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Tapati
22 May 2013 @ 08:26 pm
Update: I am revising my memoir entries at another blog I have on wordpress: http://tapati.wordpress.com/

All of my memoir posts and other original posts are copyrighted. You are welcome to provide a link to my posts with a short excerpt to catch someone's attention, just as I do with others' material, but please don't reproduce entire posts. Thank you!

If you have followed the link from my guest posts on the No Longer Quivering blog, you may be interested in my other memoir entries. Please keep in mind that these are rough drafts intended to establish the sequence of events and reveal some of the themes of my writing. The finished product may look very different. I am also not putting everything online for obvious reasons.

If you find my memoir posts interesting, please consider supporting my writing efforts by using the Paypal donation button located on the right of my journal pages. Thank you so much.

 
 
Tapati
22 May 2023 @ 02:22 pm
City lights can be structured to avoid the haze of glare that obscures our stars. Learn more.

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Tapati
05 June 2016 @ 07:07 am
Years ago I took a moment to reflect on what writing about Mahasraya was like, having to capture how I felt and thought about him in the past versus my more mature understanding as I recovered from the abuse and gained the perspective of greater life experience. Here is the link to that post:

http://tapati.livejournal.com/495135.html
 
 
Tapati
05 June 2016 @ 06:50 am
I found out a few days ago that my first husband died of a blood clot on May 31st. Apparently he had a complication from a surgery and returned to the hospital and was in critical condition before he died. He was 4 years older than I am, born on September 26, 1954.

Given my own health issues I didn't expect to outlive him so I have a lot of mixed feelings. I am feeling my mortality and processing the fact that he will never make amends to my daughter or even validate the truth of her account of abuse. I know there are people who still love him and are grieving, and I feel for them. I have also had flashbacks of the abuse I experienced. He had such an impact on my life, good and bad, so his passing is a huge event even if I haven't been in touch with him for years.

It reminds me that I have to finish the memoir, which I had put on hold mainly because I still have to write about my childhood and that's particularly difficult. But I want to put it all behind me, the writing, the re-living, all of it.

I find myself playing Alive by Sia over and over these past few days.

https://www.youtube.com/watch?v=t2NgsJrrAyM
 
 
Tapati
05 June 2016 @ 06:40 am
I've often thought of the effort I put into coordinating my medical care as being like a job. I didn't really think about it as unpaid labor that keeps the medical system going until I read this article: Unpaid, stressed, and confused: patients are the health care system's free labor.

I want this to go viral because while I'm a fairly well educated person and more familiar than average with medical terminology, I have to imagine that other patients who have to communicate the diagnosis and comments of specialist A to specialists B, C and maybe D, E, + F have a harder time. I can see how things fall through the cracks and impact patient care and outcomes when exhausted patients in a lot of pain must try to call pharmacists, specialists and several docs or other providers and miscommunication interferes--or they get worn out and give up on getting a medication or procedure or therapy they needed. Sometimes I get tired and take a few months where I do nothing but refill prescriptions and don't bother with follow up appointments or scheduling PT or tests or anything but the barest maintenance. I know I'm not alone. I've often wished I had a secretary to track things and make calls. Sure, if you're young and healthy this isn't an issue that concerns you. For all of your chronically ill (or even acutely ill) friends, family and acquaintances, this is a huge issue. Please pass it on! We need to be aware of it before the people in the health care system will even begin to think of solutions.

Excerpt:

I write a lot about health care for my job here at Vox, and have spent the past seven years covering and explaining the American health care system. But there was something I didn't understand about American health care until this experience.

It is the considerable burden our fragmented system puts on patients to coordinate their own care.

I'm not talking about the work of managing one's health, the work that diabetics do to monitor their blood sugar or the healthy eating choices a doctor might recommend for an overweight patient. This can be a significant burden in its own right.

What I didn't understand was the burden patients face in managing the health care system: a massive web of doctors, insurers, pharmacies, and other siloed actors that seem intent on not talking with one another. That unenviable task gets left to the patient, the secret glue that holds the system together.

For me, this feels like a part-time job where the pay is lousy, the hours inconvenient, and the stakes incredibly high. It's up to me to ferry medical records between different providers, to track down a pharmacy that can fill my prescription, and to talk to my insurance when a treatment gets denied to find out why.

I'm not alone.

"Every three months, I just know I'm going to lose a few days of my life," says Aaron Carroll. He's a pediatrician at Indiana University who directs the medical school's Center for Health Policy and Professionalism Research, and who also writes about health care at the New York Times's Upshot.

..."Basically I call the pharmacy, and tell them I'm out of medication," he says. "And sometimes they'll call my doctor for a prescription, and sometimes they won't. So I call the doctor's office to say, 'Hey, I'm out of meds, either the pharmacy will call you or you need to call them.'"

Carroll told me he almost always runs out of his medication early and ends up rationing pills because something goes wrong — a lab test goes missing, a prescription doesn't get transferred. And he's a physician. What about the rest of us?
 
 
Tapati
I keep reading about studies indicating that black people--including children--are not treated properly for pain because doctors and other hospital personnel mistakenly think they don't feel pain in the same way as white people. I have wondered whether this bias is sufficiently addressed in medical school.

Then I read this: The Patient Called Me 'Colored Girl.' The Doctor Training Me Said Nothing.

