R. and I went out to Bondir for dinner. Roomba did its thing unsupervised and did not beach itself, so it was full when we returned and the floor much nicer (I also brushed the soft furniture so all the food bits from the kids were on the floor where Roomba could deal with them instead of me). I mopped before we put the chairs and stools back down, then I ran around and got the toilets because I honestly have no idea what happened with the cleaner. I texted her explaining that with people in the house, the usual monday morning thing wasn't going to work but she didn't get back to me about a possible reschedule. When A. got home, she was looking for a small toy (which I still have not found), so I went looking for that and decluttered along the way. I mean, if I'm going to go through multiple bins of toys (wow there were a lot of dust bunnies under those bins; what is up with that?), I'm going to replace batteries and get rid of stuff we don't need any more. Nice big sack ready to go to Savers.

I'm going to try to run Roomba upstairs tomorrow; we'll see how that goes.