Excerpt:

Medicine struggles with a chronic disease: racism.

Medical schools try to combat this disease with diversity initiatives and training in unconscious bias and cultural sensitivity. I’m about to graduate from the University of Virginia School of Medicine, so I’ve been through such programs.

They’re not enough.

Every one of us needs to own the principles that protect us and our patients from racism and bias. That means learning to see prejudice and speaking up against it. But that is far, far easier said than done.

Again and again during my four years of training, I encountered racism and ignorance, directed either at patients or at me and other students of color. Yet it was very hard for me to speak up, even politely, because as a student, I felt I had no authority — and didn’t want to seem confrontational to senior physicians who would be writing my evaluations.

These situations made me worry for our future: How can medical professionals address the needs of a rapidly diversifying population, when we cannot address prejudice within our own community? </blockquote>

See also:

Gender bias https://psmag.com/is-medicine-s-gender-bias-killing-young-women-4cab6946ab5c#.pxhno9uqz and http://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/?utm_source=SFFB

Anti-fat bias and misdiagnosis: http://www.prevention.com/health/medical-fat-shaming

More about racial bias including pain treatment and medical school misinformation:

https://www.statnews.com/2016/03/10/medical-schools-teaching-race/ "Medical students looking to score high on their board exams sometimes get a bit of uncomfortable advice: Embrace racial stereotypes.

"You see ‘African American,’ automatically just circle ‘sickle cell,’” said Nermine Abdelwahab, a first-year student at the University of Minnesota Medical School, recounting tips she’s heard from older classmates describing the “sad reality” of the tests.

https://www.washingtonpost.com/news/to-your-health/wp/2016/04/04/do-blacks-feel-less-pain-than-whites-their-doctors-may-think-so/

African Americans are routinely under-treated for their pain compared with whites, according to research. A study released Monday sheds some disturbing light on why that might be the case.

Researchers at the University of Virginia quizzed white medical students and residents to see how many believed inaccurate and at times "fantastical" differences about the two races -- for example, that blacks have less sensitive nerve endings than whites or that black people's blood coagulates more quickly. They found that fully half thought at least one of the false statements presented was possibly, probably or definitely true.

Moreover, those who held false beliefs often rated black patients' pain as lower than that of white patients and made less appropriate recommendations about how they should be treated.

http://www.nbcnews.com/health/kids-health/black-kids-get-less-pain-medication-white-kids-er-n427056

Black children with acute appendicitis -- a clearly painful emergency -- are less likely than white children to get painkillers in the emergency room, researchers reported Monday.

And nearly as troubling, only about half of any of the kids got painkillers, even though they're strongly recommended in cases of appendicitis, the researchers found.
 
 
Tapati
01 March 2016 @ 04:45 pm
Her experience is so similar to mine, right down to being called a liar.

"THERE IS NO SUCH THING AS A TRUE STORY"

http://therumpus.net/2016/03/there-is-no-such-thing-as-a-true-story/
 
 
Tapati
26 December 2015 @ 07:16 pm
http://captainawkward.com/2015/02/16/662-and-663-my-friend-the-skeptic/

I wish I had seen a column like this when I was trying to understand a former friend's way of talking to me after I was diagnosed with multiple forms of chronic illness. I wouldn't have felt so alone with my conflict, for one thing, and might have gained more insight into her behavior. I was so confused and hurt and her challenges of nearly everything I said about my own life left me feeling worthless and stupid. I wish also that I'd read up on gaslighting.

Excerpt:

"S. has been there for me, even when we were in different countries this past couple months. Now that we are back in the same place things have gotten… weird. Her new attitude is “question everything”, because she wants to be a teacher and apply that philosophy everywhere. Yet to me, her questions don’t seem to be coming from a place of wanting to know or understand, but to get me to self reflect. She has also said it is important for her to question me so I can “have a better understanding of the larger situation”, especially because I tend to “overreact”. It may sound dramatic, but I feel like I’m being interrogated a lot of the time. I don’t want a life coach that inadvertently victim blames me (which is why I go to my super lovely therapist), I want nerd out with my friend.

"I told S. that I love her ability to ask good questions, because it means we have really excellent dialogues, but that sometimes just jumping into questions about my personal issues without starting with validation or support is too much for me, and she responded with 'I can’t change who I am.' "
 
 
Tapati
17 December 2015 @ 09:42 am
Sia  
Alive: https://www.youtube.com/watch?v=t2NgsJrrAyM
 
 
Tapati
I Had Cancer – And Medical Fat-Shaming Could Have Killed Me http://everydayfeminism.com/2015/09/medical-fat-shaming-danger/

Basically, young woman coughs violently from senior high to her twenties and keeps getting told oh it's an infection, here's antibiotics, lose some weight or it's GERD lose some weight while getting sicker and sicker. It was cancer all along. It's amazing she's alive.

Why investigate further when you can diagnose fat and feel like you've done your job.

On a related note, a woman just told the story in comments yesterday that she went in with appendicitis but docs were just sure she was pregnant or had an STD instead because she was young and black. Anyone knows time is of the essence when your appendix might burst--and of course hers did. :/

I don't expect all doctors to be magically free of bias. I DO expect them to question their bias regularly. How would I diagnose this if the patient were white, were thin, were straight, and so on?